Pazel

Slowest Moving Blog Ever

2006-07-25T20:51:00.000-07:00

If you're reading this, I'm completely amazed. Really. I mean really really.

My life has been full of change. I graduated from Berkeley. We moved from California to the desert. I have a new job where I've got an office and title and staff and day care. Yep, I'm a bad mother (tongue in cheek). But after the last 5+ years of being home, it's a change, which I needed. I'm still getting used to all of it.

Jack is great. He does fine in day care, but he does get sick easy, and often and worse, so I'm looking for something else - probably share a nanny. I'm not sure how to set that up and I barely have time so I'm not sure how I'll change it now.

My favorite things about him....
~~When I lay him down to bed and he just lays there and looks at me. No crying. Almost like he's nodding his head to say "you're right, I am tired."
~~When the phone rings and he goes running through the house looking for it saying "uh-oh, uh-oh". If it's a telemarketer, I let him answer it. Just for this reason I haven't signed up for the do not call list for our new phone. If it's not, then I answer and he cries until I'm done. Then I call our home phone with my cell so as to get him happy again. (I'm a sucker.)
~~When he tries to give me big giant open mouth kisses.

What I'd change...
~~How he cries at every diaper change. That diaper rash never goes away so it hurts. And he poops 6-8 times per day so I have to change him often and use wipes. Poor little guy.
~~And, how he sometimes wakes too early and wants to be held. So I feed him (yup, still bf-ing at 15 months) and love him, but then I put him down to do my hair and he cries at my legs. Then at work I notice the baby snot smeared on my knee.

As for Janie, she's perfect as usual. This little girl is so well behaved, easy going, polite and everything, my friends want her as a role model for their kids. She's always in a good mood. I'm not sure how I ever deserved such an angel. I like to sing her songs on the radio and change the names to her or Jack. Today it was a country song (don't you judge me) that went "To the worrrrld, you may be just another girrrrrrl. But to meeeeeee. JANIE you aaaare the worrld." I do it because it makes her smile. It makes me smile too.

As for Matt, he's working outdoors which is hardcore out here. Friday it was 120! And he's doing it for me, so I could get this new job here. What more need I say about a guy like that?

So a pretty boring update. And that's how I like it. Boring. Life isn't perfect, but it's not as exciting as it used to be. And that's good.

5 Things

2006-01-17T01:31:00.000-08:00

I apologize for the spotty posts. Unforgivable really.

In return I offer to you these pictures of me and mine as a token of my affection...
http://www.flickr.com/photos/pazel/

First I'll finish the hospital story.
I threw a fit and we got moved to a wonderful room, with no roommate for two nights. Then he shared a room with a 14 year old who had fallen from her friend's bicycle handlebars and had several broken bones. Her family prayed a lot for her, but wouldn't stay with her in the hospital. She cried the first two nights. She also kept the tv on constantly and I've never seen so many teen shows in my life. (That's So Raven, Suite Life of Somebody and Somebody, and so on.)

Second I'll tell you how great he's doing.
He is doing great. We had to start out by taking him in twice a week to watch for dehydration. Blood draws- poor little guy. We had to write down all feedings and weigh all diapers. The feedings part was impossible to document because he was up most nights all night feeding just because he was so happy to be home in my bed with his best friend boobie so close again. Although the skin on his butt is so delicate, we've been keeping it constantly creamy with his prescription creams, sprays and powders (many layers) that it's stayed pretty normal underneath it all. Also, his appetite is much better, and he's turned into a pleasant baby instead of a cranky, fussy guy. He's still very clingy, but I guess that's to be expected. He only has 25% of his colon (large intestine) - he's watching out for bandits in scrubs to drug him and take the rest.

Third is how we're all normalizing.
Janie still calls diaper changes "bag changes." And all her baby dolls have pretend stomas (colostomy sites). She finds it fascinating that he poops like everyone else. I love dressing him in pants and shirts instead of onesies. Real boy clothes. Family is more comfortable watching him for us - although his diaper changes have more steps, it's a big change from having to explain how to empty a bag or change one. Matt and I are constantly looking over this past year and being surprised at how far we've come. Hirschsprung's, colostomy, pull-through, digoxin, who knew all that 2005 had in store for us? And now we're going to be pretty normal. Boring normal. I think it's refreshing.

Fourth, for my New Year's resolution I chose to treat him like a normal baby and have him sleep in his crib. And I let him cry. Not everyone agrees with this method, but within two days he became the best sleeper. Now he sleeps from 8pm to 6am without waking, and all in his crib. This from the kid who fed all night in my bed and would get upset if I dared tried to roll away from him. And it was very tough to do, but I had to do it. I needed the sleep and I also needed to start treating him like a regular baby. And it was the best thing I've done in a long time.

Fifth, I'm not sure what I'm going to do with this site. I'd love to write more often, yet it is impossible. My days are spent holding him, taking care of Janie, trying to get caught up on laundry, working (oh yea that), putting toys away, and working on school. I graduate this May if I'm a good girl. I'm job hunting which is very important to figure out what I want to do (which I could discus ad naseum) and where we want to live (California is so incredibly expensive, we'd like to move to a better way of life).

I don't want to give this site up. It's been my lifeline and my get away. It's my support and my private space. Yet, I feel incredible guilt for stopping and starting and being absent too much. If only I could find a way to get my thoughts posted as I get my few moments to think alone - while driving, showering, or trying to fall asleep. Most of the other time I'm so focused on the act at hand - or trying to figure out how to get away for a nap - that I don't get that deep.

So I want to apologize in advance for my flighty-ness and departures and absences. I'm thinking about this site, mentally wringing my hands that I'm not here, but it's spot in my list of things to do is a dusty spot rarely seen by my pencil - except as I constantly write in more new things above it (like the bathroom renovation to start next week).

If you have read this far, you are far more loyal than I have been and it is to you that this is addressed. I'll be back. I promise. I wish I could be here more often. I'm just crazy busy. I'm sorry. And I'll 'see' you soon. Thank you for being here.

Pazel

Pazel crashes

2005-12-21T11:36:00.000-08:00

He's mid-nap, so I only have a moment. When he wakes up we're going to try to find some presents.

So where was I? Oh yes, he got moved from ICU to a surgical bed. I was looking forward to getting back to the surgical floor where we had spent the first night. There were actual walls there, some element of privacy, and a personal pump in the room so I didn't have to trek down to the NICU every few hours. The transfer didn't happen until close to midnight.

(From a hospital financial analyst I can say that this was a terrible idea, that keeping him in the ICU just another 15 minutes would have allowed the hospital to charge for the ICU day instead of a Med/Surg day which would probably mean an additional $800 for the day in reimbursement from my insurance company. But, they needed the bed for another child and operational decisions trump financial implications, although do that often enough and it's like throwing money out the window.)

Instead of moving back up to the 5th floor, they moved us to the 3rd floor which is not a good place. It was a triage area that had been turned into surgical overflow beds, which meant it did not have walls. There was basically 10 families parked around the room with only the thin curtains seperating them. I liken it to a human parking lot, although Matt didn't think it was that bad. On the other hand, he was at home with Janie while I had to sleep there. It seemed like each family had their TV on, and all the babies or kids were crying, maybe because this midnight TV watching was keeping them up. Meanwhile, some poor kid was throwing up a few beds over, and the monitors for the patient next to us kept going off because they had been set to an adult setting instead of a baby's. And I had to use the public bathroom that seemed miles away, and the pump in the NICU, another bunch of miles away. And my baby had just gotten out of the ICU, was swollen so much he was not recognizable, was still not awake most of the time, was still very congested, and heavily medicated. Add to this my fear of him contracting RSV and/or a hospital infection like he did when he was in the NICU.

So I cracked. I didn't get angry because it wouldn't do any good. And although the nurses tried to get me to talk about it, they didn't understand. They figured I was tired and emotional. That's true, but up until this point I had been able to keep it all in check. I had been riding the wave, living in that particular moment and no other. So I wasn't concentrating too much on the big picture, just the little details. Are his heart rates okay? Is he in any pain? Did that nurse wash her hands? Is his oxygen dropping? Is the swelling going down? But now, the despair kind of overtook me. I couldn't sleep. I knew there were wonderful rooms upstairs. They told me they were full upstairs. But mainly they told me that Jack's surgeon had made a specific order for him to be placed on the 3rd floor, which they said is really unusual since most of the time they only keep people there who are staying for a night, not a week. I couldn't see spending my time with him in this area. Although the nurses were nice, and the space was clean, it seemed very third world for all of these families and their hurt children to be in one room to stay.

And while I had been very positive and very stable all this time, this third foor space finally broke me. And I couldn't stop the tears. And I couldn't get my mind out of the dark hole. Like I had tripped into some hidden booby trap that no one else could see.

Of course now he's awake. I'm sorry, I'm going to run again. I'll be back again soon.

We're Home!

2005-12-17T15:05:00.000-08:00

All is well.

Jack was admitted a week ago Monday. I think I cried worse than him while holding him down for the IV. The nose tube took a few tries. Flushing of his system was messy, but went fine. The nurse said that we'd be doing a lot of bag changes as we'll be putting in so much liquid that we won't be able to empty it quick enough, plus he will be too wet to have bags stick well. Thankfully I had done my homework and had read the best way to do it. I asked for a foley catheter to be hooked up to the end of his bag (which has a spout) so as we poured all this tons of liquid down his nose tube, it would eventually all pour out his bag, down the catheter tube and into the catheter bag. We still had two bag changes (once with me being drenched from chest to knees because Jack and I had fallen asleep while a leak occurred), but much better than what they had suggested.

The bad part was cutting him off of food. He was on a clear liquid diet (no breastmilk) from noon to midnight. He got his first taste of apple juice which he found to be a great replacement. When we cut him off of all liquids at midnight, he got angry and screamed and fought, occasionally wearing himself out to nap, but waking again upset. This went on for 11 hours. I asked the resident if he could have some meds to help him relax or feel better and she said no. "So what can we do?" "Comfort him." Gee, hadn't thought of that. Thanks b8tch. As they said from Boogie Nights, "That's not MP. That's YP."

Surgery was Tuesday. I think it would have been much harder to let him go except that they gave him some meds to make the transition easier. Basically, it made him drunk-like. He was smiling, laughing, chuckling at our stupid attempts of humor. (Say to a baby on drugs, "Whassssaaaa" and he'll give a full belly laugh.) When I handed him over, he was smiling and happy and so were we. I had been told originally that it would be from 4-6 hours. When we brought him in at 11, we were told that it would be done by dinner. We got our pager and went down to the cafeteria to wait. When 4 hours passed, we didn't think anything of it. When 6 hours passed, family started calling our cell phone to see how it went, but he wasn't out yet. When 7 hours passed, I started imagining the worst. He was on the table and they were trying to revive him. At 8 1/2 hours, we were unable to speak. With no updates from the operating room, as much as we didn't want to interrupt them, we set off on our way to find out what was going on. Part way there we ran into his surgeon, walking towards us with his gown flying behind him like a cape, eyes tired, serious look on his face. "Fine, everything went fine." Thank you God. We eventually learned that the surgery took longer because of the extent of his Hirschsprung's is more than usual. After this surgery he has effectively only 25% of his large intestine.

We went to the recovery room. They were having troubles waking him, although he was okay. They want him to wake up enough to try to take out the ventilator tube. I couldn't help but think that the 11 hours of screaming from no liquids was what had wore him out. To help strengthen him, they gave him some blood. (Somewhere out there is a stranger who donated blood, maybe at work, maybe at the blood center, maybe at a drive somewhere, that went to my son. Thank you.) Eventually he started waking up a little bit more. At 10 hours after the surgery, he was moved into the PICU (pediatric intensive care unit).

The PICU is set up with many beds with no walls seperating them and a nurses station in the middle. It looked a lot like the NICU except the beds were some cribs like for Jack, and some were beds with kids in them. There was also a lot more activity than in the NICU, with more people who were very busy at all hours. Jack didn't require any help with breathing, just monitoring his vitals and keeping his pain under control. I slept that night in the fold out chair next to his crib, with all the lights of the NICU on, and everyone working around me. You wouldn't think it would be possible to sleep under those conditions, but believe me, when you're that tired and relieved, you can sleep anywhere. I woke up at 5, suddenly aware of all the activity, that I had fallen asleep in a public area, a work area.

He was in the PICU for two days. during that time he was very swollen. He looked huge. His eye lids were so swollen he couldn't open them. They looked like he had been punched, except the color was fine. On his second day, he would crack them open then lift his chin to try to peer out the bottom. He was so full of water that his weight had gone from 8kg (17.6 lbs) to 9.5kg (21 lbs). It's a side effect from the surgery and anesthesia. He was barely recognizable. He looked a lot like Janie when she was a chubby baby, and nothing like his usual skinny self. While he was in the PICU he had one or two problems with his oxygen dropping, but those were fixed with some oxygen. He was also very congested as his lungs got "floppy" from the anesthesia and laying down. We would try to get him up to have him cough, which sounded terrible. He also had some albuterol since he developed a wheeze. All in all, he was doing fine.

I'm going to have to continue this later. He just woke up, and Matt and Jamie just got back from Christmas shopping. Speaking of which, you'd never believe how behind I am.

Surgery

2005-12-05T00:22:00.000-08:00

Jack's date has come. There was a cancellation so Jack is in. When I got the call, my stomach fell and I almost threw up. Yes, I wanted a December surgery, but that's easier to say when the surgery date isn't set and seems still far off.

Today, I guess I can say today as it's past midnight, we will call at 8 and they will tell us what time to bring him in. They will give him an IV, probably take blood for tests, and then they will most likely give him a tube in his nose to start administering a liquid to clean out his system. He'll be admitted and not allowed to eat. In other words, it will be a horrible day. Horrible.

Tomorrow, Tuesday morning, he will have surgery. They will take out half his large intestine and hook up the good part down to his rectum. They will take out his colostomy. Then he will stay in the hospital for probably a week as we get him to eat and hopefully poop. The pain meds slow the digestive system, so there's a trade-off between pain and speed.

And I don't want to do any of it.

I want him to get the surgery. I would love to stop using the bags and get him as normal as possible.

I don't want him to be in any pain. I don't want to put him in any danger. I don't want him to get scared or uncomfortable.

And while I know that this phase we're in with the colostomy and bag changes and all is difficult, it is our reality and we've become accustomed to it. I hate it, but I can do it. This surgery will end that, which is good. On the other hand, the surgery will not make him suddenly perfect. He will not be normal. He will be missing half his colon. He will suffer from severe diaper rash and will most likely need suppositories and such as his system learns.

He's part of me. Somedays, as he clings to me, my little spider monkey, that attachment is so acute. I can't get a free second. When Matt is feeding him, if I walk by he starts moving his hands and kicking his feet, pleading with his eyes and whining. We're still sleeping together and breast feeding. He's my little baby and he needs me. And I kiss his cheek and put my hand over his head, and I need him. He has the sweetest smell, and softest skin. And his little face is just a miniature of my husband combined with a male version of our daughter.

I plan on trying to stay in the hospital with him as much as Janie will let me. We've got Matt's parents visiting to help with her. I can't be away from her either, but this is a shorter stay with a more definitive ending time than when he was in the NICU. He's also more aware of me and his surroundings. He's going to be scared if he wakes up without me. And he's going to be looking for me specifically. I will not let him wake up without me.

I hope that someday this will all be some interesting story we tell him about how he got those scars on his belly. I'm looking forward to a day in the near future when I can blow raspberries on his tummy. And when he can wear two piece outfits like any other boy. And I want to give all the rest of his bag supplies away to the ostomy nurse to give to other patients.

My little baby. Sleeping in his polar pals zip up jammies, arms spread-out, lips making little sucky faces, chest rising and falling with each breath, dreaming of boobies, kitties and his big sister. You won't have to endure any more bag changes. I know the bags bother you by how you're always trying to grab and rip them off of you. They will soon be history. It will not be easy, but it will be for the best. Know I'm by your side, and we all love you. You're going to be okay. I love you.

RSV Vaccine

2005-11-17T17:13:00.000-08:00

The cardiologist said that he thought that the synergis was a good idea and he would submit his approval. That is he did, but then he opened Jack's file and remembered that Jack was not a premie. Apparently, Jack doesn't fit into the requirements for Synergis (the RSV vaccine) because he was not premature and he doesn't have something like congestive heart failure. Actually, his heart has not had any problems since he's been out of the NICU. Being on the heart meds is not enough. And he's never had respiratory issues. So we're back to where we were.

I've tried to find out the cost, and as far as I can tell it would be $1300-1500 if he was a premie, possibly more since he's not, just for one month's protection against RSV. That's all I need really.

To the insurance company I want to say this...

We can decide right now that our son should be put on the surgery schedule for December. He would be admitted in December and have the surgery and spend a week in the hospital. During that week it is more likely than not that he will get RSV. When he does, without the vaccine, he will get very sick and he is already sick enough. The extra care required will cost far more than $1500. So really what I'm proposing is hedging the cost of the surgery. A financial deal with and extra benefit of additional customer satisfaction.

But, that's not how it works. They will want to save the $1500 by having me postpone the surgery. By postponing it, I will also be going into the new year which means new deductibles. So, while right now I've maxed out our out-of-pockets, next year they will start over and I will have to start paying all over again.

There is no common sense applied to this. They will have him wait to save the vaccine cost. They will have him wait so they can collect new patient deductibles from me. And the cost to this is not just my sanity, but they are risking whether something will happen with this stoma and he could end up getting the surgery anyway but on an emergency basis. That has to be more expensive than a planned surgery, plus he will then get the RSV from being in the emergency room and not getting the vaccine.

One track mind.

My inlaws are coming over tomorrow. I've got to get the house clean. Then I've got a school project I've got to get done because we're meeting with the client tomorrow. It's a financial project for a start-up. It's not too bad, except for the typical white male business student with attitude on my project. All his ideas are good and all of mine are bad. If this were the Apprentice, at this moment I would be doing my sidebar with the camera. Then I'd work to get him fired. But, since this is school and my grade is partially dependent on him, I'll try to make it work.

Sorry I've been MIA

2005-11-16T00:06:00.000-08:00

Time... I just don't seem to have any.

I'm so sorry I've left you all hanging. First there was Katrina, and then the semester restarted, and work got crazy crazy. Here it is, midnight, and I've still got tons of things to do before I sleep. Part of this may have to be typed one-handed in case my little wonder needs a drink.

Next to me is Jack. My little love. He sees his cardiologist tomorrow and I will be asking him for help. Back in July the surgeon said that we'd set a November surgery date (to take out his colostomy and bad intestine and hook his good intestine up to his butt to poop like a regular baby). Then we saw him in October and he told us that we needed to wait until January, maybe February, whenever RSV season is over. Of course we could do it now, but Jack will most likely get RSV while in the hospital post-surgery and end up on a ventilator. Our choice. Gee, let me think about it. So, I had saved everything I had to get to that October appointment, planning on a November surgery date to get our lives back to some sort of normal. And now they're saying January, February if we're lucky, maybe not until March!

Meanwhile, lately his stoma has been prolapsing, which means sometimes sticking out as far as 3 inches. Hold you fingers that far apart and imagine your baby's intestine sticking out that far inside out and you'll know why I've been a mess lately. Again, I was fine. Lasting to November, taking care of his colostomy and heart meds. But then when I think I've got it together, it prolapses, and nothing could look so wrong. I've asked several times different doctors and nurses and "as long as it's red and puffy it's fine, but go straight to the emergency room if it turns blue or black." Oh, I'd do that for sure.

After talking to the pediatrician, my plan is as such. We're going to try to get Jack approved for the RSV vaccine because of his heart. Then we can get him his surgery without so much danger from RSV. So tomorrow I need to make the pitch when we see the cardiologist. Cross your fingers and all that.

The thing is, I'm not sure I'm making the right decision. It's all about me and for me, or at least it feels like it. Besides screaming through the bag changes, or trying to rip the bag off whenever getting his diaper changed (and lately through his clothes), Jack doesn't care about any of it. He doesn't seem to notice at all. Once he gets his plumbing fixed, he will get severe diaper rash as all such babies do. His poop is still completely liquid, which is not right. Life is not going to get easier once the surgery is done. I want so bad for everything to just be right, but really it won't be. Sure, I won't have to see my son's colon anymore and he'll be able to wear pants, but at what cost?

My pediatrician talks so confidantly about how to care for Jack and so on. I love him. Did I mention that he looks like Daffney's lawyer ex-fiance on Frasier? Sorry, obscure reference. Anyway, I asked him if he'd had another patient with Hirschsprung's before. "Oh yes." Really. How many? He thought awhile, then answered, "One." In his whole career.

So I asked the pediatric surgeon, "Do you do these surgeries a lot?" "Yes. A lot." "So, what is a lot? Daily? Weekly?" "About 2-3 a year." Great.

Gotta love those obscure birth defects.

So I'd ask someone else what I should do and how they survived, but I don't know anyone else who has dealt with this. I'd want to know how bad the diaper rash is. Or if the poop got solid. Or if the prolapsing bothered them. And how they kept it all together.

Jack had a developmental assessment and loved it. The doctors played with him and he showed off, scoring normal or above normal on everything except speech. He's a man of few words. I think the concern was whether he would be at where he should be because of his time in the NICU and whether he was getting enough tummy time. Yep. He can roll easily back and forth, and does a sort of rolling action to get to what he wants. He can sit for awhile and loves to stand. He did great with the different toys, and seems to prefer his left hand, although it's still pretty early for that to be set. He doesn't need to go back for another 6 months, so he must have impressed that he's doing well despite all.

As for looks, he looks just like his father, same smile, same face, same head, same shaped eyes. Jack is growing faint brown hair like mine, with none of Matt's curl. And his eyes are a medium blue - a color all his own since Matt's are brown, mine are hazel, and Janie's are light blue. As for build, he's very lanky. My long green bean. I think he's on the 25th %-tile for weight and 90+ %-tile for height. It's that whole digestion thing. And he's not that fond of food. Unless you're talking about late night breast feeding, in which case he's totally on board. During the night he feeds almost hourly still. Really. At 7 months. I don't get solid sleep and haven't since he was born. This is where he takes advantage of me, and I let him. I suppose I can not feed him, but they are good feedings and he's kind of skinny so I do it. He doesn't breast feed so much during the day. He eats, but not a huge amount. He's just not that much into it. I have to really sell it to him.

And he still sleeps with me, although you could have guessed that from the feeding part. During the day he naps in his crib. Janie was in her crib for nights by 3 months. Different kids, different needs. Or is it that I'm just softer as I've gotten older and he's got me curled around his finger?

Meanwhile, Janie turned 5. We had a great party with my mother showing up as the evil queen from Snow White, my sister as Snow White, my other sister as Cinderella, and her boyfriend as Prince Charming. My cousin overheard some mothers sniping behind my back about how I'd hired all these characters. Nope, we're related. But I'll take that as a complement, since I would have been just as snarky.

So much to catch up on...
... Still haven't written thank you cards for all of the baby gifts. oh my god.
... Have a cavity and no way to get to the dentist. Jack would never sit through it. And I use my husband's aunt to watch him for my classes. And the dentist is closed in the evenings, on the weekends, and Fridays. Bah! Goes with my spa gift certificate I got at my shower that I haven't had time to use. It expires at a year, and that will be here soon enough.
... Mammogram has been put off until 2 months after I'm done breastfeeding. Tech asked if I'd be done soon. Not sure. Probably done whenever he wants to be done or he grows teeth. It's that pesky lumpectomy thing I had 2 years ago January.
... Saw nephrologist again who found some sort of strange protein things going on in my urine. She wants to test me for lupus but is putting it off until after Jack's surgery, because I have enough to deal with already. So I just try not to think about it. Um, okay.
... Lost 55 lbs so far since day before his birth. 30 was pretty easy, as it consisted of my 9 lb 5 oz baby and his ecoutrements. The other 25 has been weight watchers and breast feeding (and not sleeping much).
... Had first phone interview for job and found out that working from home can be considered by others as same as not working. Plus she asked if I had kids and their ages because of the ability to relocate (or ask illegal interview questions). When I said I have a 7 month old I got the old "Ooohhh." and not in a good way. Wonder if I should submit proof of my tubal ligation? And if they think a baby at home will make me less of a candidate, good thing his health didn't come up. I didn't need any more strikes.

It's almost 1 and I'm starting to run down. I feel bad that I was away for so long and that you worried. I'm okay and Jack's okay. We're all okay. I complain a lot to you, but that's because I don't with anyone else. I don't want anyone else to know. I want them to like him for who he is. I don't want him to see any sad faces. So I don't say and no one knows. Except you. You know all and love him still. Guess that blows my whole theory.

Thank you.

Katrina

2005-09-02T11:27:00.000-07:00

The news on Katrina is horrible. I feel like we've abandoned those people. I want to do anything I can to help.

At the same time, I'm trying to keep my husband from going down there. They're putting a crew together to send to the Gulf coast to help restore power. It's similar to when he went nearly a year ago to Florida for 3 weeks after that Hurricane. He would like to go. Now that I'm working part-time, the money would be good. He wants to help. And, his crew is going including his foreman. But I don't want him to go. It's not his safety that I worry about as I don't believe they would put him in a dangerous situation; the job is dangerous enough. Actually, it's me I worry about.

I need him right now. At the end of each day I start watching the clock hoping he's on his way. And at 6am, when Jack needs his bag emptied, a diaper change, and meds, I count on Matt taking care of him for just a few minutes. Then there's my Tuesday night class.

I know that if pressed I could find a way to work it all out without him. I just don't want to . Strongly don't want to. Desperately don't want to. So where I'd usually tell him to figure out what he wanted to do and then do it, instead I'm just flat out telling him that I'd rather he stay here. Still not the strongest words as I'm not an ultimatum type of gal. I'm just feeling kind of torn between my compassion for the people down there, and my own selfish needs. How about next year's disaster, when the baby is older and I'm getting more sleep and no longer in school?

I'm having a hard time watching the news. The suffering is immense. I see babies and children and I want to grab them and put them in my house. I feel guilty for taking a shower when they need drinking water. And look at all this food in my cupboard when they are so hungry. I don't blame the resuers, they are trying. But I'm developing an intense anger at the government. Hey, we knew this hurricane was coming for a few days. And it's now been what, 5 days since it struck?

I saw this woman on the Today show this morning. Two days ago she was on the news, holding her baby, calmly talking about how everyone was being so neighborly. Her blond hair was up and looked very neat. She looked like she was on her way to gymboree instead of outside a shelter. They showed her again today, wearing the same clothes, still holding her baby. Her hair is stringy and wet. Her eyes are crazed, words desperate, pleading for help, begging for water, saying she's having a hard time rousing her baby. And I'm sick about it. What the hell?

What would I do without water or food for my children? What wouldn't I do?

My baby had cereal this morning, and is currently sleeping in his swing. I wish her baby had the same.

I want to do anything for her.

But I'm trying not to send my husband.

F8ck.

Musings

2005-08-24T12:28:00.000-07:00

Since I last posted I had flown to AZ for work and then back home again. In my absence, Matt and my mother handled Jack and Janie. And on the drive from the airport, Matt couldn't stop talking about how much they missed me.

My little cutie pie went from waking every two hours to crying from 12-2. "What is this formula crap? Why should I listen to you people? Don't you know who I am? I'm baby dammit! Where is my boobie? What have you done with the brown haired woman? Give in to my demands or no one sleeps!"

He's sleeping now, tired from the trip to the cardiologist's office. Just regular appointment for an EKG and to increase his dosages. I asked the same thing I always do. "Sooo, do you think his SVTs has anything to do with the Hirschsprungs or the time in the hospital or the deep line or sepsis?" Nope. Just a coincidence.

This trip to Phoenix was very difficult. I didn't feel emancipated with the opportunity to sleep. Instead it felt like only a shell of me was gone. I really did leave my heart in San Francisco. All I wanted was to be with my baby. Instead of feeling vindicated that he had cried and ran them ragged, I wanted desperately to console him.

Next week school starts and I will change to part time. I should be excited. Truthfully, I feel guilty. Matt says I shouldn't. People change jobs all the time without a second thought to their employer or peers. I know my boss would put her family first. Yet, yet... I do have guilt. I met with my boss yesterday. She asked me what we needed to do to get my workload down to parttime. She emphasized that they wanted me to work part time so that I could graduate on time and move back. "You are moving back, right?" What can I say? Should I tell them that I'd much rather go to a mid-size town in the Pacific Northwest where I could get a much higher position at a smaller hospital? That AZ is on the list as a safety only? A just-in-case? No, I can't tell her that. I need this job to last 10 more months, and at part time. Why would they keep me on part time working from home in another state if they knew I was leaving? So I was evasive, and somewhat misleading, while my true side tried to give hints. And I feel bad about it. I can say I'm doing it for my family, but I wish I could just tell her. I just don't see the possibility of getting a similar situation to this one, which I need while Jack is a baby and I'm in school.

Sometimes I doubt if what I'm doing isn't a great mistake. I've tried to continue my career while being home with my babies and while going to grad school. The cost has been much higher than I expected. And everything is done only part way, never great. Will I always have doubts? Will I ever discover the optimum answer?

Princess Time

2005-08-19T10:39:00.000-07:00

Disneyland was fabulous. I won't bore you with the details, just a few things I promise:

Janie wore her sleeping beauty costume all day.
4 different Japanese tourists at different times asked to take their picture with her. She told me later it was because they thought she was the real sleeping beauty. I figure she could have a great career in Japan.
The goal of the day was to get the autographs of all the princesses. Janie would say things like "We're not going on any more rides until I find Belle" which would stress me out. Thankfully I'm a pro stalker and while it was tricky, together we did corner every one.
Some mothers go too far in getting princess autographs, such as put their kid in line for one while taking off with the kid's autograph book to get another. Look lady, the person signing is only an actress, not the real character (which is a cartoon by the way), and the autograph is only as valuable as the experience you child gets in meeting the character. If it were only about filling the book, then just hide in the bathroom and sign all the characters' names to all the pages yourself.
I looked like one of those mothers at one point. Janie was riding a ride with my friend from AZ (who we met up with that afternoon) while I stood in line for Ariel. She was the last princess we needed, and it was only 10 minutes until she stopped signing for the day. I looked a little funny standing in line to meet and greet the mermaid, holding the autograph book and pen, without my little girl accessory. All the sane mothers gave me sad looks and sighs while they shook their heads over thoughts of what kind of grown woman collects princess autographs. Thank goodness she finished up the teacup ride and got there before I got to the front of the line.
My arms nearly fell off that night trying to carry Janie from It's a Small World to our hotel room. I could carry the little princess short distances before putting her down and having the literal sleeping beauty take a few steps on her own. She would then either drag her feet or walk so slowly that we were nearly standing still, too exhausted and falling asleep while walking. Then I realized what else makes daddies great on such days.

Speaking of daddies, after our first night away, Matt called and told me "We really need to do something about Jack's sleeping habits. He woke every 2 hours! ALL night. I didn't get Any sleep. I'm exhausted. Stop laughing, this is Serious. We Have to do Something. This isn't right!"

Really? (insert evil snicker here)

I'm too excited to sleep

2005-08-12T10:35:00.000-07:00

On a whim, from a flurry of last minute planning, from sheer happiness and excitement, Janie and I are going to Disneyland tomorrow! We're flying out tonight, doing the big D all day tomorrow, then flying back Sunday afternoon. Just Janie and I, and the pump of course. Matt is happily staying home to care for Jack - for 1 day and 2 nights, when I will be having a ball and/or sleeping soundly. And you can't wipe the smile from my face.

Next weekend I have a school function, and then I'll be going to Arizona for work. And the following weekend we're going on a family camping trip. What's with all this activity? It is the last minute flurry I have gotten together before school starts again and my weekends are for studying. Oh, and we'll be poorer then since I'll be working part time. Like the little grasshopper I am, time to hurry up and party and not worry about the winter.

And I need to spend time with Janie. Just her and I. She's been such a good sport about all the many dealings with Jack. She used to be our only, our center of attention. She lost that spotlight more than most and I want to let her know that it's good to be a big kid.

We told her last night so I'm sure that today at school she's broadcasting it to every child and teacher. "I'm going to Disneyland." in a 4-year old bragging way. I tried talking to her about being nice because the other kids don't get to go, but I know that she'll want to shout it and dance as she does it. It's more of a self-involved happiness than anything maleficent.

What she doesn't know is that she will be having breakfast with the princesses tomorrow morning. The Princesses. Oh boy.

I'm going to miss my baby terribly. Especially at night. Sure, I'll be sleeping, but I'll be reaching for him. I love him so.

Matt has big plans for movie day all day tomorrow while he's with Jack. He's gone out shopping to get himself lots of good food and drinks to really enjoy the weekend.

---
Oh, I got a crack up on my misspelling of the word winches. My husband would have loved to have used wenches instead. Especially ones that serve beer.

And thank you thank you regarding the note that my son may not need any extra water or anything. Anything I read tells me either nothing on the subject of post-surgery or says there will be dietary and dehydration considerations but doesn't say exactly what. I suppose that's because it differs by how much intestine is lost. There's also a percentage who will continue to have issues with 'accidents' and diaper rash is supposed to be an absolute nightmare. Oh, and toilet training will take longer. Such is the fun of Hirschsprungs.

Sometimes I think my life is about 75% poop. That's not to say that it's bad, just a focus on a subject that I usually wouldn't discuss. I guess Jack has demystified the poop. It is what it is. The ability to poop is an extremely important function. Without it, my son almost died. Now he has it in an unconventional manner. He poops out his side into a bag. Still unbelievable.

This morning as we were changing Jack, Janie asked about when she was a baby. When we told her she didn't have a bag, she was genuinely surprised. She asked, "Then how did I poop?" "You pooped out your butt." Another surprised look. "How come?" "Because you were just fine. Jack needs a little more help, but he'll be just fine too." Four year olds just figure that whatever is going on in their house must be going on all over. It is normal, no question. And I LOVE that.

Junior High Fears

2005-08-10T09:47:00.000-07:00

Over the weekend we had a good old fashioned house moving. We moved Janie's playhouse from right outside the kitchen windown to the far end of the backyard, tucked under the lemon tree. This playhouse is huge and very heavy, so we've been debating how to move it for months now. Finally he took my advice, plus added his own spin. He tied ropes around the house which he hooked up to wenches tied to trees in the backyard. He then rolled the house on loose logs. He'd pull the rope through the wench, the house would roll, and I'd grab the logs as they rolled out the back and put them in the front. Janie sat on her chair on the porch of the playhouse, directing and riding. Jack sat in his swing in the shade with a fan pointed at him, missing only the fruity blended drink with umbrella.

On Sunday I planted two bougainvillea bushes in the backyard. I love these bushes as they are nearly indestructible and have such bright flowers. Their thorns really cut me up as I hooked them up to trellises, but I was very happy I got to play in the backyard. I wanted to get out there before school starts again and I'm too busy.

I'm looking forward to school starting again. This year it means going to start working part time instead of full time. Yay! It can't happen soon enough. It's not like school is easy, but it gives me a chance to get out and be around grown ups. I love my children, but breaks make me far more appreciative.

Today I've got to order more bags for Jack. We tried out one of the many varieties the ostomy nurse had given me and like the one with the spout. I didn't try the flange ones. They are adult or bigger kid size so just look too huge, plus they just look too foreign. I guess no ostomy bags will look natural, but these are just too different than what we're using and my tolerance level for these types of things is very low.

Sometimes my mind goes off, kind of James Joyce-ish, flowing all over the place. I have a few of his first ostomy bags saved and his doll with the stoma (part of the intestine that sticks out). These I will show him when he gets older. He's going to ask about those scars. I suppose its sort of like the sex talk in that you only explain things as far as they are able to understand them and want to know about them. By then I hope to have the wisdom to explain it to make it all sound very normal and fine. Just fine. No problem. Sure. Then I thought of him taking gym class in junior high school. Undressing, the other boys will ask about the scars. As long as Jack is fine with it, I'm sure he can convey that it's no big deal. Battle scars, very cool. But what if his gym teacher is an @sshole? That although I have given explicit instructions that my son must remain hydrated, that the mean guy with the whistle decides to exert his power and deny my son water. Toughen him up. No special treatment. Then what? I have to worry about my son falling over dehydrated? I have to run down there and give the guy hell? Or do I have to send my husband to talk to him man-to-man? How 50's is that? And I don't want my son to stick out or be different. He can do everything the same and any big deal we make over it will defeat that no-big-deal feeling we're trying to give him. Besides, how important will water be? I don't know. I don't have a clue. And I can't find anything to tell me. Will the Hirschprungs affect his life after this next operation? Will he have any heart problems after this year? Can he still be and do anything that he wants as he grows older? Or will this always be around haunting us?

He fell asleep in his swing. If I was a good mother, I'd take him out and put him down in his crib. But, I'm a mother who'd rather him sleep and who knows that taking him out will mean that he most likely will not fall back asleep. So I'll let him sleep where he is.

At night he's been sleeping in his crib and I've been sleeping in my own bed with my husband. Imagine that. He still wakes up every 2 hours to eat. I could work on fixing that by not feeding him every time, but no way. If he needs to eat, at this age and considering his circumstances he will eat. Perhaps that spoiling him just because of his condition, or perhaps it is just making sure he is getting all that he needs. I actually like laying him down in his crib. The nursery is really nice; the best room in the house. The walls are two blue colors, one for the ocean and one for the sky. There are boats, lighthouses, seagulls and sandcastles recurring throughout. And the crib, the one I got from craigslist for a steal, is really beautiful and sturdy. I go in there and I immediately breathe deeper and feel calmer. I lay him down and start up his fishes. He looks like an angel when he sleeps. When he wakes up, he usually starts crying right away. I'll go in and find him all red in the face with tears down his cheeks and puddled in his ears, and a hurt abandoned look. I smile and try to put off the vibe that he's overreacting. Hey, I was only gone a second, really. And you were asleep in this beautiful room. When I pick him up, he'll look around suddenly interested, but we don't stay long. It's off to another room to change him and empty his bag, then feed him. The endless cycle of eating and pooping and sleeping and waking. Sure, it will be nice once he starts talking and crawling, but I like how it is now. A baby. I have a little baby. And I wouldn't trade him for the world.

When I'm sixty-four...

2005-08-09T10:40:00.000-07:00

I think about my life a lot differently now. I'm 34, so when Jack is my age I'll be 68. That's nearly 70, and pretty old. I want to help my children, spend time with them when they're parents. I suppose that is the true side of having children later in life. We don't get to be grandparents for as long as if we had had them earlier.

My mother had me when she was 22, and I am her second child. She's still very young, vibrant and energetic. She loves to run Janie to the beach or get down on the floor and play with her for hours.

For me to do the same for my grandchildren, I need to take care of myself now. I want to be a young 70. Maybe only look 50. Still exercising, travelling, reading, and playing. I don't want to be wearing grandma clothes and have that short curly white hair. I want to still be able to wear pony tails if I want, and drive something small and sporty.

And I want to live a long life. My paternal grandfather died at 94. He was still living on his own in his house. He had fallen into some glass and the hospital accidentally gave him a morphine overdose. My father didn't even sue or get that angry. Accidents do happen, he was very old, and a morphine overdoes is not a bad way to die.

My maternal grandmother is still alive at 90-something. Sort of. She has dementia so she has no clue who anyone is. The last time I saw her was 4 years ago. She didn't remember me or my mother, but kept asking for my older sister. And she thought her husband, who had died 20 years earlier, was still alive.

I don't want a long life without my mind. And I want my body too. Maybe not all that it is now, but a strong heart and ability to get around.

If I hadn't been infertile, my youngest child would now probably be 5 instead of a baby. That doesn't sound like a big difference, yet to me right now it seems to be. I guess that's because I assume he'll have his children at the same age I had mine, so it's always doubling the difference.

The benefits of having children now is that I'm in a much better place financially. To me this means security as I'm not so much into material things. And next year we plan on buying a house in a good place to raise children, hopefully with an acre to play on. That wouldn't have been possible before.

Also, because I keep figuring out how old I'll be when they're my age, I'm trying to live my life in a healthier way. More fiber. Less sugar. Now, for the exercise I've been putting off but that really makes me feel better.

Very Quick Sleep Update

2005-08-06T11:50:00.000-07:00

For the last 2 days and nights, I've been walking around a different person. I've learned that if I lay Jack down in his crib, he will fall asleep. Sometimes he needs his pacifier, and sometimes his Ocean Wonders fish thingy playing the ocean sound, but he doesn't cry. He goes to sleep. Usually closing his eyes before I make it out of his room. WOW!

He's still waking up every 2 hours at night, that hasn't changed. I'll get up and feed him for the first time. For the others I wake Matt and send him to get Jack and bring him back to me. Then I feed him and send Matt back to put Jack back in his crib. (Matt is starting to get an idea how often Jack wakes, and how important this sleep thing is, but he's not complaining at all.) And Jack doesn't cry when he's going to sleep, only when he's waking up. And I don't let him CIO yet, but feed him then put him back down. Later, when he's older, long after his surgery, we'll eventually get rid of that too.

It's progress and seems to me some sort of miracle except I don't want to use that word lightly. Everybody say "Yea!"

You Can't Handle the Truth

2005-08-04T10:34:00.000-07:00

This morning I had an appointment with Jack's pediatrician. I brought Jack along, but I knew it wasn't about him. The problem is that my boy doesn't like to eat or sleep. He still wakes every 1 1/2 to 2 hours during the night, has only 45-60 minute naps, and has only 5 minute feeds. Jack has gained a pound in 3 weeks, so he must be getting enough. Actually, he checked out just fine. Then the doctor turned his attention to me, and I had trouble keeping it together. You see, it was never about Jack, but was all about me all along.

It could be that Jack's temperament is just a little more active. Probably is. And maybe his heart meds could have a contributing factor. Maybe, but their main side effect is sleepiness as made most evident by the warning label stating that he not take that medicine and then drive or operate heavy machinery. Janie was such a contented and good baby, that I had all sorts of slack. She slept, she ate, she never cried. She was pleasant and happy in the morning and evening. I figured that I knew what I was doing. That I must be a good mother to have such a happy baby.

With Jack, I doubt and question everything I do. Although things may have worked fine with Janie, with Jack they don't. I have no slack. It's all new again. Like I don't have any experience being a mother. Everything I thought I knew is gone. My tricks don't work. If he could, he would laugh at my attempts.

So, based on the doctor's strong recommendation and what I always knew I had to do but just couldn't do it, tonight he will be moved out of my bed and into his own room. "He does have a room, right?" asked the pediatrician. "Oh, yes. A beautiful nursery. Of course he just hasn't spent much time in there." Not yet anyway. But, tonight he will sleep in there for the whole night.

The question now lingers over the bed in there. Jack will sleep in his crib. Will I sleep in the bed in his room or in my own room? My friend laughed at this question. "Pazel, the idea was not to move him just for you to follow. But to move him and separate you two so that he can learn to sleep and you don't jump up at his every sound." I know, I know. I get it. But dragging myself down the hall every 2 hours does not seem like the right way to get extra rest.

When Janie (see, the comparisons continue, poor little kid) transitioned from the bed to the crib, it was at 3 months, and it was easy. No fuss at all. And we did it because she was sleeping so well. We didn't institute CIO until she was 7 months and clearly didn't need a night feed anymore. Now with Jack at only 4 months, I could let him fuss and cry a little, but I can't imagine CIO, not even for 30 minutes. I just can't. He may be hungry. What about his heart? And I don't think I can stay away.

Over the weekend, I tried to sleep in the other room away from Jack, with Jack and Matt sleeping together. It lasted an hour. I couldn't take it. I knew he would be reaching for me, be wanting to cuddle and to nurse, and was upset that I wouldn't be there for him. I had gone away to get some rest, but it was impossible because of my own defeating thoughts.

Last night, I tried to work on my computer for a bit outside of the bedroom. Jack was sleeping in my bed. He woke up at one point crying and very upset. When I went to him, he wasn't hungry, he just wanted me to pat his back and know I was there. And I felt horrible for having not been there. I decided then that he didn't need to be transitioned until probably a month after his surgery. December. Maybe January. I could sacrafice my sleep for him. He'll only be a baby once.

But, you see, this is the problem. I coddle him. Sure he's only a 4 month old baby, but he doesn't know how to soothe himself or get himself back to sleep, and he should. And he needs this skill, and I need him to get that skill or I won't be getting any sleep. See, the rational mind tells me that this is the answer. Then the irrational heart refuses to hear it. She puts her hands over her ears, closes her eyes, and starts saying over and over "but he needs me. I know he needs me." And due to this stubbornness and guilt, I turn into a sleepless zombie with a cranky baby unable to enjoy his babyhood, having to make an appointment with his pediatrician to hear the obviousness of it all.

So okay, it has to get better. I have to try for both of us before I lose my mind. I need to sleep. Really. Really. What's the worst that could happen? No, really. What is the worst?

Teething?

2005-08-02T22:20:00.000-07:00

Today Janie fell off the jungle bars "into a starfish" or in other words falling flat down all spread out. Poor thing hurt her little hand so we went and bought some princess bandaids.
I had to ask, "If Princess Ariel had a cut, what kind of bandaid would she use?"
"Hmmmm. Janie and Jack bandaids."
Well, that makes sense.

I love kids for how they make me laugh. With Janie, she tells me all sorts of things. Like, she's going to grow up and marry Jack and we will all live in this house. And she will have 14 babies, all with stomas. 7 boys and 7 girls. And we will need a bigger van to fit all the car seats. And she, grandma, and I will all breastfeed them since we will need more boobies.

With Jack, I use him as my little puppet. I take his hand and mimic him scratching his front. "Yep, yep, yep."

Or I will sing the song from the hotel commercial but with Jack's new words.
"I've been everywhere man. I've been everywhere man.
I've been to the kitchen, bathroom, living room, dining room, backyard, bedroom.
I've been everywhere man. I've been everywhere man.
I've been to NICU, surgery, EKG, recovery, safeway, walgreens, Lowes and Berkeley.
I've been everywhere."

It's just fun little things to do with baby. He loves the attention, no matter what it is.

Today Jack slept for only 2 1-hour naps. I truly do not understand this baby's sleeping habits. Babies are supposed to sleep so much more. He also doesn't eat much. His feedings are quickly over. Maybe 5 or less minutes per breast. That's all he's interested in before he starts fighting, arching his back and getting mad. It's not gas, I burp him. I've been wondering if he's teething. It's very early, but he constantly has his fist in his mouth, knawing on it. Jamie was born with her bottom two teeth (called neonatal teeth), so he may be early but that may just be what it is.

I offered him a bottle of formula today because I've been worrying about my supply diminishing. I know it has because he doesn't eat much, so he's not keeping me in milk. I don't leak and I don't get engorged. Instead of drinking the bottle, he chewed on the nipple.

I'm watching him. I worry. I can't help it.

Finally

2005-08-01T09:22:00.000-07:00

Friday night we had our first family portraits since Janie was a baby. I feel bad that we didn't take one in the last several years, but I was always busy with work, unhappy with my weight, or going through infertility. I just didn't feel like it. Now, I'm still unhappy with my weight and busy with work, but I'm very happy with this little family we've created. It was a long time in the making. Plus, after I lose more of the weight, this picture will serve to remind me how far I've come.

Preparing for the pictures took all day. I bought and ironed clothes, got my brows done (putting "Dr. Brows" in my appointment calendar at work just in case someone wondered where I went), got my hair done, and got Janie's hair done. That last bit seemed extravagent, but she needed a haircut and it was cheap. Besides, she loved that we both got our hair done together.

Jack refused to smile during our family pictures, and threw a fit during his pictures with his sister. Maybe it was the photographer being so close during his individual pictures, but he flirted and smiled. For those pictures, we had him half naked in a basket with netting hiding the diaper and bag. I didn't want his babyhood to go by without naked pictues, but I didn't want pictures of his bag either. The photographer was a champ and didn't ask questions, just smiled and goo-ed at him while he stared and smiled at her chest.

For the family pictures, the posing would start by having me sit down first. Then Jack would be put on my lap, Matt posed behind me, and Janie on my side. I felt like the center of my family; that I was surrounded by all we had created. It was not hard to smile. Who cares about the weight or my hair or our clothes. It was us, together, and happy. Finally. I don't know if there is a more complete than that.

My Night and Morning

2005-07-28T10:52:00.000-07:00

6pm - Feed the baby, hand him to Matt, and then fall asleep, not even caring about dinner.

9pm - Wake up. Jack napped in the swing for an hour while I slept. I feed the baby. I can't lay him down because he needs his meds in an hour.

10pm - Give Jack his meds, then feed him again and lay down with him. We both fall asleep.

Midnight - Feed Jack.

2am - Feed Jack. He cries, arches his back, kicks his legs and refuses to go back to sleep. I change him, then rock him in my arms until eventually he relaxes and is out.

3:30am - Feed Jack.

5:45am - Wake to the feeling of liquid rushing under me. I smell it. It's only pee, thank God. The diaper was too loose around his legs. I fix the diaper and feed Jack who is now screaming again. I then put a towel down on my side of the bed as I'm too tired to change the sheets. Please baby, just a little bit more sleep. He stops crying, but is now up for the duration. Matt gets up for work, changes Jack, gives him his meds, then gives him back to me as he leaves.

7am - I feed Jack and he finally falls back asleep, so I do too.

7:30am - Janie is up and climbing on my bed. "Good morning Jackie Jackie Jackie." Janie pleeease don't wake him up. But it's too late. I've got to get up and get myself, Janie, and Jack dressed and ready for the day.

10:00 - Feed Jack.

10:30 - Lay him down in his crib. He's exhausted. Right now he's not sleeping, but not crying either.

I don't understand what keeps him going. Yesterday he took only 3 1-hour naps, at 10am, 1pm and 6pm, and that's it. Then at night, he's up to eat nearly every 2 hours, and sometimes crying. I don't feel any new teeth coming in. A couple of times I've felt like calling the pediatrician and asking him to check him out, but I can't imagine bringing him in just because he won't sleep. Babies sleep sometime, right?

Meanwhile I'm still exhausted. Why does he eat so much more during the night than during the day? And how can he still be awake?

While Matt had offered on the phone yesterday to take Jack for the night, when bedtime came around, it wasn't meant to be. HOWEVER, Matt has the day off tomorrow (thank goodness because he's been working the past few Sundays). So tonight I will sleep in the other room and Matt will sleep with Jack. It's not as easy as that, but I've got to try. My pride, my vanity, my desire to want to be the good mother are being taken over by complete sleepiness and inability to do anything. My whole day is spent taking care of cranky Jack and not working or cleaning or doing anything else. He's my priority, but I need a break and without sleep or naps, I'm barely alive.

I don't get it. I hear him right now, still awake, starting to fuss. Hey kid, it's nap time. Sleep. At least one of us needs to.

Got to go, he's crying.

Circular Error

2005-07-27T15:09:00.000-07:00

My grip is starting to slide again.

I had a dentist appointment yesterday. I brought Jack with me as it was during his nap time and I thought he would sleep. He didn't, instead he started to fuss. A dental assistant offerred to pick him up and I quickly had to push away the hygenist to sit up and tell the assistant that he has a bag, but don't worry about it. She took it very well, was still happy to hold him, and didn't ask any questions. And neither did anyone else. While I was relieved that they didn't (because I just didn't feel like getting into it), I got a little down that I have to worry about it. I want them to see him, and not wonder what's going on under his clothes.

I have two cavities, so I need two appointments for an hour each. As much as I hate getting cavities filled, I'm having more of a problem trying to figure out when I will set these appointments. I don't want to bring Jack in again because they shouldn't have to babysit him during my appointment. And they are closed on Fridays, which Matt sometimes has off. They open after he's gone to work and close before he's home. And it seems like so much hassle to ask Matt's aunt to come out just for my 1 hour appointments. I don't know what to do.

It seems like such a simple task, right? See, those are the killers. When I have simple tasks that I just can't accomplish. It's not just the energy or the time, it's just... I can't put my finger on it.

I didn't set the appointments yesterday since I didn't know what to do. They called today, and the receptionist had a hard time understanding what I was saying. I need to arrange sitting before making the appointment, but I don't know when to arrange the sitting since I don't have an appointment. It's a circular thing.

But really, it's that thing again. The shadows. The verge of tears for no reason thing. Looking sadly at unmade bed but unable to get myself to make it. Hearing his cries boring into my soul, but unable to help him. (Why has he all of a sudden decided that he can only breastfeed lying down? Screams and fights when I try to sit and feed him, but at the same time sucking on my neck when I hold him up. Hungry, but stubborn as hell. And as soon as I lie down with him he's calm and nursing fine.)

Matt called and offerred to sleep with Jack tonight so I can sleep in the other room. He called it preventative maintenance. While I should be happy about this, instead I feel like a bad mother. I can't do what he needs. I'm not strong enough. I'm not good enough. Yet, I do need the sleep and I feel guilty for wanting it. It's not so much Jack who has been keeping me up lately, but some insomnia. Thinking about all that I'm too tired to do, which makes me too tired to do any of it the next day.

See the circles? I need to get better to get better. I need to be strong to get stronger. Yet, if I could do that I'd already be doing it, now wouldn't I?

Ever see the movie Groundhog's Day?

2005-07-25T14:56:00.000-07:00

At 3:51am Jack rolls towards me to breastfeed. I reach for him and touch squishy. Bag leak. Yuk. In the bed. Yuk. And we had just changed his bag a few hours ago. So now I had to lay there and let him nurse while trying to hold the bedding up with my elbow and keep my poopy fingers towards the sky. Meanwhile my eyes remained closed and my mind drifts in and out of thought. Can a person sleep with poopy fingers in the air while simultaneously pointing top shoulder down so as to direct breast into baby bird's mouth? For a few minutes, yes.

Eventually I get up. I must wash hands first, and don't touch anything. Then pee. Then wash again. I start gathering supplies for the bag change. There wasn't a new one cut (has to be custom cut to fit his ever changing stoma), I sit on the corner of the bed with my template, needle point nail scissors, and pencil. In the soft glow of the bathroom light, trying in vain not to wake the baby, I draw the design from the template onto the back of the pouch. Then I poke in the scissors to start cutting a hole, but I accidentally poke all the way through and puncture the pouch. Start over.

Get a new bag. Draw the design. Carefully poke in scissors. Work on cutting out the hole. I wonder if my kids will be ostracized in school because their mother is an atheist. They won't really be atheists since they wouldn't have made any educated choice yet. Not at that age. So what would they really be? Religion ignorant? Kids don't know what that is. But how would the kids know I was an atheist since I'm still mostly in the closet about it? Hold it over him to see if it fits. Needs to be a little bit bigger here on this end. Use scissors to cut hole larger. Crap. I cut that part straight through the pouch. Damn. Start over.

Get a new bag. Draw design. Carefully poke in scissors. I'm not going to... Damn! I poked a hole in the bag again. This never happens to me. To Matt, yes, but not to me. If this continues, I'm never going to sleep And I'm going to run out of bags. Start over.

Get a new bag. Draw design. Carefully, carefully poke in scissors. Work on cutting out the hole with some extra size. I wish elementary schools went all year round so I could take the kids for long winter and spring vacations. Summer is great, but why have three months in the summer when you can have one in the summer, one in winter and one in spring? It would be so much better for the kids and the parents. Who would oppose it? Teachers? I'd think they'd want the breaks stretched out too. Seems like the school year can get awfully long. The teachers and kids both must get burned out in the spring. Check it, perfect. Thank goodness. Remove old bag. Clean baby. Put on skin protectant. Use stoma adhesive (caulking), "just like icing a cake", only it's 4:15 and I'm icing a stoma on a wide awake, smiling and kicking baby. Someday I'm going to ask the ostomy nurse how many moving cakes she's iced at the crack of dawn. Put on new bag. Attach closure. Done! Change his diaper, clean up area on bed, wash hands, then back to bed for more feeding. Please Jack, go to sleep, Mama's reeeal tired.

About 90 minutes later, Matt wakes up and sees all the discarded bags. What happened?
4am bag change. Oh man. Mmm,hmmm. Roll over, peek out eyes to aim nipple into waiting mouth of newborn rooting puppy, and feed again. Try to sleep in side position as I wait for him to finish. I wonder if he will get a bald spot or worse yet a flat spot on the side of his head because I'm always on his right. tomorrow night I'm going to have to remember to sleep on his left. Switch sides now and then. Suddenly the alarm goes off. Is it morning already??? Okay. Might as well get this day started. But first let me feed the baby.

Can't just get a haircut

2005-07-23T17:45:00.000-07:00

I finally got my hair cut today! 3 inches gone and finally some style, besides the pony tail or harried look I've been sporting lately.

It was a new stylist. We talked about our kids and pregnancies. I remarked about how he was so huge, I had problems breathing and ended up on some asthma inhalers during my pregnancy. Just small talk. Later during the conversation with the stylist I remarked about how I was still not getting much sleep. She countered that I needed to force him to a schedule. Just don't feed him at night. For some reason I just had to reply that he's had health issues so I can't.

Next thing she is guessing that the asthma medications I took during pregnancy must have caused it. When I said it was genetic, she asked then why my husband and I don't have it, or my daughter. She told me that they were probably saying it was genetic so that they wouldn't get in trouble for the medicines I took during my pregnancy. (Never mind that my ob/gyn and the pediatrician/neonatologists aren't connected so have no reason to cover for one another.)

You'd think I'd be upset by her words, but I'm not. I know she's wrong, just uneducated. She doesn't know about recessive genes. I'm a little ticked, but mainly I feel sorry for her.

This just proves my point that it always comes back to the mother. If something goes wrong, I must have done something to cause it. I think it comes to people wanting to separate themselves from bad things happening to them. It must be something I did or took or maybe the IVF or ICSI or my age. It can't be that sometimes bad things just happen to good people. There must have been something I did to deserve it, and as long as they don't do it, it won't happen to them.

Thus old wives tales are born. Don't raise your hands over your head while pregnant or you may strangle the baby with his cord. In this case, don't wear maternity pants that don't stay up or else your baby will get hirshsprungs.

Hey, something bad happened. I didn't cause it and I couldn't prevent it. And, it is so rare, it won't happen to you so don't worry. Actually, compared to the fact that he almost died, I feel pretty damn lucky just to have him. There are worse things than colostomies.

When I was pregnant with Jack, I had an amnio which came out normal and perfect. The two genes connected with HD were just found 3 years ago. They were discovered by a Johns Hopkins study on Old Mennonites (Amish - and no, we don't know of any in our families) who have a HD rate of 1 in 50 instead of 1 in 5000. HD is just not checked for in an amnio, and neither are many other things that are genetic.

If I'd known about it, I wouldn't have ended the pregnancy. I get unnerved when people connect amnios with terminations because amnios are really about deciding to know and be able to make choices. If I had known about the HD, I would have still kept him. The difference would have been that the doctors could have treated him starting at birth. He wouldn't have had to endure so much in his first 6 days. And I would have had plenty of time to learn about HD before his birth. My NICU experience would have been very different.

OR - and this is what I want from science - OR...
They discover it during the amnio or PGD or such, and because of stem cell research they are able to give him the ganglion cells he needs while still in utero to complete his system, so he's born with a fully functioning colon. HD would be fully treatable before birth. Heck, I'd take even after birth.

This won't help Jack, but I can't help but see some hope in stem cell research for babies born with HD.

Of course I'm not a doctor. I don't even play one on tv. What do I know, right? Except that I harbor some optimism that the future will be better for kids with HD, hopefully in my lifetime. I wish I had more ideas on how to get the stem cell researchers now gathering here in California to spend some of that fabulous tax money on using stem cells to fix HD. Anyone with ideas or experience?

Anticipation, It's Keeping Me Waaaaiting

2005-07-22T11:53:00.000-07:00

Isn't it funny how you get to know people you've never met via their blogs?

My boss once told me about her friend who had HELLP and I replied that my friend did too. I was referring to Julie at A Little Pregnant. I've never met her, seen her picture, or talked to her, but I felt sick when her baby was born early, and ecstatic when he got to go home.

There's so many other women with blogs who've had babies this year that I've celebrated. Infertility is Funny, Life's Jestbook, So Close, RE's Muse, Can't Be Broken, Rabbit Lived,... and so on (and some I'm still waiting on.) Sure, maybe it's all fiction. Or maybe I'm nothing but a voyeur. But I feel part of their lives. I feel like they're my friends.

And now Chez Miscarriage GettupGrl herself is having her baby. YAY! The idea that she's about to go through the greatest kind of joy has me over the moon. Again, a stranger somewhere is probably at the hospital as her surrogate is in labor and here in California I am smiling big enough to have tears. Incredible.

As the writer of my own blog, I feel very close to anyone who reads or comments. I love you all and trace your blogs. (My own list of blogs to the left needs serious updating to reflect what I'm actually reading now. Half those links don't even work anymore!) I feel like you're my friends and have referred to you when speaking to my husband. "One said..." You've given me so much encouragement and love and advice. It makes me think of myself as more than just a fan of the blogs I read.

Someday there will be a better term for this close friendship with strangers. In the meantime 'friend' will do.

And Grrl, you go!

I trip on crack in the sidewalk

2005-07-19T14:14:00.000-07:00

There is no warning really. There is no learning from experience or expectation of history. In other words, I should know better but I'm always surprised. Because I think I know better.

Today was the appointment with the ostomy nurse. This is not to be confused with his appointment with his pediatrician last week for immunizations, or with his surgeon last week for post-op wound review, or with his cardiologist tomorrow for his heart. We hadn't seen his ostomy nurse since he was in the NICU. She's the one who taught the class on changing his "appliance" and ordered our first set of supplies. She's professional, she's smart, she is enthusiastic, but not cotton candy-ish, just not going to feel sorry for us, which is good. She's everything I want and need her to be, and yet she sets off a panic in me.

I hadn't expected it. I've been changing his bag for 2 months now. It's a fact of life, something that must be done, and although not my favorite thing. It is part of having my son so I try to do my best. I'm not blind to it. It would be hard to be. When it was hot and he was sleeping next to me in just his diapers, it wasn't just him lying against me but also his bag. And in pictures of him with just a t-shirt, the bag hangs out the bottom, so I try to crop it out, or just dress him in onesies next time.

We hadn't seen the ostomy nurse simply because we didn't have an appointment with her. I had one with everyone else, but not her. Meanwhile Jack has been growing and as he grows so does his stoma. While cutting a hole in his bag to custom fit over his stoma, I've been getting closer and closer to the line marked "do not cut above this line." So I made an appointment to see her.

After checking him out, she went digging around in her cupboards pulling out every size and sort of pouching system that there is. "These have a great flange feature." "These are like those but smaller." "These have a special closure at the bottom." "These have a special pour spout." "These are more one pieces, and these are the two piece systems." And on and on. Meanwhile I stared at the flange one and blinked back tears. I tried to paste a smile on my face, but I don't think it mattered because she was too busy finding ever more variety of bags.

It was the flange that got me. (Flange. Flange. How many times can I say flange.) The 'system' is huge, like it would cover his whole stomach. She didn't have the small size but wanted me to try the flange system and if I like it she can order smaller. The flange is like a large circular gasket. You cut out the hole, then put the moleskin on with the attached flange. Then the bag pops onto the flange. The flange lets you pop the bag off and put a new one one without removing the moleskin. It's not really called moleskin, I don't know what it's called. It's just the velvet-bandage part that glues to the skin. It has to have a really good seal so that stuff doesn't get on his skin and make a mess.

To me, it seemed a strange contraption. Large, almost the size of my fist. Circular. Looked sort of like an automobile part but in a fleshy tan color. And I'm supposed to put this on my baby.

It's probably a fabulous invention. So helpful in changing of bags. So efficient. But it was a horrible reminder that my baby is not normal. He needs this stuff. Even after his final surgery he won't be back to normal or good as new. He'll be missing half his colon and have some nasty scars on his tiny belly.

Over the 4th, my brother and I were both staying at my Mom's house with our kids and babies. His daughter is 3 weeks younger than Jack. After changing her diaper but before dressing her, he put his hands on both sides of her belly, put his face down, and gently blew a raspberry on her tummy. She laughed and smiled so he did it again. At that moment I realized I had never blew a raspberry on Jack's tummy. And I had never kissed his belly button or the long scar from his biopsy. And I'm his mother. If anyone is going to kiss his belly, I should have, at least a million times already.

Am I treating him the same as if all was fine? No. I don't let him cry long. I let him snack and wake me up frequently. When we're going out, I empty his bag so that it won't get super puffy and become noticeable under his clothes. And when someone else goes to hold him, I wonder if they're thinking about it. If they can hear it crinkle when they pick him up. If they are afraid of it. It. The bag.

I hate that bag. I do. Here it is keeping my son out of the hospital and I hate it. If it were just his heart having problems, you wouldn't see anything. He has to take his medicines but otherwise he looks fine. With Hirschsprungs, now we've got tangible evidence that there's something wrong. His stoma and the bag that covers it. A clear bag, usually with a silly sticker Janie put on it, and on the inside you can see his liquid poo. Pretty disgusting isn't it? It isn't pretty. Neither is a dirty diaper, but with that you just clean the child up and he's good as new. Clean and miles away from the poop.

Hirschsprung's is not an easy diagnosis. I don't yet have a 30 second elevator-ride explanation. Instead I usually say that my son has GI issues, and is on heart meds. I don't want to say Hirschsprung's Disease because it's not a disease but a genetic birth defect. And I don't want to say Hirschsprung's because they wouldn't know what it is anyway. To say that he's missing ganglion cells in his colon is not a better option. The more I explain, the closer I get to having to say something about his colostomy and I just don't want to. Besides, all anyone really wants to hear is how he'll have his final pull-through surgery and be moving his bowels normally and will grow up normal, the end. A happy ending. All the loose ends tied up with a pretty bow.

Meanwhile, we're not at the happy ending part but at the part where I've got to keep track of my sampling of these many appliances so that I can find the one I "like". Maybe I'll like it so much I'll brag about it to all my friends. Or maybe I'll like it so much that I'll want to get one for myself. Or take pictures of it. Or show it off at parties.

Okay. My own pity party must end. I can't afford to dwell in this place. Time is short. My baby is beautiful, alive, and relatively healthy. He's home, he's sleeping, and what more could I really ask for anyways? A final sigh, a sip of diet pepsi, a look out the window at the sunshine and blue skies. It's time for me to get back to myself. I can't let a little whitman's sampler of colostomy bags derail me. I can keep it together. I will give him a great life. And someday, I will look back at all of this and wonder what the big deal was.

Adventures without baby

2005-07-18T10:02:00.000-07:00

The thing about travelling without my baby is that I look at every baby at the airport and miss him more. And I get jealous that these travellers have their babies and are probably travelling somewhere fun for pleasure than to the hottest place on earth for work. Of course when I took Jack with me on my last trip I was jealous of every solo traveller who got to read or sleep on the plane, and move so unencumbered and light. Truth is, it was nice to fly alone but once I got there I felt too far away from him. Without checking him with my bags, I can't see how I'll ever get to have both.

I spent two days and one night in a very sunny Arizona. Work was work. The night without the kids went by very quickly because I mostly slept through it (YAY!). Matt told me everyday how Jack was sleeping long naps, eating big meals, and generally being a very happy baby. Maybe it was the fortified breast milk or maybe it was the break from the frazzled mother, but part of me wishes he had the more usual irregular Jack.

The first morning I was gone, Matt called me to tell me that Jack rolled over. Several times. My little one chose the moment I left the house to do one of his firsts. Isn't it just like that?

When I got home, I walked up to him as he lay in the bed, awake and knawing on his hand. I smiled at him and he burst out into a huge cry. Oh baby. Did you just realize I'd been gone, or are you that upset that I'm back? His next two feedings were very difficult as he fought off the breast, cried, then would suck like mad on his pacifier before spitting it out in disgust. My little boy loves the bottle. Sadly for him, I'm not ready for him to give up breast feeding and I'm not about to add pumping to the already full schedule, so I didn't relent until he was feeding normally again.

All in all, I can't believe that's it's Monday again. I feel like grabbing the sun and forcing it to stay still in the sky, or perhaps to shove it backwards to the east to give me another day off. Time is relentless and has no pity for me. Where were all those slow days when I was pregnant and counting down the minutes?

Hierarchy of Needs

2005-07-11T10:05:00.000-07:00

The strangest thing happened this weekend. Matt wore the sling.(!) I swore to him I would not take a picture or tell anyone we know. I don't consider telling the whole blogging community to be contrary to that promise. Go figure.

My husband is the picture of the blue collar guy. His job is to work high on the power poles (he cringes if I call them telephone poles), working on the wire. He loves to climb the poles rather than use a sissy bucket truck. His uniform is worn jeans, long-sleeve button-up shirts, and work boots. His hands are calloused, some kind of tough guy thing, too cool for gloves.

(When Jack was in the NICU, Matt didn't work for 3 weeks and had to constantly scrub his hands and arms to go in. While my hands got red and dry, his hands got softer. All the tiny cuts healed and his nails looked almost manicured. I fussed over his hands and repeated how much they reminded me of his college hands. So much softer for holding and a turn-on for a woman who just wanted to be held. Of course eventually he went back to work and those hands were history again.)

I digress. Sorry.

Anyway, he was wearing his jeans and a Berkeley t-shirt, and then the sling. I think he finally got what I was saying about Jack loving the sling and decided to try it. He put it on and realized how quickly Jack became quiet and happy. His hands were free, the sling was comfortable, and I couldn't stop smiling. Aaaah, help has arrived. Thank you. Really. Thank you.

Saturday morning Matt took the baby and Janie and let me sleep a little while. I still have to feed him so it wasn't any large uninterrupted period, but it was extra sleep. Glorious sleep. I woke feeling stronger. Not at my full strength, but no longer hearing Scotty yelling from the engine room that "We're giving it all we've got Captain. There's no more power." Or in more realistic terms, the shadows have relented for now. They'll be back. They're very patient.

Matt wore the sling many times over the weekend. On Sunday his cousin watched Janie for a few hours so we went to Costco and then I went went to the grocery store ALONE. (Oh what an adventurous and exciting life I lead.) I think it's hilarious that what cheers me up is a solo trip to buy food when that used to be such a chore.

I think of Maslow's hierarchy of needs. This is a pyramid with Physiological at the bottom and Self Actualization at the top. The idea is that you can't get to the next highest level until you have fulfilled the needs at first the bottom steps; i.e. someone who is starving could care less about their self-esteem. In this case, when get so low on sleep, I fall down to the bottom of the pyramid, unable to get a basic physiological need taken care of. Nothing else matters until I can get that covered.

I thought about this pyramid and rewrote it for myself. It's upside down...

Physiological – Sleep, Glorious Sleep
Safety Needs – Money
Social Needs – Isolation from being home with baby
Esteem needs – Post-partum body completely prevents this
Self Actualization – Ability to have incredible sex again - Just forget it.

So when I got to go grocery shopping alone this weekend, it was temporarily reaching the social needs level on the pyramid (as however pathetic that is to reach it at Safeway), and made me happy. What a sap I am.

Jack is crying. Hungry and tired, poor little guy. Must run. No time to think at any higher level because my biggest job now is to take care of his most basic needs.

Jealousy & PPD

2005-07-08T09:35:00.000-07:00

I've come to the conclusion that Post Partum Depression stems from the growing realization that you won't be sleeping anytime soon, and resentment towards a husband who is getting his full uninterrupted 8 hours.

Sure, there's biological reasons for PPD such as the drop in hormones and probably some brain chemicals. And there are many contributing factors such as increased isolation, change in life, and significantly greater responsibilities. There's also the body's refusal to drop any more weight, the dark stretch marks, soft belly, too tight clothes, and unfamiliar chest, with all the accompanying self flagellation regarding said disappointing body. But at the end of the day, it all comes down to a little rest.

Right now I'd probably leave my husband for a man who offered to help me unpack from the weekend and watch the kids for 2-3 hours. Why can't there be some mandatory eternal courting by the chivalrous knight that evolves into something we really need and not the flowers or box of chocolates (although either is always accepted)? Does any man know the power of such actions? There is no greater aphrodisiac for a woman with a small baby than a few moments to rest and collect herself. Not every night, let's not talk crazy talk, but just once in a while.

I find myself taking long showers just for the relaxation of it all. Time to be alone, with hot water and the inability to hear anything outside the bathroom. The key is to lock the door, and to actually find time to do it. So I begin to resent my husband for taking his shower every day after work as it is his default and any other priorities (like child or baby) have to wait until this important task is accomplished. If only my showers were held to the same high regard. It is hard for me to imagine for myself the luxury of a daily shower. Once I got in there, I might not come back out. Good thing our jetted bath tub is out of commission. It would be an irresistible siren.

I feel powerless to take care of everything in the household. I can't get to my laundry or the kids' laundry, and while the kids have plenty of clothes, I am nearing the bottom of my short stack of non-maternity clothes I can squeeze myself into. Today I'm wearing workout clothes and won't be working out. There are also those suitcases, physical reminders of all that I'm unable to get done. One from the Arizona trip and two smaller ones from the trip to my mother's for the 4th. While I can understand having to unpack myself, why is it my job to both pack and unpack the children? When do they become our children?

And I guess that is the crux of it all.

Yesterday Matt asked me about my proposed trip to Arizona next week. After all that occurred last week, I still haven't bought the tickets, yet I would really like to go, and really should go. I have to be there for 2 days, one of which is his normal day off. During that time his parents will be visiting. He asked what I was going to do about child care for my trip. I? Why is it I have to make the babysitting arrangements when we are both going off to work? But I didn't answer him with this very logical question. Instead I calmly stated that I will be simply going to work. Much like he does every day. Just going to work and assuming that someone will watch the children. So with a big sigh, he said he'll take the day off. I didn't ask why his parents couldn't watch the children. And I didn't acknowledge his great sacrifice. Afterall, he doesn't recognize any of mine.

Is it wrong to constantly count the hours of sleep your husband gets? I can only go to bed after Jack's last meds at 11pm, then getting up every 1 1/2 to 2 hours for feedings. The nightly dance of the comatose mother, hearing the baby fuss, reaching my hand out blindly until I hit the touch lamp, balancing myself on my side with the boobie angled just right so that he can feed while I close my eyes, unable to sleep but not awake either. This morning the alarm clock woke me only to find that dear husband left without changing the baby. Jack's bag is an inflated balloon, tight with a night full of gas, threatening to leak toxic waste over all my bedding. Is it any wonder that I'm a little cranky? And isn't calling it PPD just a way to deflect any responsibility off the husband for how the wife is feeling?

Many women experience PPD, and I did before starting approximately 2-3 months after the birth of my daughter, exactly where I am now with Jack just turning 3 months old. I can feel the undertow grabbing my ankles and trying to pull me under. It hasn't taken over and it's not constant, but I can feel it threatening. How can I be sad when I finally have my babies? And why should I try to blame everything on everyone else? I need to break out of this box and just get things done. Yet, it is not that easy. There are other priorities, and there's something that keeps me from making it right. I can't put a finger on it, and I'm fighting against it. Maybe a nap would help or a walk or some unpacking, but I'm just too tired. Nothing serious here people, just trying to fight off the blues with a little anger and jabbing commentaries towards the person I love. I guess that's my "go to" in times like these.

While trying to fight off tears, I wonder why he doesn't recognize my bitterness for what it is? He didn't before either. Only Valerie did and after a month she flew in and saved me. How? She talked to me, made me laugh, helped me tackle some of those impossible tasks which were my daily defeats, and took me out for a day away from the baby to have some fun. She can't do that now. And I know that my husband, despite both my subtle hints and outright statements, can't figure that I should have any issues with tiredness or sadness, or figure that I need any help from him. He's not a Randy Yates, but part of me wants to start crying hysterically while punching and kicking him and yelling at him for not trying to help me when it's so obvious that I need him. My calm outward appearance hides my need for him. And because he doesn't see it, and because he doesn't help me, I slip further towards that black hole, and my tongue turns sharper towards him. Even when I flat out tell him I need help, he doesn't hear because he responds that he is so tired, and drags himself off for another 8 hours of uninterrupted slumber.

On the other hand, maybe I'm right. Maybe my PPD is just the manifestation of that growing resentment towards living in the same household with someone who gets all the same joy but minimal change in life or responsibility for our children. And even if it isn't the cause, it still doesn't seem fair.

Advice from a SAHM

2005-07-05T13:23:00.000-07:00

I just got back from my traveling adventure and am so disappointed that I can't comment on Julie's blog. Damn.

Jack and I flew to Arizona for my work. On both flights he cried at take-off and landing, but slept the entire flight. Hey, I think that's pretty good. I'll take it.

Jack stayed with my friend Valerie for my first day of work. Because Valerie has two other kids (2 and 1), she also had her mother and aunt over to help. On my way home from the office, I called Matt to tell him how wonderful it was to be away for the day. My productivity had been high. I got to talk to grownups, wear grownup clothes and grownup shoes (which killed my feet), and get lots of work done. I had training and meetings and loved it. Then I got to Valerie's and found out that my little angel had screamed all day. Hours non-stop. And each time he'd cry, her 1 year old would cry, doubling the crisis. And they tried everything to get him to stop, but couldn't. And I felt like crap.

In my arms, Jack was calm and happy and sweet. He melted and fell asleep immediately, apparently exhausted from his day of torture. The least I could do was buy dinner so after getting him off to sleep, I handed him over to Val's mother and Val and I ran to the sushi place to get some take-out. (He slept the whole time we were gone.)

This should have been a fast trip, but it ended up being an hour. During this time, Valerie and I shared some wine and talked, or at least I let her talk. She'd had quite a day at the hands of my child, so she was free to say whatever she needed. I was there to listen, like I always want Matt to do when I've had a rough day.

What I heard from her I didn't expect, although maybe I should have. First, a little background information before I get into what we discussed. When she was pregnant, she planned on returning to work part time while her husband worked from home or her mother watched her kids. Instead her daughter was born with down syndrome, so she did not return to work. She has therapists who come to the house 4 days a week, every week of every month. Her daughter also had open heart surgery, so there were/are multiple doctor visits. Her husband figured out he could not work at home and care for children, and Valerie surmised that no one could care for her special needs baby as much as she could, which is true for every child to different degrees. It was a sacrifice, but she'd never call it that as she doesn't call it anything but doing what you have to do.

Like I said, she didn't go into any of this because she never does. What she did say was that Jack was too young to be left while I worked in an office. Not only that, but I shouldn't be working so much when I'm home with him. He needs someone who will care for him all the time. If I Have to work, then cut it back to part time, but only if I Have to work to help pay the bills.

Valerie is a SAHM, and I don't know too many of those. Actually, she is the only one I know besides my MIL. And I have heard of the SAHM versus WOHM war, but I have never been a participant. Working in the home, I've never really felt entirely part of either group. Besides, what I want is the best of both groups. So, Val is a SAHM but she wanted to return to work part-time but chose not to. I never put her into that militant SAHM group who look down on those who work in an office. I saw her as part of the SAHM group who said 'this is what I do because it works for me, your mileage may vary.'

Maybe she's been home too long, I don't know. I just didn't expect her to find fault with me going into the office 2-4 days a month. And working from home, she knows that I sometimes have Matt's aunt here to help, or Matt here, or my mother. Generally I can get my 40 hour job in over the 7 day week in bits and starts whenever Jack lets me even if that's at night or I have someone to help. And it takes shorter than 40 hours. I've only brought my son or daughter to her or her family to watch because they would ask me to, and I've always paid them well.

She didn't have a problem with me working with Janie, or if she did, she didn't say anything. I don't know if the problem stems from the fact that she wasn't a mother then and she is now, or that Jack is colicky. Maybe she's been listening to Dr. Laura too much.

I'm glad for her frankness, but it did drive a mental wedge. No one likes to be told they are doing the wrong thing. No one wants to be judged. And by their best friend. I'm not her and she's not me. It's obvious to me that she doesn't understand how I feel about my work, and she thinks that I'm a lesser parent. Only our friendship kept me from just getting up and walking out.

In my mind, I start justifying myself. The truth is, I'm only working full time for July and August. This year I will be switching to part time when the school year starts. This has been my plan, and I think it's a pretty good one. I don't say this outloud because she already knows it, and finds fault with it. I'm one who avoids the argument, so I just listen and sip my wine rather than say, "where does this come from all of a sudden, or have you been thinking this all along?"

The second day in the office, I worried. I worried because there were other things Valerie told me. Jack screamed so much that her two year old told him to 'shut up.' He wouldn't come up with that on his own, he heard it from her. She told my baby to shut up. And yet I went to work. And felt horrible for it. Horrible not for working, but for leaving my baby with her when she clearly wasn't up for it no matter how much help she had. I worried for my little one. I knew he wouldn't be hurt nor neglected, but that he wasn't being loved. I was near tears all day and called about 4 times, each time with a good report. Yet, I couldn't relax. How could I possibly?

During that day I met with my boss. I told her that my child care arrangements in Arizona had fallen through so my trips there would be more infrequent. I also reiterated my request to work part time in the fall. She then recommended that I get a nanny. She told me that her friend was hiring one in Arizona for $17/hour. I wanted to but didn't respond that her friend makes twice what I do and is married to a doctor. Plus, at Bay Area rates, too much of my salary would be going to the nanny and since I'd be working only part time anyway, why not just quit altogether?

When I got back to Valerie's that night, she told me that he had been a normal baby all day. That day she finally listened to me about Jack. She tried out the sling and learned he loved it, and when he started crying more than she could handle, she put him in the swing and he immediately fell asleep.

Then she asked me if I talked to my boss about quitting or starting part time now. What I didn't tell her was that I didn't agree with her conclusion for my life. Instead I responded that my boss recommended a nanny. Valerie also found the nanny idea unworkable but hers was the SAHM response of "then why bother having kids." I felt like I was talking to a stranger and I couldn't wait to get home.

I feel like trust has been shaken. I never worried about my kids with her, and now I do. And I never felt judged by her, but now I do. Although we're friends and have gone through some incredible things together, it appears we are moving in different directions. And, I won't be bringing Jack with me to Arizona again without bringing my own sitter with me.

Feeling a little snarky

2005-06-27T19:14:00.000-07:00

Paula Abdul was on the news tonight nearly in tears about the pain in her thumb from an infection she got from a nail infection. Yes, this was news. Big news. Jack felt so sorry for her, or as he put it, "Hey Paula, Kiss my stoma!"

Watch out, I'm feeling snarky tonight. The fix is in and I don't think any more family can accidentally find me. I've been holding it in for too long. Must. Comment. On. Family...

So one of my younger sisters graduates with her PhD. My brother and father gave her advice on how to negotiate a good salary from her first real job. A week or so later she emails the family and says that she disregarded the advice because she was given an excellent offer. My older sister, you know, the one who is dating the doctor 30 years older than her not because he's good looking or fun to be with (because he's definately not) butbecause he's a doctor (made only more evident by the fact that she calls him 'the doctor' instead of by name), sends her and everyone in the family a note about how our young sis shouldn't be so focused on money like everyone else in the family (excluding herself). Ummm, wait, who is dating someone only for his money?

And then there's youngest sister. I don't know if I told you about her. She was married... for 3 months before she cheated and they broke up. This was after the biggest wedding of the century, for which they still owe my brother some money. She goes out and buys a car with her new boyfriend (the one who she cheated with), and she puts everything in his name. The downpayment is all hers, and she makes all the payments. Then they break up and he takes the car. She can't get it back because it's in his name. And she's surprised. Ummm, wait, who said this guy had any morals? Wasn't he the one who while you were only 3 months married went with you to MY house and your mother's house and pretended he was gay when really he was just sleeping with a newly married woman? And what were you doing buying a new car with some loser guy you hardly know, with money you should be using to pay back your brother for the super wedding? By the way, I'm still waiting for that thank you note. You know, for the wedding present. You know, the gift certificate you called and asked for because you said that you and S wanted to buy a new bedroom set. Then a week after the wedding you called because you got the certificate but thought you must have misplaced the present it must have been attached to? Please little sister, stop telling me how you and your soon to be ex-husband are going through counseling. Especially when I know that he's already living with another girl and you went out and bought a car with the guy you cheated on him with. I'm not buying it and I really don't want to hear about it.

Okay, it's off my chest. Now I've got to go pack. Lordy lordy, I really ought to give up the wine on an empty stomach.

In Anticipation of Flight

2005-06-26T16:42:00.000-07:00

Sssshhh, he's sleeping. A free moment. Let me post quickly before it's gone.

Jack is doing well. He's not crying so much, and smiling more. His smiles always look to me conspiratorial, if that's a word, as if it's our private joke. Kind of laughing at our situation, or maybe he's laughing at his ability to get me to lift my top by just insinuating a cry.

In just two days, the two of us will be flying to Arizona. My friend will have her mother over, and between the two of them will watch her kids and Jack. Janie will stay home with Matt and she's not too happy about. I tried telling her that it will be over 115 degrees out there, but what does that mean to a 4 year old? I just can't figure having a baby and a child to wrestle on the plane, nor can I in good conscience leave my friend with both my children to watch for me. That's no way to treat a friend.

I don't know yet how this trip is going to go. I have no idea what to bring with me on my flight. I think I'd like to carry him in the sling, but then I'll probably need the stroller just to sherpa my laptop and diaper bag. I'm also bringing the travel swing, breast pump, and of course car seat. For my two day trip I'll be toting some huge bags. Oh Skycap, got a minute?

The thing about going to Arizona is that this will be my first day back in the office in six months. Everyone will want to visit, as well as try to find the right words to say about the whole Hirschsprung thing. I'm going to have to just put on my -oh-everything-is-great face to avoid getting any so-sorries. At this point in time, someone saying they're sorry seems strange. At first it felt considerate, then sad, but now he's so cute that the word sorry just doesn't describe it. I tell him I'm sorry every time I have to give him medicine or change his bag because he hates it and I wish he didn't have to go through it, but that is saying sorry to him. Right now, I don't feel like anyone should feel sorry for me. I'm fine. I really am.

Truth is, things are good. Most of the time. Almost all of the time. He is like any other regular baby. He sleeps, he eats, he cries. Except, I have to keep my eye on the clock to give him his heart meds (7am, 11am, 3pm, 11pm, then repeat). And I tend to time his baths around bag changes. And when I'm at Janie's gymnastics and other mothers want to see him, I hope they don't try to touch him too much so accidentally feel the bag or notice the small bulge on his left side. I just don't want to explain it. And I guess I'm afraid of the recoil. It's not pretty. Afterall, it is poop.

Janie is right now deconstructing her room. Matt and Jack are asleep in the living room (Matt worked today), and I'm slowly trying to go from room to room cleaning. With Janie running around, cleaning feels sort of like shoveling snow in a blizzard. But I must try. Mike's aunt is coming over tomorrow to watch Jack while I work. It's exactly what I need. I get to be close to Jack, and get my work done. Plus she's free. It may only be now and then, but I'll take it.

Not Mute Enough

2005-06-21T15:57:00.000-07:00

Working from home full time while going to summer school while caring for a newborn... I wonder why I feel close to the cliff sometimes.

Let me start by saying that I'm okay. Put down the phone. I'm not about to do anything dangerous. It's more along the lines of dreaming of driving fast out of town - except I'm not driving that minivan parked out front, but some little two seater. And I'm alone. Blessedly alone.

Is it terrible to have this fantasy? I look at my beautiful children. Janie who right now is picking up her toys while making obvious complaints because she always has to pick up all the toys. And Jack who is sitting in his bouncy seat, deciding whether to smile or cry, bright green frog on his shirt, and hiccuping. He keeps looking up at me to make sure I don't try to sneak away. Don't worry kiddo, mama isn't really going anywhere.

I think I'm just frustrated because as usual I'm trying to do everything and as usual I am not doing such a good job of it. Today I had a big meeting. I got Jack to sleep and was invovled as much as possible as someone can be over the phone instead of in person. I have to be very quiet to hear every word as the speaker phone on that end always sounds like its shoved to the farthest end of the conference room. Most of the meeting doesn't involve me, but it can so I have to pay attention. Then I hear music. The Eagles are playing over the baby walkie-talkie. Oh crap! I left the alarm clock set to tell me when to give him his meds. Now he's awake and crying because his nap was shortened.

I put my headset on mute then run in to get Jack. Maybe a little breastfeeding and he'll nod off again, but first with the meds. Put Jack in the swing then draw up the digoxin. Giving him it only makes him more upset. So we sit in the rocking chair and I start breastfeeding him. I can listen in very well to the meeting like this. But then... Then... Oh, it's too horrible to mention but that is the purpose of this post isn't it? They ask me to check something on my computer. I turn off mute to tell them okay. Mute back on. Hold baby to breast and try to walk to my computer. Nope, he slips off the nipple. Milk squirting everywhere. Baby crying. People in the meeting asking me questions. Pazel? Are you there Pazel? Pazel!

Mute off. I'm here. I'm working on it. As the baby screams right into my headset. They all bust out laughing. "You're very busy. We'll let you go." Nooo, wait, I can get it, hold on.... click. Damn.

The road to hell is paved with the best intentions. And right now I feel I'm driving down it at a quick pace.

I did this before. I worked from home with Janie. Sure, she was a good baby, a quiet baby, a healthy baby. Jack... well... he's Jack. He's not Janie. He's got his own ways and currently that is using his loud voice to get his way. I suspect he's got a plan and this was only one little step in it.

Can you hear the crying? Seems the sound of me writing a post hurts his tiny ears. Must run.

Pictures!

2005-06-15T19:37:00.000-07:00

If this works right, you should be able to see pictures of Janie & Jack. http://www.flickr.com/photos/75607190@N00/
There's even a picture of the three embryos we transferred - one of whom is Jack.

Monday I started work. So far I haven't been able to really put in more than 4 hours of work each day. Today was worse because Jack had an appointment with his cardiologist. Counting time to drive there, sit in the waiting room, sit in the exam room, exam, time to get halter monitor put on, set up new appointment, get refill on prescription and eventually drive home...half the day was gone.

The appointment went well except those few innocent words which throw me off. One was when the nurse was putting on the EKG monitors. I commented how calm Jack was compared to last time. She answered that usually they're pretty good at this age, but wait until I bring him in at 2 years old. Ummmm, I don't think, I mean I hope we don't, uhhh, I guess... Then the cardiologist said something at the very end of the appointment about how he hoped Jack could get weaned off the meds around a year, but that is if he gets to come off the meds which we are hoping he can do. Ummm, yea, okay, I uhhh...

I guess that I always figure that this stuff is temporary. That after the first year, after the final surgery, that he will no longer have a colostomy or heart meds or anything, and that despite maybe being monitored more than other kids, that he will be normal. Fine. Healthy.

So hearing stuff about coming back later or the possibility of him staying on the meds longer than a year I start to get panicky.

I would like to continue, but the crying hasn't stopped. I've got to get to my little man. Hope you like the pictures.

Beauty and the Beast

2005-06-10T10:36:00.000-07:00

So around 5am, after changing the baby and passing him to me to feed, Matt went off to get dressed. I was sitting up in bed, eyes closed, trying to sleep as I nursed. I get no sleep so I'll try to catch a nap when I can. Matt comes back in and says, "Uhhh, did you... uhhh do you... oh nevermind." I know he was wanting to ask about the pants but probably seeing me nursing the baby while trying to sleep sitting up, he weighed the value of asking the question and decided against it. Besides, I think he knows the answer but Matt is the type of guy who in the morning realizes that his sleepy evening self did me wrong. This makes him more willing to accept his punishment in return for the unsaid argument just being over. So as we were both satisfied, it was.

I have a history of doing odd things like this for revenge now and then. But too much revenge would be a very bad thing. It must be sporadic and odd and at a matching level. Janie doesn't know about these little things (couldn't know), but I don't know if that way of thinking is learned or just genetic. The other night Janie got mad at Matt. He told her to put away her toys or he would put them away in the garage. She then told him that if he did, when he was at work she would get some of his underwear and throw them away. He looked at me as this was my fault, and I tried to hide my smirking as I told her that we don't throw each other's underwear away, put your toys away. Is it my fault? I think as she matures she will learn not to warn what she will do, just do it. At least that's what I do.

On another subject, yesterday Janie had a big dentist appointment. I had to hold her while the anesthesiologist put her under. I can only describe it as feeling as if I was helping them suffocate my kid. She fought as I held her, then gave up and whined a little until she was out. It was probably a quick 10 count, but it felt much longer. After she was out, they laid her on the table and as I walked out I looked back and saw them taping her eyes shut. I could have gone my whole life without seeing that. I hope that section of my memory is erased and written over by something more positive. I still have that picture in my mind and it really bothers me.

I don't think I could have held her without crying except for all I'd recently been through with Jack. I've been desensitized. She was out maybe 20-30 minutes for her crown and fillings, which compared to his 3 surgeries was a flash. When she woke up she was really upset. Matt carried her out to the van, and after we got home he laid her on the couch. I put on Beauty and the Beast and got her some juice. For the next hour she cried and complained while Jack also cried (because he cries a lot), and since Matt went back to work, it was all on me, a woman with very little sleep and on a diet. Somewhere there was someone having my opposite life; laying on a beach with only the sound of the waves, slightly drunk, and looking forward to an evening out of fine dining, dancing and great sex. I hope she got sunburnt.

So watching Beauty and the Beast, I came to the conclusion that it is not a good story for children. The heroine Belle starts off great with her love of books and spurning the opportunity to marry the town stud to spew out his 12 strapping boys. She wants something more. Good. On the way to a fair, her father gets lost and ends up at the Beast's castle. Beast discovers him there and locks him up. Belle rushs to her father's side and takes his place. (Sure he's sickly, but what father would let his daughter take his place in the dungeon of a Beast's castle?) Anyway, Beast is a beast in not just looks. He's mean and gruff to everyone and everything (which in this case means the same thing but you'll have to see the movie to know what I mean. Basically his servants have become objects literally and figuratively). While living with him, she believes that she can find the nice guy within him. While he looks like beast and acts horribly mean, deep inside he's really kind. Only she can see it. Eventually, he does turn back into a prince because she falls in love with him.

Many things wrong with this. It's like grooming young girls to think that men who are mean are really nice inside. If only they were loved they would turn from a beast into a prince. Be forgiving when they are mean because really they are so sweet deep inside. Try harder and you'll reach that prince inside. Right? Wrong! If a guy is a beast to you, he is really a beast and always will be one.

Of course he was turned into a beast by a witch - I think must be how he refers to his ex-girlfriend because we all know it's a woman's fault. And after he turns into a prince I'm sure that we're supposed to believe that he will never be mean again. And living with him in this isolated castle is what we're supposed to accept was the better life that Belle was wishing for back at the beginning of the story. Forgive me if it all makes me a bit ill.

A lot of fairy tales are like this. They present horrible models to young girls. And my daughter LOVES them. She wants to be a princess, mainly for the dresses and dancing and castle-living, and I try my best to tell her she can have all of that and a career too.

Now I'm not telling you this story of Beauty and the Beast to wrap up my discussion of myself and my husband. He's not a beast, really. He's actually a very good guy, he's just terrible at household chores. And I've tried training him and have made some progress, but there's still miles to go. It's really the only thing we've fought about continuously for all these years. We've tried chore lists and nagging and messiness, but in the end the best thing has been our cleaning ladies. The division of labor on cleaning is still hugely uneven, but having their help has improved many things. That and an occasional dirty deed as teaching tool.

Jack is sleeping (he sleeps well during the day) but I've got to wake him up so that we can go for a walk. Today is the last day of my maternity leave and I don't want to spend it indoors. Besides, maybe if he doesn't sleep so well during the day he can sleep better at night. Is that mean?

(p.s. Would it be wrong if I started referring to my kids Colon and Semi-Colon? Just wondering.)

Nice Pants

2005-06-08T14:58:00.000-07:00

So throttling my husband, would that be bad?

I love that guy, but he drives me crazy really fast. Last night he wanted to wash his pants so instead of taking the clothes out of the dryer to fit the load from the washer, he just shoved the load from the washer right in to the dryer with the old load. Gee thanks baby.

I discovered this at the end of the cycle, in time for me to empty them out and make the couple trips to get all the clothes to the living room on my own. Seeing the dryer empty (but not sensing the obvious) he put his pants in the dryer and went off to shower and go to bed (at 9pm) while I folded the double load on my own (while caring for one wide awake baby) so that they could get folded before wrinkling.

So I did what any other rational woman would do. I stopped the dryer. Let him discover the pants he so desperately needs still wet in the morning. And on such a rainy day, I hope they stay somewhat moist all day to remind him not to f*** with me.

I've asked and what I did is not passive aggressive behavior, just plain aggressive. But my conscience is clean.

Deja Vu

2005-06-05T10:26:00.000-07:00

I'm sorry I've been away. I've had you all on my mind, but I haven't figured out yet how to effectively blog and take care of baby. Just this week we had an appointment with the surgeon (post-op, looking good), pediatrician (three shots!), and a home visit from a dietician on behalf of a grant for 'medically vulnerable' children, specifically from the NICU. Add in the class I had yesterday, Janie's graduation from preschool into kindergarten, and Matt working overtime and Pazel has not had a minute of rest.

Jack is doing well. At nearly 9 weeks, he's almost 13 lbs. I think in weight and height he's in the 75th percentile, but in head he's in 50th. This is amazing to me. His head is normal size! I come from a family of pumpkin heads. Janie has a huge noggin. Her stats as a baby were always above the charts in everything including head. I say that Jack's normal head is absolute proof that he takes after Matt more than Janie did. His normal head, his widow's peak hairline, and his personality.

Jack cries a lot. Sometimes it is for good reason. He hates the taste of his medicine, especially when he's asleep and is woken up by the taste of it. He makes these tiny whiny tired begging cries that just kill me. That's about the time that I start cussing about how much I hate doing it and it's not fair to him and how sorry I am. Jack also cries when he's naked. There's a lot of babies who hate being uncovered, but I think they pretty much have gotten over it by this age. I swear he remembers being held down for all those blood samples and IVs in the hospital. He screams at the doctor's office every time, as soon as I get him naked on that paper sheet. I try to bundle him up with the blanket but it's no use. He knows and it's a loud, angry, indignant cry.

Janie tries to help with Jack. Sometimes that involved putting in the pacifier or getting his blanket. Othertimes she shakes his swing or puts her hands on his face and talks to him, "oh baby baby baby jackie. there you go, there you go, oh baby baby." I have to admit that sometimes it bugs me. I'm holding Jack and she comes up and starts messing with him and I'm short on sleep and just got him to stop crying and start falling asleep and I just want to growl and snap. I'm embarrassed by it. She's just trying to play with him. Sometimes it takes every bit of energy just to tell her 'not now' instead of yelling it. She's been going through a big adjustment with having a new brother, she's just trying to find her place. And here I am, always dictating the terms, usually for my own convenience.

Yesterday as I drove to my summer class I passed over the bridge, I couldn't help but think of when I drove over the bridge the day of the IVF transfer. On the bridge I had gotten the call that the embryos were almost all poor quality so we were going to do the transfer that day afterall. Matt wasn't with me because we had thought we'd make it to the 5th day. And we had also assumed that out of our 21 eggs we'd end up with plenty of quality embryos to use and to freeze. It was a new sock in the face.

As I drove over the bridge yesterday, it was all there again. I didn't cry or anything because I know now that the story ends well, but I kind of shivered remembering. Post traumatic stress? Is there a lighter version?

I've had the feeling before. There's a tall woman who works in surgery and whose job it is to locate the baby who's about to go into surgery and inform the baby's nurse to get him/her ready to go. She would come in wearing her surgery scrubs, one gown flowing like almost a cape, an Oakland A's surgery cap, and always a dead serious expression. On three different occasions she came in and scouted out Jack for his 3 different surgeries. When I was at the hospital this week to see the surgeon, I passed her in the hall. She was walking straight towards me and I swear I held Jack tighter to me. It's like seeing the grim reaper walking the halls. She probably has no idea what the sight of her does to me. Those serious dark eyes, searching for the next baby to go. A shiver.

Someone is crying. I've got to run. Thank you all for the work advice. I think I'll take your advice and ask about starting part time earlier.

Also, I forgot something possibly important. Matt finally returned a call to one of his old Army buddies. He had been calling to ask about the birth and Matt had been procrastinating talking to him because he didn't want to go through the whole long story. Anyway, he did return the call and did go through the long story. His Army buddy brought something up that didn't even occur to us. He said that guys who had served during the first Persian Gulf war came home and had a higher incidence babies with unusual or rare birth defects. Could this be the case with Jack?

I had thought that Hirschsprung's was genetic, but I guess it hasn't been proven. My brother (MD) said this as well as the dietician during the home visit. I would rather it be genetic so that there would be no chance that I could have caused this during the pregnancy. I hadn't even thought about the Gulf War Syndrome stuff. I guess cause doesn't matter since what's done is done, but on the other hand it is much easier to cope knowing it is something genetic that couldn't be helped rather than something that someone or something caused. Know what I mean?

(Jack has EATs which are ectopic arterial t.... I can't think of it while he's crying. They're a type of SVT. SVT's is the general category and EAT is different because of the location of the heart where it is originating. Jack is on two meds, digoxin to regulate his heart and interol which is a beta blocker and slows his heart rate. The danger is highest from the high rate than from the irregularity but neither are good and he gets them both together. I hope this helps your friend.)

More Work Panic

2005-05-27T11:43:00.000-07:00

I've been trying to avoid a panic lately. I'm supposed to resume working on June 13th.

I've worked full time from home as an analyst since I had my daughter. It wasn't planned, but just worked out that way. Matt had gotten this job here in the bay area, and when I gave my boss my notice she offerred me the opportunity to telecommute. Perfect. Working full time at my job while also taking care of my daughter full time was killer. I didn't sleep much because when my daughter would sleep I would work. There were many late night analyses so that I could spend more time with her during the day. This job is very intensive, needing more time than I could ever give it and all my brain power.

After she turned two she started at preschool. (Okay, at that age it was day care but at a Montessori school. I call it preschool because day care has bad connotations and makes me feel incredibly guilty for being home but not having her with me all the time.) She started part time then we slowly increased it over time. Eventually I went back to grad school part time while still working from home full time. I want my MBA to take on a management level position after I graduate. The plan was to get my child to at least 2 before I graduated and returned to working outside the home, but infertility has a way of ruining the best of plans. Now I will graduate next May when Jack is 1.

Because I knew I couldn't handle full time work, part time grad school, a new baby and a 4 year old, I arranged with my boss that I would go to part time in late August until I graduate. She said that she would rather I not drag school on longer than necessary so I could graduate on time and get back into the office as soon as possible. It all sounded great. As for working full time this summer, it didn't sound like a problem because I had done it before with Janie.

So here I am now with Jack. He is not the same as Janie. Where she was quiet and easy and healthy, he is colicky and difficult and has health issues. My boss tried to call me the other day, but couldn't get a word in through Jack's screaming. I think she was calling to check that I'm still coming back, and the call probably didn't reassure her.

I'm panicking. How in the hell am I going to do this? I've already got a trip in June to plan, and one in July. Uhhhhh. I don't know. When I had Janie, I would bring her with me and my best friend would watch her. At that time my best friend had no kids, but now she's got a 2 year old and a 1 year old, and her one year old has Down's and a heart problem. In other words, she's a bit busy so I'm not even going to ask her.

And I don't know how to leave Jack not only because he's a fussy newborn, although that is reason enough, but because of his colostomy bag and heart issues. What if he has a leak? What if he has SVT's?

Right now, I can barely get myself dressed or showered, much less have time to do work. Getting an entry into this blog has been more difficult to time than I can describe.

So maybe I need to go back part time instead of full time. Or maybe not at all, but that would be very hard in many ways. I define myself through not just parenthood but my work. And I've held a job continuously since I was 13. It's my security and my chance to shine, so much so that I don't want to do it wrong either.

I can't put mothering Jack against work because we all know that's not a fair comparison. I guess I'm venting. I don't want to be a SAHM but I don't want to be a WOHM either, I want to still be both but am catching on to reality.

Do men ever have these worries?

Another adventure of the bad mother

2005-05-25T10:28:00.000-07:00

What a day.

Yesterday I learned to always have a kit with me to change his bag. I brought him to his cardiologist appointment at the hospital, but of course he had a leak on the way there. This is when the seal from the pouch to the skin leaks, so watery stool gets all over his clothes - and mine because I discovered it after breastfeeding him. I did not have any supplies, just a very regular normal diaper bag. I didn't know what to do.

So I tried to find the ostomy clinic - but there isn't one or at least it's only on certain days. There's no staffed area where I can pick up supplies. So I went back up to the NICU, as much as I didn't want to go back there, I knew they had supplies. Of all the people manning the receptionist desk, it happened that it wasn't anyone that I knew. Lunch break. Damn.

"Hi. Ummmm. My son was just discharged two weeks ago. We're here for a cardiology appointment downstairs."

Dumbstruck look. So I continue on...

"Anyway, he has a leak in his colostomy bag and I uhhh don't have any supplies and I was hoping maybe I could get a bag from here to tide us over through the appointment until we get home."

She said it was no problem and went off to get supplies. She came back with everything except stoma paste which is a crucial ingredient. She can't get me any of that because it comes from the pharmacy.

Damn.

"Thank you!"

Should I leave him as is or change it without the paste which would mean his skin would not be protected and I would have to take it all off and do it again when I got home? I imagined the cardiologist putting the stethescope on his chest while the poop was leaking out and the smell filled the room and decided that I couldn't let it be. I didn't want the cardiologist to be disgusted or to know I'm a bad mother. It's bad enough the NICU now knows. Yep, all this due to my own vanity.

So then I went to the nearest public restroom with a changing station, which happened to be right outside the Cafeteria, or in other words had lots of traffic. Yep, my worst nightmare - changing his pouch in a public area. That the whole stroller/carseat combo took up tons of space in the tiny sink area and that Jack was screaming through the whole thing only added to my stress.

As I was doing it, I tried to focus and not look up at the steady stream of women. Cut out the circle in the pouch for the opening (cut to fit - harder without my template), remove old pouch, clean up mess, dry off, put on no-sting protector, curse myself for not having stoma paste, then apply new pouch. A change of clothes, new diaper, throw everything away, wash my hands and we're ready to go. Finally.

We then went off to the cardiologist appointment. The reason we weren't late was because I had driven straight from my weight watcher's meeting to the hospital assuming the extra time would be for getting a little lunch. So I didn't get any lunch, but at least he wouldn't be stinky. And not so much to track for my lunch points.

In the cardiologist's office I couldn't help but look around at the other kids there. You know that they're in there because they have some sort of heart problem. They all look fine, but you just know. They all look like regular kids. I held Jack and hoped that we wouldn't be coming back here after he's a year old. That is only a temporary thing that he will grow out of. That he will be a normal kid. Just a regular, active, pooping-out-his-butt normal kid.

In the back they first gave Jack an EKG which involved me stripping him down then putting the leads on his chest. He hates being naked, he's extremely tired, plus he just endured a bag change so he was very upset. The nurse told me that I could give him a pacifier to help calm him. When I don't go reaching for the diaper bag, she repeats herself. I don't have one. She looks at me to see if I'm kidding. I looked already, I don't have one with me. (I had looked during the whole bag change incident.) Big sigh and then she opens a drawer and takes one out for him. Thank you, says the bad mother yet again.

The EKG came out fine and we met with the cardiologist. I like him. He looks like a cardiologist to me. He is very healthy looking, trim, wearing running shoes, and a very calm demeanor. You could tell he takes good care of his own heart. I told him how hard it is to do the meds every 6 hours. I can't imagine doing it for another 9 months. We would, but it's hard. You always have to have one eye on the clock. Jack also hates the taste of the medicine so if he's asleep when you give it to him he will wake up. So we're going to try moving the beta blocker to every 8 hours, but to do this Jack will wear the halter monitor to see if he's having any mini incidents that we're not catching with our stethescope checks. Going to 8 hours will increase the chance of him having incidents so it will also mean that we (I) will have to check his heart more often. There's always a trade-off. And I never know if I'm making the right choices.

So we had the halter monitor put on which involves attaching more leads to his chest, and the wires are attached to a computer the size of a deck of cards. This computer will record his heart's activity for 24 hours, then I will take it off and mail it back to the hospital.

So I had two goals yesterday, a weight watchers meeting and cardiology appointment. We left the house at 9:30 and with the driving, the bag incident, and a trip to the hospital pharmacy for a refill, we didn't get back until 4pm. And we were both exhausted. Having a newborn means everything is ten times harder. It's harder to go out. Before we go I will feed him, change him, pack his diaper bag (better next time), then get him in his seat. Yesterday I even drew and packed his meds since we would be out during that time. While out, I'm traveling with not just the baby but also the stroller, diaper bag, and car seat. I've got to be mindful of when he ate last, when he was changed last, when it's time for his medicine. I've got to find private areas (if possible) to feed him and spend too much of my time carrying him with one arm while pushing the stroller full of stuff with the other. The whole thing makes it so hard to just go out. It's easier to stay in.

And that is my plan for today. Maybe we'll go for a walk. Maybe. I'd like to, but there would be so much to do to get ready that I'm not sure I will. Terrible, huh?

My important lessons from yesterday were to:
1 - always have a bag change kit in the diaper bag
2 - always have a pacifier or two in the diaper bag
and
3 - always have a spare shirt for me in the car or diaper bag. Although Jack was cleaned and freshened up for the cardiologist appointment, I still had spots of stool on my shirt.

Someday, when all this is history, I will look back on days like this and laugh. At least I hope so.

More home thoughts

2005-05-23T19:24:00.000-07:00

The maids were back today. There was much talk in Spanish until one was appointed spokesperson. She asked me about the baby. "How old?" Seven weeks. "Not here..." while moving her hand around. He was in the hospital. "He okay?" Yes, thank you.

I was thinking tonight about the NICU. I know that tonight life is going on. There's new babies arriving and some going home. I know that the baby that was to Jack's right is still there. A tiny preemie. I can see his mother's visit in my mind. Driving into the parking garage. Walking into the hospital. Elevator or stairs to the 3rd floor. Walk down the long hallway. Greet the receptionist. Lock purse into a locker. Scrub up to the elbows. Put on a gown over the clothes. Walk to the baby's spot. Peer in to see how he's doing. Hold him if the timing is good, but let him sleep if it's not. Get an update from the nurse. Read the nurse's notes for the other shifts. Settle self in for a good long time.

It sucks. I hated it. I loved seeing him, but not like that. I never knew what I would find when I got there. At worst was those updates that would change his discharge date. Then there were the less bad updates which included multiple tries to get blood or start an IV, shaving part of his head to get to a vein, or just seeing a nurse that I didn't especially like but would be hanging out with all day. Then there was finding out he had been upset but I wasn't there. I just wanted to get him out of there.

Now he's home. He cries for a few hours a night. It's not so much fun. He's not tired or hungry, just cries. The pediatrician said that it may be from intestinal contractions that hurt him. Or it could just be colic. We've tried different things for gas but they're not helping.

Other times of the day are fine. He'll look at me. Sometimes I swear he's flirting with me. Those eyes, that smile, he knows that he owns me. And when he sleeps, he loves to snuggle up to me, like he's trying to dig a burrow into me. Matt just put Jack into his swing. At this age Jack shouldn't be able to see me at this distance, but I swear he's staring right at me, sucking harder on his pacifier. He's keeping an eye on me, making sure I don't try anything, like say a shower or a nap.

It's so different being here instead of being at the hospital. I love holding him and rocking him without a "Let me just take his blood pressure while he's sleeping." or "I'll just slip this thermometer in." or "How long did you breastfeed him? Did you weigh him before starting?"

Saturday I started my summer school class. Class was from 9 to 4, so Matt was left alone with both kids almost all day. Although I had asked him about this back when I was pregnant and when Jack was in the hospital and Matt said it would be no problem, the morning of he practically begged me not to go. He didn't care about not getting some of the tuition back. After reminding him that I needed to get these units so I could stay on track to graduating next May, I was off. It was really hard to be away. I brought my manual pump in my backpack and was given an empty classroom for privacy. When I called Matt at noon, he was in good spirits. When I called back at the end of the day, I could hear Jack screaming in his arms and hear the tension in Matt's voice. They were both done for the day.

So I'm going to take a shower. Jack peed on my leg during a pouch change. I had draped a diaper over his little thingy, but the diaper kind of pointed him out the side toward my leg and our comforter. Ahhh, the joy of boys. I could almost imagine his little eye winking at me right after.

-------

I've been reading all your comments and there's so much I want to say. Time has been short, that's for sure. I'm working on it.

Now the little mister (master?) in the swing has had enough. Back to the human swing. The shower will have to wait. What's a little pee among family?

Our first week

2005-05-18T09:24:00.000-07:00

What a week. It seems like everyday there's been something. A home health nurse visit. A doctor's appointment. My sister's graduation picnic. The graduation brunch (which I hosted). Today is probably our first day without a commitment.

It's been so much better having him home. No more long drives or pumping or being away from Janie. And for Jack, no more needles or bright lights or changing nurses. I think he's starting to get to know us as more than mere visitors. How could he have known we were anything more than that before? We were just one of many, not that much different from the other nurses or visitors. He thought that the NICU was his home, the nurses were his family, and that life was lived in that pink metal crib, sleeping, getting vitals taken, and being poked with sharp objects.

Of course it's not all rainbows and lollypops. He eats about every 1 1/2 hours. He eats small meals more frequently which is probably better for his digestion, but wears me out. He's also a lot fussier than Janie was as a baby. She really rarely cried and was very easy to please. He gets upset during diaper changes or pouch changes I think because he hates being held down (that fear of being poked by needles again). He also cries when he's falling asleep, fighting it the whole time. And sometimes he just cries for no reason. I'm working on different ways to soothe him. He likes to be swaddled tight. And he likes it when I vacuum while wearing him in the sling. He also likes to go for stroller rides over bumpy roads. He tolerates the swing and thinks being held should always involve being fed.

I feel very protective of him. Yes, that's normal as a mother, but there's more. I'm very sensitive about his colostomy. It's kind of like when that customer service rep told me it was sad and I took it so hard. I want him to be treated like any other baby. It's hard because right now the family is just getting to know him. They want to see his stoma and I can see their fear or disgust. It's not disgust with him, but you can see his watery poop right through the bag. It's different than seeing it in a diaper.

Sometimes I think that I just can't wait for this baby part to be over. I love him as a baby and love babies, but when he gets older we won't have to deal with the pouches anymore or the heart meds or the many doctor appointments. It will be more to what we know. Easier. But, this is our last child and I don't want this part to end so soon. He has tiny feet and wears tiny clothes. I love his fuzzy head and the way his chin quivers when he cries. I can't give all that up.

I hear Mr. Demanding so I'd better go. More boobie time.

HOME!

2005-05-11T13:11:00.000-07:00

I have to learn to type one-handed. My baby is HOME!

Monday afternoon we got to collect him. It was a whirlwind getting him out of there. Our favorite nurse Sylvia arranged everything ahead of time (physicians to sign-off, set up follow-up appointments, gathering supplies) so that it all happened quicker than we expected. Driving home was surreal.

At home it was hard for Jack to rest. The animals wanted to sniff him. Janie kept coming over and patting his head, prying open his hand, or hugging him. She kept telling him to wake up and I had to keep telling her that babies need to sleep. She just wanted to play with him. The phone also rang off the hook with family and friends calling to see how he was doing. Of course he also had a leak from the pouch (colostomy appliance) so we had to change it. We learned that we didn't have things set up in the most efficient places. We also changed from the NICU two-piece system to the one-piece ones we received in the mail and there's nothing like learning something new when the baby is crying, there's ummm watery baby poop all over him, and Matt and I both trying to take control. Janie kind of backed off and watched the drama. I've changed things around so hopefully it will get better now.

Yesterday the home health nurse came to visit. She'll be coming a few times a week for the first two months, then we'll see after that. I also got a call from our neonatologist and the insurance company nurse checking on Jack and I. Oh, and family and friends kept calling. It was continuous. I joked that I was going to start answering the phone "Hi, I haven't killed him yet." but they'll probably send social services over here. I just didn't figure there would be so much interest on our first day. Today the phone has been quiet at least so Jack and I have been able to spend more time just rocking and relaxing.

I'm tired but not discouraged. Very very happy. I'd say that the heart stuff takes a lot more time than the colostomy stuff. For the heart I must listen on the stethescope a few times a day, put on his monitor at night, and give him one med every 12 hours and the other every 6. This means that for last night he fell asleep at 10:30, then I woke him back up at 12 for his meds. Then he woke up at 2:30 and 5 to eat, and I woke him up at 6 for meds, then at 7 I had to start getting Janie up and going. Sleep? What's sleep?

We have an appointment with his pediatrician tomorrow and the home health nurse on Friday. There are also upcoming appointments with his cardiologist, surgeon, and ostomy nurse. If I was only taking the standard 6 week maternity leave, this would be my only week with Jack at home. Incredible. What if we had counted on my income and I worked outside the home? Thankfully I am off until mid-June and I work at home - and I'll be working only part-time once school starts back in the fall. If I can't get this all down then I can always quit, but I'm trying not to since they may offer me a promotion when I graduate next year. And my income even part-time means Matt doesn't have to work crazy overtime. But we have to remain flexible. This is not the way we had expected things to be and at day 2 I'm still not sure how I'll feel in a week or a month.

He just smiled at me. I think he likes it here; the natural light, the quiet, and the constant attention of his favorite nurse (the only one with the boobies who also never pokes him.)

Day 25 in the NICU

2005-05-05T09:21:00.000-07:00

Today is 'Thanks-Mommies Day' at Janie's school, or at least that's how she describes it. I'll be going there this afternoon for tea. She says they will sing us songs, serve us tea, and give us a present. It's one of my favorite days at her school.

The other day I had to call the ostomy supply company. They needed my Visa card to ship Jack's order of supplies. The customer service operator asked what company we used to use for supplies and I answered none since he's a newborn. She then commented, "How sad."

I don't need her editorial. I look at Jack and he is so sweet and beautiful, and he is stubborn and fiesty and lovey and snuggly and so easy to love. He is not sad. It is sad that he's had to go through this and sad that we can't bring him home, but he is not sad.

I was furious and upset and set off driving to the hospital to see him. Almost all the way there I remembered that I forgot to drop off Janie's lunch. Oh crap! I had to turn around drive all the way back. When I got there it was 30 minutes after lunch had started so all the kids were done. And there was Janie, sitting at the table with her hands together with the biggest smile when she saw me walk in. She had been sitting there the whole lunch waiting for me. The teachers had offered her other food but she refused saying that I was on my way. Can you imagine if I had completely forgotten? Scarred for life! As an apology, I brought McDonalds so her and I sat together and ate our Happy Meals. All the other kids surrounded her. "My Mom buys me McDonalds." "Can I have a french fry?" "Did you get a toy?" "How come you get McDonalds?" She was a sudden celebrity and as the commercial says, she was loving it. The next morning when she woke up she asked if I could do it again.

For Jack the results of the halter came back good with only 8 abherrent beats in the 24 hours. They want to continue to watch him for a few days just to make sure it's controlled, but he wasn't leaving anyway because of the antibiotics. His diagnosis for his heart is called Atrial Ectopic Tachycardia (AET) which is a type of SVT (fast irregular heartbeats) but narrows down the location in the heart. From what I understand his heart is producing some extra electrical impulses. AET is somewhat rare, harder to control than other types of SVTs, and he may not outgrow it. Everything is a wait and see. My discharge orders will be to check his heart several times a day with the stethescope to watch for the fast rhythms. The thing is, he doesn't have any symptoms while he's doing it. He can actually sleep through it. This means his heart is strong, but also means that I will be paranoid as heck always listening to his heart. He can go for hours with this and be okay, but I just know that I'll be a big scared freak.

We were hoping to get him home early on home health but that's not to be. We have home health benefits through our insurance company, but they won't do it with a peripheral IV, only a deep line. We do not want him to have another deep line. The deep line goes to his heart which we do not want irritated, and it was in the deep line where the infection started which caused him to need these antibiotics. And a deep line is so invasive. So he will be there through probably Tuesday just finishing up these antibiotics.

I've been getting to know some of the mothers in the NICU. We can talk about our babies issues and our same frustrations and we can also glory in each other's babies. We can look past the wires and tubes and just see the baby. And we see each other every day. We have our post-baby weight and our no fuss hair and maternity clothes. We complain about pumping and we are happy and a little jealous of those who get to take their babies home. We also try to figure out how to juggle our lives with the NICU. I'm lucky in that I work from home. For those who don't, they're trying to figure out how to take more time off when their baby comes home, and how to find childcare for a baby with special needs.

Yet I want to get the heck out of the NICU. I want to bring him home more than anything. In the NICU, to get something to eat I've got to put him down, go downstairs, overpay in the cafeteria for bad food, eat it down there, come back upstairs, and scrub back in up to my elbows. If he were home I'd just carry him into the kitchen and grab something to eat while I hold him. In the NICU, if he falls asleep while I'm holding him, I can either put him down or keep rocking him but I cannot fall asleep. At home him and I could snuggle and nap together (co-sleeping). I'd also like to feed him whenever I want. In the NICU, to feed him I have to take him into the mother's room or pull the screens around to try to get some semblance of privacy. Some mothers don't, but I'm just not that comfortable with pulling the boobie out in the open. Jack's bed is near a walkway between NICUs so there's a lot of traffic. At home I can whip it out whenever he wants. And no more pumping or waking up super engorged. And of course I'd like to see my baby without driving 45 minutes. It's a lot closer than some parents have to come to visit their baby, but I'd rather he be in our home, always just right there.

Patience, I have no patience.

He turned a month old yesterday. I feel like not only is my maternity leave slipping away, but I'm losing all my newborn baby time. I wanted to spend this time with him, leisurely loving him and taking care of him. Time feels like it's racing past and I'm not going to get that time.

I'm kind of a sad sap today aren't I? I don't think so, it just comes out when I start writing sometimes. Really I'm looking forward to my tea with Janie.

I try to keep my sense of humor. When we were in San Francisco on Sunday I forgot to bring my handpump. I got so engorged that I felt like I would explode. During lunch I went into the bathroom and behind the stall door I worked on hand-expressing my milk into tissue. It was a long, tedious process but I learned what Falker in Meet the Parents said was true. You can milk anything with nipples.

More Guilt

2005-05-02T23:05:00.000-07:00

My best friend, her husband and two kids visited this weekend. It was a trip her and I planned months ago figuring that by a month out most of the family will have already visited and I will be feeling well enough for visitors. As all of this unfolded, we reconsidered, but since Jack was to be coming home on Tuesday then it seemed to be okay.

Yesterday we went into the city (San Francisco). We took the BART (light rail) in, took the cable car, ate seafood, rode the carousel on Pier 39, saw sea lions, visited the aquarium, ate ice creams, etc. While we were waiting for our cable car back to the BART station, Matt checked his voice mails and there was the hospital. Jack was having SVTs again (heart going super fast and very irregular). They had tried to call me but had the wrong number. So I grabbed a taxi and flew to the hospital.

Jack's heart was at it again and it continued for 12 hours. I was rocking Jack, crying, beating myself up for being away but at the same time knowing that it was good for Jamie. And the nurse says, "Did you have fun?" Yes. But I hated her for making me say so.

Jack is not going home tomorrow like we thought. We found out this morning that they knew on Friday that he'd be there another 10 days because his infection continues, but they forgot to tell us. With the heart problem, the wait continues.

Tomorrow he'll be on the halter monitor again. They increased his digoxin and added another drug (enterol?). If he stays problem free, cardiology will release him in a few days as long as we've finished our CPR training and are proficient with the stethescope. We may also end up with a take-home heart monitor.

He'll be on the antibiotics for his infection until next Tuesday. They don't want to release him until he's done, but we're trying to work out a home health deal to keep his iv at home but have a nurse visit. I'd like to be hopeful but I'm not.

Meanwhile the colostomy seems to be the least of our worries. Changing the bag is still hard and slow, but we're getting better.

I know that I can't be there every minute, but he only starts these heart issues when I'm not there, and they're started by a vigorous crying jag. When I'm there, I hold him and take care of him and he doesn't have such vigorous cries. It only makes leaving him harder.

Olden Days & Jack's Birth Story

2005-04-30T00:36:00.000-07:00

Today while my younger sister was visiting at the NICU, we got to talking about olden days, as in 'back in the olden days.' It started by me commenting on Jack's size, that he was born big because he was expected to take his first breath then immediately start pushing a plow. Then we had to revise it. Actually, he wouldn't have been born at all.

Of course we can't get pregnant without help. So I guess Matt was supposed to leave me since I would be considered barren (male factor doesn't exist in olden days, and women get all the blame). Janie would never had been conceived. If by miracle she had been (we needed IUI for her), then we both would have died in childbirth because of her size (nearly 9 lbs) and position (sunny side up plus head turned). So no Janie, no Pazel and no Jack.

Say by miracle I survived her birth, still no Jack because again we couldn't have conceived him in the olden days. But say he had been conceived (a miracle since we all know it took IVF which didn't exist in the olden days), then he would have died in childbirth since he was breech (and more reasons to be explained in a few). But, IF by some miracle he would have been conceived and would have been born alive, then he would definately died from the Hirschsprung's. So in many, many ways he is a product of modern times. A son of science. Still very much a miracle.

I mentioned his birth which I hadn't gotten around to telling you about. When we got home from the hospital things were so crazy with him crying, not eating, not peeing, not pooping, getting yellower, etc that I just didn't have the time or energy.

His birth was very planned because we knew that he was breech, he was big, and that I had a previous c-section. So we knew the date and time to come in. I remember that they gave me some funny drug to relax me which made me extremely sleepy. I kept taking 30 second cat naps on the operating table then waking up and asking Matt if the baby had been born yet. I was so afraid I'd sleep through it. They had to work hard to get him out. When they did, and I heard him cry, I cried. All that time waiting. All the fears during pregnancy. I heard him and believed. They all asked me his name and we didn't have one. He weighed 9 lbs 5 oz, not bad for 39 weeks and no gestational diabetes.

When they were closing me up, I closed my eyes and went into a semi-nap state. I could hear them having a conversation about schools. At one point I heard a male say, "We're taking this out, right?" My OB answered, "No. We're just tying the tubes." He answered, "Oh. I guess I'm so used to working on the 5th floor where we're always taking stuff out." Meanwhile I just layed there, not saying a word but very glad my OB was still in charge.

What I didn't know that my OB later came and told me was that it was "fortuitous" that our baby was born at that time. He was a double footling breech meaning he was sitting up in my ute with both feet in my pelvis, kind of like a squat. This position makes it very easy for the umbilical cord to dip down between his legs to the cervix and prolapse, or come out and get pinched off. This would cut off oxygen to the baby. She said that when she opened me it was already partially prolapsed. If we hadn't scheduled it for that day and that time... well... she just repeated that it was "fortuitous."

I was thinking about the word "fortuitous" again when the surgeon and neonatologist told us that if we hadn't brought Jack in to the emergency room when we did, he would have gotten much sicker. Another day home and he would have died. His intestines were all so very swollen and he was so dehydrated, that last day and night at home he didn't cry at all, just slept. He was in a lot of pain and just giving up. Life was too much. It hurts me to even think about it because you never want your baby to hurt or to give up. There's so much he hasn't experienced yet. And we would do anything to help him, we just didn't know. Maybe I'll have to have his middle name changed to "fortuitous."

To anyone pregnant, I hope I don't scare you either with the Hirschsprung's or with this birth story. The prolapse is rare since being in that double footling complete breech (squat) position is rare. And HD is only 1 in 5000 births, so is also very rare. So don't let this worry you or scare you in any way. Enjoy your pregnancy and when your baby is born, enjoy your baby. Take lots of pictures and don't listen to any horror stories including mine.

Wireless Revolution

2005-04-28T22:25:00.000-07:00

Yesterday morning was terrible. I walked in with my video camera to take a little movie of Jack to show to Janie. What I found was Jack sleeping in a puddle of his own vomit. It was caked over one side of his face, all over his bed, his clothes, and his blankets. I looked around and in this room of 10 babies, there was only one nurse who was far on the other side and very busy with another baby. Okay, I'll work on cleaning him up. His nurse or another will be along shortly. I start cleaning him up.

I want to take him out of his bed but the nurse has tethered his feeding tube to a giant syringe on the side of his crib. I read the notes and she tried feeding him for 15 minutes about 30 minutes earlier, then put the rest in this syringe to go in his tube. His feedings had been increasing so much that he's been throwing up when taking in large doses through the tube. I wait for a nurse, any nurse, to come into the room besides the one that is very busy (and a yell away). I wait a little more. A little more. There are no nurses coming in, only mothers. Besides the one nurse across the room, the usually busy room is completely empty of nurses. Is there some sort of party going on somewhere? Where are all the nurses?

Then I start to get upset. They left my baby alone! He was sleeping in his own vomit and no one noticed! This isn't some 3rd world orphanage, this is the NICU! Where is everyone? Finally a respiratory tech walks by, sees my face and asks if I need help. Yes, I do. Can you get a nurse? My nurse is on break but she's able to get another nurse to come into the room who immediately starts helping me.

By the end of the day I've talked to many people about it including his nurse, the charge nurse, the social worker and the nurse manager. No one can tell me how long he had been laying like this. Instead they tell me that nurses need to take breaks. Yes, I understand that, but shouldn't someone have been watching her babies for her while she was on break?

They try to tell me that the monitors were on so he was in no danger. Perhaps, but I don't want him laying in vomit. Besides, if monitors were all that were needed, then why have so many nurses? They need that human touch. A baby with a history of throwing up on a large feed needs to be checked on after being given an even larger feeding. A monitor is not enough. They need someone to look in on them now and then. A person who cares.

They also tried to tell me that this could have happened to me at home. No, I have a daughter and I never found her like this. When I'd feed her, I'd burp her and if she needed to spit up, she'd do it then. If I did lay her down in another room, I would have heard her get sick on the monitor and checked on her. Heck, I checked on her all the time anyway just to make sure she was breathing.

I tried to explain to them that it's all about trust. I can only leave at night because I'm trusting they are taking care of my baby. This means more than just making sure his heart is beating and his respirations are normal. This is about taking care of his needs. I don't think they got it. Even though they would apologize, they would follow it up with "But..." They have no idea how hard it is to not be there with him all the time. They see bad stuff all the time that a baby laying in and covered with vomit must not be that big of a deal. To me, it was very distressing. I'd had enough of the feeding tube.

So during rounds, the neonatologist and his gaggle of interns, residents and who knows who else (who all happen to be young and female and nodding at whatever he says) were discussing my Jack and his difficulties eating. I then offered up the information on how well he had done at the recreational breastfeeding. I sold my neonatologist on letting me breastfeed on Jack's demand (not scheduled) and suspending all bottle feeds while I'm there. (I think they also wanted to appease me considering that morning.) The free breastfeeding went so well that this morning they removed his feeding tube.(!!!) No more forced feeds. If they give him a bottle, they have to take the time to hold him.

Because we got a second culture back indicating infection in the deep line, they also removed that this morning. (!!!) He then had to have an IV put in and as much as I hate him getting poked, I'm really glad to have that deep line out. (He's finally wireless! I must have said that a million times today. No one gets it but I get a kick out of it every time.)

Today I got to unplug his monitors and carry him off into the pumping room for breastfeeding in private. No beeping, no people, no other baby emergencies, no fiddling with the scales or portable screens, just Jack and Matt and I. (Matt got the day off today on account of rain.) He latched beautifully each time and stayed on for regular feedings. It was like Pinnochio turning into a real boy. Jack was a real baby; untethered by tubes or wires or monitors and able to easily breastfeed.

Matt and I joked about taking him and running. I asked him to act as a block, and I'd run with the football. Our nurse warned us that she had installed lojack. He was not yet paroled, just on conditional probation with house arrest. It was just so nice to hold him and walk with him and feed him in private. The good news is that he should be able to leave on probably Monday or Tuesday when he finishs with the antibiotics. Actually, he should be home by now if it weren't for the infection and SVTs (that one time 12-hour heart trouble).

And I didn't have to pump once at the hospital today. I hate that pump. I really, really do. Pumping doesn't feel anything close to breastfeeding. It's so mechanical. So utilitarian. So cold and bland and colorless. I become a producer of milk instead of feeder of baby. Technically its the same thing, but I think you know what I'm trying to say. I'll be really glad to get him home and be able to pump only 'recreationally' if you know what I mean.

I'm starting to feel like I can exhale a little. I even left tonight at a reasonable hour. I'm very, very excited.

P.S. Thank you all for advice yesterday. I had to delete a couple of entries including last night's because Matt was fooling around on Netscape and found my sight after searching the name of our family's website. It had to do with the picture I had posted of Jack a few days back. Some people could find this in that way, then read what I wrote and take my personal feelings very personally... and so on with all my paranoid stuff. I read each comment at least a few times before I deleted the post and got some great ideas. Definately not assvice. I feel like Sally Fields in her famous oscar acceptance speech except to change it to "You get me. You really get me." I really have been beating myself up over all these feelings. Feeling that I am such a piece of dirt. You are so good to me, helping me up when I'm feeling so low. Thank you. Truly.

Also, although I say a lot of things about the nurses, almost all of them are very kind and very caring. There are a few kooky ones and maybe a negligent one here or there, but for the most part I really love them. They do take good care of Jack and try to see to what we need too. I'd love to think of something I can do for them when he finally gets to come home. I know it sounds funny considering how I started this post, but it is the exception and not the rule. Any ideas to express my gratitude?

3 weeks old today

2005-04-25T09:44:00.000-07:00

Yesterday we tried doing some normal things. We went to Costco and Safeway because we were out of food. Everytime I'd see a baby I'd think, "I have a baby too." I wanted to have his carseat or carry him in the sling or push him in a stroller. Janie pointed out every baby for me so I couldn't miss them.

After a while, things get so normal that they get abnormal. I can't just slip back into life before baby. It's as if we never went through IVF or pregnancy or ever had a baby and I hate that feeling. It's like pretending this never happened or that the whole pregnancy was imaginary. Like denying Jack that he's part of our family.

Suddenly in the middle of the store the panic will hit me. I've got to get to the hospital. I've got to be with my baby. He's all alone! And I can't get there soon enough. The problem is that I can't just ditch out on Janie that quickly. She's enjoying the normal day. By trying to leave I'm suddenly bringing her back to our messed up reality and she cries. And my heart breaks. I can't be two places at once and I'm torn. I can't race out of there, but I can't stay and keep my mind off him either.

Last night Jack had a long period of being awake. I held him facing me so I could look at his face. He's three weeks old today, but I swear he looks three months. He's got no neck, just a crease. He's got chubby cheeks, chubby arms, and roly poly legs. I nibble off each of his round toes. He was wearing a dark blue t-shirt that matched his eyes. I know he can't help it, but he smiled at me a few times. So beautiful. I started singing "You're just too good to be true. Can't take my eyes off of you..."

He ate nearly 15 cc's very easily, then fussed through another 10. He's getting better at eating, but still confused on the concept.

Do you know what a NICU nurse should never say to a parent? "See you next weekend."

Damn. I hate that.

Day 13 - Back to Normal Rhythm

2005-04-23T12:39:00.000-07:00

The digoxin worked. Yesterday his heart just went back to normal rhythm and speed. The cardiologist said he will stay on the digoxin for the next 6 months and we will be bringing him in regularly to have his heart checked. We also have to go through CPR and learn to use a stethescope to check his heart rate. They still don't know what caused it, and the cardiologist strongly indicated that it wasn't the deep line although I still have my doubts.

Then we were able to go back to starting him on breast milk. The problem with feedings in the hospital are that they are done every three hours when I've always believed in feedings on demand. Of course our little guy hasn't eaten in weeks so he can't demand. But it's hard to feed a baby at exactly 3pm when he's asleep. When I try to feed him, he screams. He doesn't have a strong sucking reflex, but mostly I think he's just not used to having liquid come out when he sucks. And, my opinion is that he's also tired from all the heart activity and has memories of feedings being painful back from his first days of life. After a lot of work and screaming, he'd eventually choke down 5cc's or the equivalent of a teaspoonful, then fall asleep again. Feedings are the only times he screams, and he really lets loose with it. Everyone looks over like I'm torturing him. He has no idea that feedings are supposed to be soothing times.

Yesterday Matt got to change the colostomy for the first time. I tried to help, but really Matt did everything. Before Jack can be discharged I will have to demonstrate that I can do it. It's especially important since he'll be home with me everyday.

Today Janie and I are hanging out together. A guy came by my house and offerred to pull the weeds for $20. Usually I would not even answer the door for some strange man I don't know. Yet, I'm not myself and far less afraid of things. Instead I accepted his offer and now I have a weed-free front yard for very little money. It will surprise Matt when he comes home. I don't think he'll even imagine that I did it, so he may be confused how it got done.

I could write more and have more to say on many things about all this, but I've got to get to playing. Janie is wearing her dress-up wedding dress and holding her baby ducky wrapped up in one of Jack's blankets. It's so easy to have her ducky play baby when we have so much baby stuff in the house not being used. Maybe we'll make cookies today.

(Wrin - You did a great job translating my vague understanding into the exact stuff the cardiologist said. Thanks!)

Day 12 - Easy Day, Hard Night

2005-04-22T00:19:00.000-07:00

Today we had our education class. It was us and another mother whose baby also got a colostomy. As the ostomy nurse was teaching I started to get panicked. It was similar to when I was trying to learn how to scuba and first went underwater with the respirator. My brain said, "No. I can't do this. My baby doesn't need this. I can't do this. I can't." I tried to give the outward expression of someone who is listening, but inside I wanted to run away, far away, where babies are born healthy and I never have to see another picture of a prolapsed stoma. When it came our time to practice on the doll, I had Matt go first. Seeing him do it made it easier for me to do it. And I could. Of course doing it on a baby who is moving around with real skin and real stoma will be something else. We'll see.

The ostomy nurse also gave me a doll that has a stoma. The dolls are made to give to kids who have stomas so that they can have a doll like themselves and play at putting on the "appliance". (I hate the term appliance when used in this context. Sounds like I'm putting a toaster on my child.) Anyway, I'm going to be giving this doll to Janie when I try to explain about her brother Jack. I have no idea yet how I'm going to do it, and there certainly aren't any books specific to this situation, but it's going to have to happen at some point.

We tried to give Jack 10cc's of breast milk today (like a thimble full) but it wasn't received as I had hoped. Once again I had imagined that he would love it and melt into my arms as I fed him. Instead he cried and fussed as I tried to feed him. He finally took about 5 cc's then threw up green all over me. It was then decided that maybe it was still too early for breast milk, so back to Pedialyte.

At about 2pm I suddenly remembered that I had a paper due today for one of my classes. I quickly pumped then drove to school and wrote possibly the worst paper in my college career. I had attempted to explain how the experience of being a patient's parent had given me new insight into healthcare which will make me a better hospital financial analyst. My recommendation was for every non-clinical leader such as in Administration or hospital Finance to each year shadow a clinical person to keep a perspective of a patient and/or caregiver. Unfortunately, because I wrote it in such a short time it came out all over the place.

When I got back to the hospital, I knew something was wrong when I saw all the nurses and doctors crowded around Jack. His heart was too rapid and too irregular. Instead of the usual 170 bpm, it was ranging from 210-300 but was all over the place. They said it's some sort of irregular electrical impulse. They don't know the cause. First they tried pulling back on his deep line to fix it. (The deep line goes into a vein on his wrist and threads its way into his heart.) If the deep line caused it, then this would have fixed it, but it didn't. Then they tried giving him one and then two doses of some medicine that also generally has immediate effects, but that didn't work. Then they had to draw lots of blood to check his blood counts, electrolytes (normal) and blood culture for infection (takes 3 days to get back). They couldn't get enough blood to do the blood count because he was screaming and making his heart go too fast, so they will try again in the morning. Finally they gave him another heart drug called dig-something which he will be getting every 6 hours. This drug is supposed to have a slower effect, so we may not see anything immediately.

He was moved out of his little private room, back to front and center where he could be monitored better. When I held him again he had all the EKG wires on him, an IV in his scalp, plus many new purple bruises on his scalp, hands and feet from where they tried to get blood. I hate that. I really do.

Tomorrow he will have an echo (I think echocardiogram) which is best desribed as an ultrasound for the heart. The cardiologists conferred tonight and will meet with us tomorrow morning. Usual suspects for this type of sudden heart problem are things such as the deep line tickling the heart, infection, something they're born with, or unknown. They don't think its infection because he shows no other signs. They don't think its the deep line because they pulled that back. They doubt it could be something he was born with because it didn't show up until now. That leaves us with unknown. Unknown. He has a problem with his heart of which they don't know what caused it or how to fix it. &*$$@#&*%

So my heart is having a hard time beating tonight. I had the worst time leaving him, but I needed to get home because I have to get up with Janie tomorrow and I want to get to the hospital as early as possible. Luckily Matt will be there first thing. He's convinced its infection. At rounds in the morning the neonatologist had discussed how well Jack was doing but had also said that there was always a possibility of an infection from his deep line. I took it as another one of those cya (cover your @ss) sort of warnings. All day long Matt had been saying that he felt something bad was going to happen because things were going too well. When it all went to hell this evening, Matt kept telling me that he knew it. He knew it was going too well. He knew something bad would happen. Like the end of every horror movie when the monster who was supposed to be dead comes back. I just kept telling him to stop it. I don't want to hear about it. I know, but please stop. All day I had begged him to let it go, and then he was right. And I'm back in hell again.

Do you ever feel like just looking at the sky and yelling, "What? What?" I'm not religious, so it's not anger at God, just a question I'd like an answer to by whatever or whomever. What do you want me to do? What do you want from me? What more? What?

Driving home tonight I passed a dead deer laying on the side of the road. I almost lost it altogether. You know, final straw time. She looked like a beautiful deer, probably the same one I saw grazing at the park near my house just a few nights ago. I just don't fu-king get it and thinking about my son with his heart working too hard or the deer just laying there I just don't get it.

I'm sorry this ended so badly. It's been another difficult night.

Day 11 - Some important milestones

2005-04-20T23:52:00.000-07:00

Yesterday was a tough day. Jack was in pain most of the day. We couldn't touch him or he would cry. They didn't want to increase his morphine too much because they didn't want him to end up intubated (tube down his throat to help him breathe) and they also wanted his intestines to wake up and start working.

Then at 9 last night, he woke up. He looked around. He was the happiest I've seen him in a long time. I could touch him and we could even take his blood pressure without so much as a fuss. By 10pm I was holding him again, which only made me stay until after midnight because I had missed holding him so much.

When I got to the hospital this afternoon, I got to feed him. It was pedialyte and only a tiny, tiny bit. He's never really had a meal and hasn't tried to eat in 10 days, so it was very confusing to him. I think he hates the taste of pedialyte. He'd take only a suck or two then scrinch up his face to show us he hated it. Every three hours I'd try to get him to eat a little more, and he'd make faces or cry or fall asleep to avoid it. Tomorrow we should be able to start him on breast milk, which I hope he likes much better.

Tonight he also had his first stool into his colostomy bag. Our question had been what he could be pooping since he hasn't eaten in so long, but apparrently your body sloughs cells and such even when you're not eating. Learn something new every day. To me it looks like left over meconium. The bag over his stoma is clear and his first poop in it was pretty disgusting (looks like seaweed, sorry), but to us it was reason to celebrate. He needed to demonstrate that it worked and that the intestine we've kept is good so that we can get the green light to move on to food.

Tomorrow at noon we're going to a class on caring for the stoma and changing the bags and all that. It's held by the ostomy nurse who is very, very nice. She's already gave us papers to read, and so far it looks to be a very intensive procedure to change the bag. But, she promises what will take us 40 minutes now will one day soon take us only 20. Also, what surprised me was that the bag only needs to be changed every 3-5 days?? I figured it would be at every diaper change or at least once a day. There's so much I need to learn.

I am starting to feel a little better. I'm able to turn on the radio and listen to music without crying or finding it totally inappropriate. I even curled my hair today - a huge accomplishment. I've been looking like the train wreck I've felt like. Last night I even went to my class at Berkeley for 2 hours. The class applauded my return and asked me how I was feeling. I answered exhausted and many chuckled since they don't know about the NICU and figure I'm just tired from being up with baby. I wish.

One of the things I'm looking forward to is breastfeeding at night. I pump right before I go to bed. When I wake up in the morning, my breasts are so full that I could probably put out a fire accross the room without ever getting out of bed. Tired as I am, I have to get up and pump. With our daughter, she co-slept with us. During the night I'd feed her right there in our bed. Sometimes her and I would stay up and watch Letterman and Conan when she had the big eye (husband's term for wide awake). Because I fed her during the night, I never woke up super engorged like I do now.

Janie has been faring okay. The other day she broke down when a ladybug flew away off her hand. "The ladybug doesn't love me. She flew away from me. She doesn't want to play with me." It was obviously what she was feeling about this whole Jack situation and not the ladybug. Even today she got upset when I asked her to clean her room and told me that I don't love her because I make her clean her room. I only love Jack and Daddy. I had been trying to decide if her being upset was manipulation or real, but figured to treat it as real because of all that's going on. Later she told me that she was fibbing because she knows that I love her with all my heart and soul.

I guess that's the other thing I'm looking forward to. Getting Jack home so that Janie can spend time with him. I want to be able to hug them both at the same time. The two halves of my heart in one spot.

I can hear Matt snoring in the bedroom. I'm going to have to go in there and make him rollover so that I can sleep. He hates that. This week when I've gone to bed he will wake up and ask me how Jack's doing, since I have the night shift at the hospital. Tonight's report will be that he's doing good. Hates pedialyte, is pooping in his bag, and was sleeping well when I left. That should be good enough to get him to rollover and sleep well.

-----

And to all of you who have been commenting - thank you! I read them every night and want to respond back to each of you but I've been too exhausted to do much else than write an update. The support has been so important to me and kind of boosts me up when I'm making my slow shuffle into bed. I have also really appreciated the advice of those who've been there either in the NICU or having special needs kids, or having had an illeostomy or child with HD or knowing someone with HD. I plan on looking into that online support group as soon as I'm human again. I think I aged at least 10 years last week. There was a moment in the hospital where I felt that I couldn't handle it and had reached my end. I actually imagined standing on the roof looking over the edge. Every time my heart beat it hurt. But then I thought of Janie and thought of Jack getting older and I knew that my only option was to deal with it. Pazel, deal with it. And as much as I thought I couldn't, I didn't have a choice. I had to. And taking all the bad news each day and watching him in pain or hungry or just laying there with the monitors took away all my thick layers of protection. I had to take everything moment by moment and forget everything else. I had (have) no idea what day it was, what the news was, or what the weather was. I didn't care so much about what I looked like or finding the right words, or other people's feelings or family conflicts, or my job or my school or the bills or a-n-y-t-h-i-n-g. I could drive through the city of Oakland at midnight and not be afraid - for my baby was sick and no one could hurt me more than that. I say all this but I'm not through it or past it or much better. Well maybe a tiny iota better because I feel like we're climbing back down from Everest and so we will eventually reach the ground again. I am starting to have hope again. I'm afraid. I've been burned. I thought we had it at his birth when I heard him cry for the first time. I think I probably cried more than he did. I'm so afraid of trusting and having him get sick again, I don't know when I'll relax. I don't know. I'm not there yet and I don't know when that will come.

And I've totally sidetracked my point which was to thank you for all of your kind words, and your hopes and prayers. Above all, I do still feel very lucky to have him. If there was a choice, of course I'd rather not have had problems so that we all could have avoided the pain. Yet, if it was to have him as he is or not have him at all, of course I would choose to keep him. I think if you met him, you'd fall in love with him and you'd do the same.

Day 9 - Evening Update - Stoma

2005-04-19T00:09:00.000-07:00

This morning we got the news that the HD has only affected half his large intestine. (YAY!) The doctors were very surprised as they expected that all his large intestine would be affected, and possibly some/all of his small intestine. This will make a huge difference as to his future quality of life. Our big gamble to not put in the illeostomy during Friday's surgery and instead wait to see if any of the large intestine was okay actually paid off. We could not believe it. Something good has gone our way for this little guy.

Who ever thought we'd be happy that our son would get a colostomy?

Of course our joy was overshadowed by reality. The nurse practioner gave us directions on how to care for a stoma and it is very detailed and seems overwhelming. She said that tomrrow we will learn on dolls, then eventually try our skills on Jack. She also went on to explain how we will probably be bringing him in to their clinic once a month to get everything checked out until his final surgery 8-12 months from now.

The physicians stopped by to talk about his next surgery, the one to put in the stoma. The neonatologist also talked about all the possible side effects of having a stoma and of later having the final surgery. There will have to be a few dietary things to watch for lifelong, and potty training for pooping may be delayed, and he may get bad diaper rashes as an infant. So far nothing we can't handle.

The most surprising thing was that he did end up on the surgery schedule this evening, and has only been out of surgery the last 3 hours. We thought it wouldn't be until tomorrow.

It's hard for me to look at the stoma. They describe it as a rose bud, but to me it looks like tiny lips puckering on his abdomen. There is a clear bag on it which right now only has blood in it. Very scary. Very intimidating. I'm hoping to be able to hold him tomorrow, but I'm a little scared.

I hung out tonight watching him after the surgery because he was in some pain. They were giving him morphine, but it didn't seem to help. If they'd lightly touch him or talk he'd wake up and make a cry face. Very sensitive. When I left they were ordering him a morphine drip so that he could get the medication more regularly. I hate the pained and tired cry. I hope that after this we won't have to hear it again for a long time.

So the good news is that the surgeon says we should be able to start feeding him in about two days. The closer we get to feeding him, the closer we get to taking him home.

The bad news is that this is all still so very hard to take. Sometimes I'm right on top of it, smiling and ready to learn and accept. The next minute the wave crashes over me and I'm feeling scared or sad or angry or still in shock or some combination of all or any. He's just a baby. It's not fair to start out life this way.

I could continue, but I'd better not. Then I'll just start crying again until my nose is all stuffed up and I can't sleep.

Today the neonatologist told us that since this is genetic, we need to speak to a genetic counselor before we have another baby. We told him that we were done. For sure. I had my tubes tied at Jack's birth and everything. I'm very glad we did it at his birth and not afterwards so that he will someday know for sure that it's not the HD that kept us from having more babies after him. Actually it was the infertility rollercoaster nightmare and a chance to escape it while we had a chance.

Tomorrow will probably be a tough day as he is recovering from tonight's surgery, but I'm glad that we're now headed towards home. There's much that I have to do and learn and get over, but he's going to be okay. I just know it and have to believe it. And that's all that matters right now.

Day 9 - Morning Update

2005-04-18T09:29:00.000-07:00

No word yet on the results.

Over the weekend, I spent less time at the hospital (only 6-8 hours per day instead of 12-14) and more time with Janie. It was nice to have a break, but at the same time it was very difficult. When I'm at the hospital I feel guilty that I'm not with Janie. When I'm with Janie I feel guilty that I'm not with Jack. Two kids but I can only be in one place at a time. I'm looking forward to when they are in one house so I don't feel so split in half.

Yesterday Jack got to put on a onsie, first time wearing clothes in a week. He was also moved from a 'table' to a crib. I take these as positive things.

Today he turns two weeks old. Here's what I've learned about Jack (besides HD) in that time:

His scent. It's sweet and familiar but hard to describe. Kind of like lemon cookies.
He hates diaper changes, getting his temperature checked, and the blood pressure cuff.
He loves to be held. He snuggles in and stops crying.
He likes to sleep with one arm up. It doesn't matter if he's sleeping in his bed or being held.
He loves his pacifier. With our daughter I was very anti-pacifier so she never used one. With Jack, he gets so hungry but he can't eat. He'll suck on that pacifier with a fire and determination, and it usually helps him to relax a little.
He farts. The doctor said it doesn't mean anything as to the health of his plumbing, but each time he does it I get a little hopeful.
He likes to sleep on his tummy with butt in the air. He can sleep on his stomach at the hospital because of all the monitors. He's going to be upset when he gets home and can't sleep on his tummy any more.
He has the tiniest eye lashes. And his brown fuzzy hair is so nice to touch. I can't help but stroke his head all the time.
He is probably the largest baby in the NICU, and to me looks to be the healthiest looking, breathing room air and having no emergencies. He's very quiet and content, so probably the easiest baby for the nurses.
He is irrestistable. I can't help but love him.

This weekend as I was playing with Janie and working on chores, it's easy to forget a few minutes that I even have a baby. I'm not pregnant anymore. There's baby stuff everywhere, but it's all brand new and unused. I have to pump every 3 hours, but I really haven't been able to have a full feeding session with an actual baby. I drive around with an empty carseat in my van. It's like I don't have a baby but that the whole thing was a fantasy. I created the miracle pregnancy and beautiful baby in my head.

But then I go to the hospital and I get to hold him. And I feel like his mother and that he is my baby. I smell him, I touch him, I kiss him, and just stare at him as I rock him.

I'm scared of getting today's results. That it will send Matt and I back down to that dark place. That my baby is then going to be able to go into the next surgery at a moment's cancellation. That he will be in some danger again while he's in surgery. That it will end up with a stoma for sure. There's no avoiding it, and I know it will happen, but even now I still hold out the tiniest hope that maybe they're wrong. That all these biopsies will turn up with cells and he will only need a small operation.

So foolish.

Day 6 - Confirmation

2005-04-15T22:58:00.000-07:00

Although our meeting was at 8, we were finally able to have it at 11. The delay was unavoidable because of other surgeries the surgeon got called into. We all sat down in the conference room; the neonatologist, the surgeon, a social worker (better one then the one we'd had since this one was more interested in helping than hugging), Matt and I.

The meeting started with the results of the biopsy from yesterday. It was confirmed that it is HD. There were no nerve cells. The next thing to find out is the extent. How much intestine lacks the essential nerve cells?

We asked many questions on the next surgery. Many. Only an hour after the meeting little Jack was wheeled into the OR and didn't come back for nearly 4 hours. During that time I couldn't help but imagine the worst. That they couldn't revive him or he stopped breathing or they found something worse wrong. By the end, I was so happy to see him alive and peacefully resting in his isolette that I really didn't care about his small incision.

For this surgery, they did 5 biopsies of his large intestine and removed his appenidix. Test results should be back on Monday. If his appendix has the cells then the small intestine is probably okay. They would then check the 5 biopsies to see where in the large intestine the cells start and stop, a.k.a the transition zone. In a surgery on probably Tuesday he would have the stoma put in above the transition zone, which means having the intestine exit the body out the abdomen.

If his appendix does not have the cells, then the small intestine is probably not okay. Then in the surgery on Tuesday they would open him up for taking samples of his small intestine. And he would still end up with a stoma, but farther up. Maybe at that surgery or another after it.

Basically, in about 75% of HD cases the transition zone is very clear on the films from the barium enema and x-ray, and usually is somewhere in the lower intestine. For our son, it is definately not clear, so much so that they think that his whole lower intestine is affected, and it could reach through all his small intestine too. This is worst case scenario, but it looks like it may well be the case. One can have a good life without the lower intestine, but things are not so good without the upper one.

So we've gone from hoping for a bad case of constipation to hoping we can save some small intestine.

This really sucks. I'm sorry, it just does. I don't have a better vocabulary than that to describe it. If your child looks sick, you are dying for them to help them get better, whatever it takes. But with Jack, he looks so healthy and perfect. It's so hard to hand over such a beautiful child for yet another operation and knowing that there will only be another on Tuesday.

What they offerred to do today was to do the stoma at the same time as the biopsies and appendectomy but it would be at the junction between the small and large intestine. Although they do believe that the whole large intestine is affected, I'm not there yet. I couldn't handle the thought of giving him this stoma yet. Not yet. I wanted the results of all these biopsies. I want to know if there's any chance of saving any of his large bowel. Please. And I'm not sure if we made the right choice or if we're just subjecting him to another surgery, and nothing could be more painful for us.

Tonight Matt had to rush out to mail or papers to file for a tax filing extension. Needless to say, we didn't get our taxes done in time. Then we stayed late at the hospital with Jack. When Matt got to the post office, there was a big sign saying that they closed at 11pm and it was 11:15. I went online and couldn't find another one that stayed open any later. I couldn't handle it. I broke down over the stupid taxes. Then just now he called and said that a nice woman met him at the door, took our envelopes, scolded him, but stamped them today. It seems like such a small thing but such a large thing. We just need something to go in our favor. I'm tired of bad news day after day. Of nothing ever going our way. I can hardly hold myself together anymore. It's amazing I make it home each night, but I guess some deep part of my brain takes over and drives.

So this weekend will be all about waiting and watching Jack recover from this surgery to get ready for next week's. And I promised Janie that tomorrow her and I will have some fun. She asked if we can go to the park. Baby, what a small order, I'd be glad to take you to the park. I'll push you on the swings as long as you want. Until my arms fall off.

Day 5 - Anger

2005-04-14T23:00:00.000-07:00

I ran out of the shower to answer the phone and it was my husband. They were rolling Jack into surgery. I did not get my questions answered. I did not get to see him off. I was pissed.

After the surgery (he did fine), the nurses in the recovery room were telling me how cute he was etc, but I couldn't say a thing except that the surgeon didn't bother to speak with me before the procedure. They paged the surgeon who amazingly decided to make an appearance. When I reminded him he didn't talk to me, he said he talked to my husband, as if that would be enough. Matt is not a surgeon and he could never answer my questions. I find that excuse to be very weak. How does a surgeon reconcile to himself that it's okay to perform surgery under general anesthesia on a 10 day old baby without first talking to the mother? I felt that I was being punished for pumping. If only I hadn't been pumping I would have been by his bedside at the time the surgeon came around.

So the surgeon, while checking the clock and his beeper all the while, finally started to explain what he did that day, the results of Tuesday's biopsy, and what may come next. This was all in maybe 5 minutes at best, but that's very generous. At the beginning of each thing he would say that it was too complicated and complex but he would try to explain anyway. Like he's repeatedly telling me that I'm too stupid to understand. What makes them complicated is all the stuff he leaves out. He told us that if Jack has HD, then the next surgery will be opening him up, taking multiple biopsies of his large intestine, then routing the end of the small intestine outside the body (stoma). The multiple biopsies are to determine the good and bad parts of the large intestine, but then they end up skipping all that anyway with the stoma. Why?

(I also found out that we may not get the results of this test until Monday or Tuesday. Well you know the pathologists don't work weekends. So I'll have a hungry upset baby on my hands all weekend so that they can have fun. You know, I used to work weekends and I know it sucks but some things need to continue. I think healthcare is too important to just shut down for those days. Why not stagger days off so that someone is always covering the weekend so that kids don't have to suffer through it waiting for Monday?)

Of course the surgeon had to go. And I was still pissed. I didn't get my information and I wasn't near satisfied. I was so angry that I couldn't talk.

We wheeled Jack back into the NICU where every nurse seemed to see my tears and decided to come see how I'm doing. I just shook my head. I didn't want to talk to anyone. Not now. This only spurred them on. Now I've got not only every nurse in the room but the nun and social worker coming to me to try to talk me about my feelings. I'd close my eyes, put my head down and just wait for them to back off. I'm not in the mood to talk about my feelings! What I need is information, not counseling! Why is it that each one has it in her head that she's going to be the one I'm going to want to open up to? Can't they see from my reactions to all the offers that I just want to be left alone with my son and husband for awhile?

I stewed. Just sitting by his bedside. I didn't pick him up because I didn't want to hurt him, or wake him up so that he would remember how he was hungry. At one point Jack was obviously in pain so I got the nurse to get him some morphine. Why do I have to track someone down for this? Why can't it be anticipated that after surgery he would need pain meds?

After about a few hours of silence, Matt and I went to lunch. We didn't talk during the whole lunch. At the end, I finally started talking. I told him how angry I was that they wouldn't give me information. I told him that I wanted them to tell us why we can't try feeding him to see where the blockage is or how he handles it instead of going to surgery. I wanted to know why they would do all the biopsies on his large intestine just to bypass it in the same surgery. Why can't he do the biopsies laproscopically or the POOP procedure where they do the pull-through at the same time so that there is no stoma? Many many such questions. We decided to demand a second opinion, especially from a pediatric GI physician instead of a surgeon.

Back in the NICU we requested as such to the nurse. He told us it was a good decision and then asked us why. We told him and the strangest thing happened. He told us that he had Hirschsprung's and then started giving us more information than we had gotten in all the other days in the hospital from everyone else combined. It was incredible. He explained how feeding him could cause infection or death of intestine and so on that would be dangerous for our boy. How come no one told us this stuff earlier? He gave us first hand information which on such a private matter as a colostomy is a big deal. He also printed out some things for me. He told me that by all indications and early test results my boy probably has HD, but that no one wants to tell us that until they know for sure. I appreciated his truthfulness. It helps me to prepare for these next surgeries which will be even more invasive.

But once I started my rants on not getting information, I couldn't be stopped. The other nurses tried to tell me, "Oh, all surgeons are like that." As if that is good enough. I don't care if all surgeons are like that, I need more. They brought over the neonatologist and I expressed myself. He started explaining things, such as that they would have a pathologist checking the biopsy slides during the next procedure while it was going on so that they would keep as much of the intestine as possible. This is new information too.

In the end, we told the neonatologist that there was too much that we didn't know. The current operating procedure of only getting to meet with the surgeon on some wild chance that our paths crossed and he had a spare minute to give us wasn't working. We need a sit down meeting at a set time and I would accept no less.

So we're meeting with the neonatologist and the surgeon together tomorrow at 8am for a sitting meeting. Good.

And I've been writing down my questions. And some of them are with regards to this surgeons experience with HD and proven outcomes. I want him to sell himself to me rather than just expect me to just accept that he's supposed to be fabulous.

I've heard that anger is one of the steps in the grieving process. Maybe this is it. Or maybe I am just angry because I have good reason to be angry. We deserve communication and information, and I sure as hell should be consulted before anyone cuts on my son. I wish I could walk into that meeting tomorrow as a sharp and cool business self, but unfortunately that woman is currently on recess. Instead it will be the emotional near basket-case that all this stress, no sleep, post-partum hormones and possibly pain on my baby have created. It's not fair. It will take all I have to make it not be just a rant session. My goal is information for my son and to see if it's worth it to keep this surgeon. And I'll probably still ask for that second opinion. Insulting to him? Who the hell cares.

Day 3 - His Due Date

2005-04-13T08:23:00.000-07:00

Yesterday 4/12 was his due date and he turned 1 week and 1 day.

All in all it was a much better day. I got Janie ready for preschool in the morning while Matt got up early and went to the hospital. Matt's job is to leave early from the hospital to pick up Janie from school, give her dinner and a bath and get her to bed. He normally picks her up every day and does all the evening activities while I'm at school. The only difference is that I'm not at school, I'm staying late at the hospital with baby Jack. We can't cover the whole clock this way, but nearly so. Matt and I also get to be there together during the day and have a quick lunch together. He was so positive and sunny when I came in yesterday, it was very contagious. He's a morning person (usually waking at 4:30), so loves having our morning shift.

Janie is doing well but she misses her baby. She asked me when I was going to have another baby in my tummy; I guess because this one didn't work out so well for her. Months of waiting to have only two days of being home. Kind of a tease for a 4 year old.

When I got to the NICU Matt told me that Jack had opened his eyes and had an awake period. He also got the tube taken out of his rectum so he was able to hold him, the first time for either of us since we brought him in on Sunday. They brought over a rocking chair and then I was able to hold him too. For as long as I wanted. If you can hold a baby too much, that will soon become Jack's problem. But of course I don't think you can.

In the afternoon they did the biopsy. It only took about 15 minutes, but that's still a long time to wait in the hall away from him. I also don't recommend a pasta lunch right before a biopsy on your kid. Like whenever they do something to him, it made me really sick to my stomach, but the pasta made it worse. I guess the biopsy went well since they said they got plenty of cells and he didn't have much bleeding from it. He slept the rest of the day from the morphine.

So now we wait. 3 long days to get results.

Matt and I hold out hope that he just had a sticky meconium plug and that all this is just to rule these other things out. That hopefully we will get back conclusive negative results so that we can get him home sometime soon. Our pediatrician (who has come to the hospital every day) says not to get too hung up on this HD diagnosis. Be glad not to if you say that.

Late last night Jack started to get upset. The morphine wore off and with his tummy and intestines now being totally empty he's very hungry. He's getting all his nutrition through his veins but doesn't know this, he just wants to eat. The nurse begged me to stay as long as possible to rock him because it calms him. I don't need any begging, although it did have me stay even a little longer, until while rocking him I kept nodding off and getting that head jerk. It's like when you're driving super late and want to get to your destination to rest so you try rolling down the window or singing really loud or rocking your body to stay awake but there's only so much you can do before you have to pull over and take a nap on the side of the road. I couldn't do many of these things while rocking him, and seeing him sleep peacefully calmed me and made me sleepy too. I couldn't last as long as long as I wanted and the nurse was sad to see me go. Jack was making his transition from the quietest, easiest baby to the biggest complainer on the block. When I was leaving she was working on getting him a little swing and radio to distract him from his hunger. And every step out of the NICU killed me, but I could barely hold my head up.

I slept a long time last night. My sister flew in from San Diego and she's taking Janie to school right now. I appreciate her help, but at the same time we wanted to keep things as normal as possible. Matt is not happy about her being here for just that reason. But, if she wasn't here right now I would not have time to type this and for the shower I'm about to take. I feel good knowing that Janie's life is appearing somewhat normal, and that Jack is having either Matt or I with him. It's our little system.

So speaking of which, I'll take this opportunity to shower now. I woke up drenched in milk because I had slept through one of the pumping sessions. I'd rather be more rested anyway so that I can stay later tonight. He sure is beautful. I know I say that a lot. It is really nice to rock him and hold him and just look at his sweet face.

Day 2 - Denial Runs Rampant

2005-04-11T22:49:00.000-07:00

Today we drove to visit Jack in much better spirits. We even put the car seat back in the van to have it ready just in case. You know how it is. To not have it would mean that he would not be coming home. To have it means we're ready to leave at a moment's notice.

Shortly after we arrived, another baby in the NICU died just a few feet away. Even though they had the screens up and by courtesy you avoid looking over, you know what's going on. You can't help but hurt for the parents. The baby was a sick early premie, one of twins except the other twin isn't in the NICU and would be too little to be home. I couldn't help but think of Tertia.

On the opposite end of the spectrum, Jack was looking very good. After being under the billi lights all night his skin color looked much more normal. After being flushed with saline every 2 hours, his abdomen also looked normal. He looked so healthy and beautiful that I just wanted to take him home. Thank you for helping. Obviously he doesn't belong here. You've all done such a fantastic job and we really appreciate it. We'll be taking our baby and going home now.

Instead we were approached by the NICU social worker who wants to set up a meeting with us and gave us a discount for 30 days on parking. We don't need it for 30 days. We'll be leaving anytime now. And the neonatalogist told us that they wanted to put in a perk line (definately misspelled) because it will last a lot longer than some of the others he has in. Why go through the trouble on such a healthy baby? It's not like we'll be here much longer. And a nun came up to hug me and give me prayer options. Thank you but there's so many other babies in here that really need your help. Jack is just fine.

Denial ain't just a river in Egypt sweetie.

Eventually the surgeon came and talked to us. He would be doing a biopsy of Jack's rectum tomorrow to test for HD. Then it will take 3 days to get the results. And there is only a 50% chance of getting conclusive results either way. If we don't get clear results, then another biopsy but this one a bigger one. And another wait for results. And if we do get clear result of yes, then we have to do biopsies until we find out where the diseased intestine ends and the healthy part starts. And if we get a clear result of no, then we have to do other tests to find out what is wrong.

(Sorry for skipping around, but my mind is very scattered. And my spelling and grammar are worse.)

This morning when the neonatologist visited with us with his intern, he told us that there is another possible reason for the GI issues. "He could have cystic fibrosis. We'll do a DNA test for it, but it will take 2 to 4 weeks to get results." He said this like "We could have steak for dinner, but it would require heating up the grill." It's like he didn't even know the significance of his words. I just looked at him because I couldn't figure out his nonchalance. What do you say to that? Frankly, my stress account is already full, so I slipped this one into my back pocket to be opened later. Because we don't have any CF in our families, it is only a small possibility, but one that has to be considered if he doesn't have HD.

And here I thought that if he doesn't have HD we were going to be happy.

When we were talking to the surgeon about the biopsy and possibly following biopsies, Matt really went after him with questions. If I'm too compliant a patient, Matt can be too noncompliant. It's only because he knows they make mistakes and love to do surgery, and can miss out that these are real people they're working on. He wanted to know why we couldn't just bring him home, feed him, and monitor him to see what happens. The surgeon told him that we could not take the baby out of the hospital, and this really rubbed Matt the wrong way. This is still our baby. The surgeon had to stress to Matt that the baby was very sick yesterday, and his intestines were extremely swollen. He's still recovering and healing from the trauma. He's not taking any medication that would make him sleepy, yet he's slept ever since he was admitted, at that point 24+ hours straight. A healthy baby would have periods of being awake and now that his belly and intestines had been empty, he should be very hungry and upset but he's not. His X-rays were abnormal, and we have to remember that we already tried the test of bringing him home and we know how that turned out.

But what Matt was trying to say was not his words said but were feelings from his heart. What he wanted to hear was that everything was absolutely, positively necessary and not too invasive. He needed to hear that acting seemingly slowly may be very hard on us, but was in Jack's best interest and their goal was to get him home as soon as possible but safely. And he wanted to know what was wrong, and how bad, and what for sure was going to happen, and when he would be coming home. But there isn't an answer to these last questions and although Matt knew it, it was what he really wanted to know. And of course I did too.

So at this point we know nothing except that we have to ready ourselves for a much longer stay than we expected. This point all by itself is devastating to us because it is so hard to be away from him and everything about the NICU seems so serious and wrong for our baby. I can't imagine what will happen if he has HD or CF, because I don't want to. I have to hold out that he's healthy but needs time to heal, and they have to run their tests to rule everything out. Matt says he wants a "Do Over" where we go back to when we happily brought him home from the hospital. I want to bring him home too but be able to nurse him without him screaming. I look around here at the house and I can't help but think that we were so close to having it right. This is not how it's supposed to be. He is supposed to be home and healthy. He's supposed to be sleeping between us right now, waking to nurse and making his little cooing noises. Our daughter is supposed to be holding her baby brother instead of asking me when he's coming home. And I'm supposed to be feeding him instead of this constant pumping and freezing.

Nothing else matters right now. I called our maid service this morning to postpone the service, and they said they would be charging us $25 fee for not giving enough notice. I'm sorry, our baby was just admitted Sunday when you were closed so I'm not sure how I would give you more advance notice. I'll pay the fee, but you Merry Maids have just lost a customer.

Work and school don't matter. I have to remind myself to file an extension for our taxes because they will not be done on time. My husband cancelled the appointments for his car service and the cable company installing HDTV. We have to remind each other to continue to give our dog her antibiotics. And I find myself becoming totally intolerant of everything because all my tolerance is being used up by everything going on with Jack.

It's amazing that even when things are down, we keep on going. I sit by little Jack's side, rubbing his head, holding his foot, or just gazing at him, and it's starting to feel normal. Today I pointed out how Jack is making sucking motions with his lips.
"He's dreaming of breastfeeding. He's saying, 'Oh Boobie, I'm so sorry I turned you away. I miss you and I know now how wrong I was. You are so beautiful Boobie with such a lovely dark huge nipple, and I know now you were just trying to take of me. Come back to me Boobie. I swear I'll make it right this time. C'mon Boobie, let's try this again. If you come back, I'll never let you go. We could try any position you'd like and I will love you long time. Oh and before I forget, bring your twin sister, she's also mighty hot.'"

Sure, goofy, but I have to take any chance to laugh just a little if I can. Have to.

The NICU

2005-04-11T00:28:00.000-07:00

It's been a day from hell.

Last night I discovered that the only thing worse than a baby who is fighting and screaming at each feeding is a baby who doesn't want to fight at all. He was so sleepy that he refused to rouse for feedings. We would try to wake him, but he didn't want to wake. If he did, he would eat and then spit it back up.

At 3am I woke up Matt because I was exhausted and Jack finally had a wet diaper. Unfortunately it looked like there was blood in the diaper, which I've now learned is colored crystals which come from very concentrated urine. Jack refused to eat at all at 3. I fell asleep on the couch, waking each hour to check on him and having some very strange dreams about a meteor shower and thinking Jack would be okay because I saw an older boy in my dream.

At 5am, he ate only 1/2 oz and there was another spot of color in his otherwise bone dry diaper.

At 6am, it seemed like every dog in the neighborhood was barking. It woke me up. I walked out in the backyard with our non-barking dog to check out the commotion. Around the corner, in our completely fenced yard, came a big black dog. I thought I was dreaming again so I came back inside and told Matt. Since I was up, I pumped, and then since I was awake and the sun was starting to rise, I called our pediatrician. I told him about our baby who basically slept through the night, the 'blood' in his diaper, his refusal to eat. Our original plan had been to get Jack another blood test at the hospital and then meet the pediatrician at his office. The new plan was for us to go immediately to the emergency room at the Children's Hospital.

The rest of the day is pretty blurry, filled with long waits and scary times. I believed that we would be going there for a day of Jack sunning himself under the billi lights, but I was wrong.

First was the IV and blood tests. The IV is because he was obviously dehydrated. Unfortunately they blew his first vein so they had to do it twice. (Bastards.) The blood test was to check out his billi (which was 22, so now over the bad 20 level) and rule out many other things.

Second was the abdominal X-rays to rule out other problems. Before the results came back, our pediatrician came in (on a Sunday, in this San Fran area Children's hospital 45 minutes away from his office, I love him) and talked to us more about jaundice and the lights and the things we were ruling out. Then the results came back and he explained that Jack had an obstruction somewhere. They could see that his stomach and intestines were filled with stool and air to an extreme level. It was the inability to poop that was causing his jaundice to keep increasing, so the yellow skin and refusal to latch were symptoms and not the real problems. That's when they asked me how long his belly had been so big and hard and I shook my head and gasped for words since I had no idea. The surgeon came in and checked him out and many ideas were discussed as to different types of obstructions, including a twist in his intestine.

Third was the contrast X-rays where they first had him drink a dye while we watched it go down through the first part of his system. Then they did a barium enema where they put it up his little rectum and watch the dye up the second half. From that they could see that he had serious problems with his colon and lower half. It don't like it when the experienced radiologist talks about how he's never seen a colon like this before, etc etc. It was too full, probably due to either a thick meconium or due to Hirschsprung's disease. (Let's call this HD to save me from typing so much.) HD is a congenital defect which in my layman's understanding means that he would not have the right cells in his colon or lower intestine to contract correctly, so he would not be able to expel poop. I have much googling I'll have to do on this subject, but I've done none so far.

So then he was admitted to the NICU, which has to be one of the most scariest places on the planet for a parent, and probably the safest place for a baby. A team surrounded him and started inserting all sorts of wires and tubes. We were lucky in that his umbilical cord hadn't healed too much so they could put tubes in there. As the team was working on him, they took me off to get me to pump and show me their system for pumping and freezing. During this, they also told us that he would most likely have surgery that day to relieve his extended belly. There was a danger of his intestines bursting and causing bad infection and other problems. I rebelled against this, asking about medical resolutions and they assured me that there weren't any. In the meantime we had to wait for the surgeon who was on another case. Under the stress, I couldn't pump much, so my tiny bottles seemed so empty and the nurse questioned whether I was really done.

The impression I had gotten of the same surgeon in the ED was that he had no bedside manner and left me rather cold and untrusting. Maybe it was when he put the q-tip up my son's bottom to check for an opening, or maybe it was his thick accent and poor explanation of possibilities. My brother (a surgeon) has always told me that if you ask for a treatment option from a surgeon, expect it to be surgery. Surgeons like to do surgery. Up in the NICU, this surgeon told the nurses and neonatologist that they would be trying some non-surgical options first. My opinion of him had immediately changed. I finally felt like things might stop spinning.

So they then worked on relieving his bowels by a catheter and basically sucking some out, and some fluid washed in every two hours. The surgeon did the first part, even returning the solution to the nurse to be warmed so that he wouldn't have to put it in cold. His methods were slow and slothlike and I appreciated his attentiveness to my baby. Jack finally started sunbathing under those billi lights. He had a little morphine because he is a little fighter, but right now he's resting comfortably without it. I've been pumping every three hours and freezing it in the NICU freezer.

The surgeon describes Jack as having a lazy colon. It is either lazy because it finds the meconium too sticky and was unable to pass it causing an obstruction and the resulting traffic jam up his intestines and into his stomach. This would be the best case scenario. This would mean that the flushing out of his system would be his general cure. They find this idea to be highly unlikely, but my hopes are deeply tied to it.

The second option is the HD (see the definition above). In the morning they will do more X-rays and sometime probably tomorrow they will do a biopsy to find out if he has the necessary cells to expel poop or not. If not, then he will be diagnosed with HD. They will then do surgery to route the healthy part of his intestine to outside his body where he will get a colostomy bag. He will have this about 9 months until they do another surgery or two to remove the diseased intestine/colon and route the healthy intestine to his little butthole. Then he should have parts that work like the rest of us.

Jack is doing fine tonight, sleeping in the NICU under the billi lights with his cool eye protectors, and not so cool tubes including the flushing of his intestines. He likes to suck on the tube in his mouth/throat as if it's a pacifier. He's off the morphine and just sleeping.

Pazel is not doing so fine. I'm exhausted and drained. It's been a long several days and today was pretty bad. I don't care how many nurses or doctors tell me that my baby will be fine, I don't like to see him go through all these tests or to hear he'll have surgery. I'm sure there are many worser things, but this is my sweet baby and it's all I can do not to grab him and go running from the hospital. They don't know what it is to look at my baby being worked on, watching him cry, and feeling my milk let down with my body's own desire to ease his pain. And they have no idea how hard it was to pull myself away from his bedside tonight just an hour and a half ago, to put his carseat and diaper bag back in the van, and drive home without him. I've learned something today and that was that the only one who can truly understand every bit of my pain is my husband because he loves Jack just as deeply and intensely as I do. For all these 12 years of marriage, today when he held me and when he also broke down, our souls were only one with one wish and one cry. I know it sounds really sappy, please forgive me, but I swear it's true.

So I'm going to get up in just a few hours to shower and have breakfast with our daughter before heading back to the hospital. Janie has been told that her new baby brother is sick and in the hospital, but will be getting better and be home soon. I've got her covered by family for as long as it takes, but there really is no substitute for us and that's hard. Already this week because of the birth and hospital stay, then the nights up with the battling baby, she's told me that she misses me and wants me. Right now she's sleeping peacefully in our bed and I'm about to climb in next to her. I miss her just as much.

I have no idea what the next few days will hold. I continue to hope that he's just got a lazy little butt with super sticky meconium and not HD. Then we can get him home sooner, with nothing else invasive and all his parts working. I hope that some day I can tease him endlessly about all the attention his little colon got and tell all his friends about the number of things that went up his rear in one day. Right now, I'll settle for a few hours of sleep and no circling thoughts. You know, the kind that keep you up and make you see black dogs.

Battle of the Breast

2005-04-09T22:53:00.000-07:00

I'm sorry I've been absent. It's been a rough few days.

Jack is not eating and it has me upset. The first few days in the hospital, he just wanted to sleep. He didn't want to eat at all. The pediatrician wasn't worried and I wasn't too much either. I had the baby nurses all over me, grabbing my nipple, forcing it into his mouth, undressing him and wiping him with cold towels trying to get him irritated enough to suck. But he wouldn't latch, and if he did he would take only a suck or two then stop and thrust his tongue to come off. It became a challenge among the nurses to see who could get him to nurse. One wasn't even assigned but came in because she said she'd never failed... and she did. She couldn't believe it.

We came home Thursday afternoon and since then he's had only one real wet diaper. We've changed him more times which have been damp at best but not wet. No dirty ones. None. The hospital said he had two which were the black meconium, but I didn't see them. I have my doubts about them too, but what a strange thing that would be to fib about so I guess it must be true.

At night, he sleeps maybe 15 minutes at a time at most. The rest of the time he is crying. I have milk, with the swollen engorgement and now chapped nipples. I will be dripping milk while trying to get him to latch. He cries and fights and turns his head and is just relentless. Once I get him to finally latch, it's about 3 sucks then pushes off and screams. Repeat, repeat, repeat. I burp him frequently to take breaks between the screaming. He will calm while I hold him vertical, and maybe take a mini nap, but then he starts crying again. Back to the breast and the battle. Lather rinse repeat.

During the day, he sleeps, but of course he's always held during the day. I try to wake him to feed every two hours, which then starts the crying cycle again until he cries himself back asleep. He cries when he's hungry, cries during the feeding, and eventually cries himself into exhaustion.

And it's killing me. I feel like an immense failure. With Janie, everything was so easy. She rarely cried. If she did, I would just feed her, burp her or change her and she'd immediately stop. She took to breastfeeding really easily and would eat until she would fall asleep. He cries more in one night than she did her whole first year.

He's very jaundice, which is normal except that it usually goes away as the baby nurses and poos. Since he's not eating much and hasn't made any dirties, he's just getting worse. Both yesterday and today we had to take him back into the hospital for blood tests to check his bilirubin levels to see how jaundiced he is. Each day his level is worsening, getting closer to that magic 20 where it is supposed to be especially bad. Today it was 18.7. We've got to bring him back in tomorrow. I'm not sure what will happen at 20, hopefully just the billi lights, but I think the jaundice is more of a result of the feeding issue than the main issue.

I love my pediatrician. He called me today about the results and to see how last night was. He then called again tonight to see how he's doing. He asked me to bring him into his office tomorrow morning (Sunday) when he's done with rounds to weigh him and check him out. At his appointment yesterday he weighed 8lbs 5oz, down a whole pound. Usually a baby loses 5-10% in the first few days which is then easily gained back. Losing a whole pound is more than 10%, and I suspect he's still losing.

It's all very scary and frustrating. Of course my emotions are already on edge being post partum, but this feeding thing has got me. It is the mother who breastfeeds and so I am really feeling all this. I am also the only one up with him all night. What can Matt really do since he can't breastfeed him and that's mainly what our time is spent on? It's amazing because he will sleep and snore through all of the screaming, which bores down to my very soul. During the day Matt will hold him, but with our daughter his job was always diaper duty and since Jack's not wetting or soiling, he's kind of been out of a job.

This afternoon at the pediatrician's request, I pumped. I could only get about 2 1/2 oz which to me means that I'm starting to dry up. We battled with him with the bottle this evening. He does take it better than the breast, but it's not easy. He fights and cries and chokes and has to be constantly burped which he does loudly and has several for just a few swallows. It makes me feel better because you can see that he's eating, but makes me feel worse because I'm giving him a bottle instead of a breast. (And at one point while I was doing this the cooking show actually started talking about breastfeeding and how simple and natural and perfect it was while showing these babies contentedly latching and feeding and being held and lightly touched by their mothers and I wanted to throw my shoe at the TV.) The pediatrician recommended that I continue the bottle tonight, so I pumped again, got another 2 1/2 oz, which he's had 1 oz already, although it took awhile. I'm willing to try. It's hard to concede, to not give him the breast, but I'll do whatever it takes. Actually, it makes me think of Julie at A Little Pregnant although I can't make this seem witty in any way. Just hard, very very hard.

So wish me luck tonight as I need it. I need all reserves of my patience and to give up my desires for how things should be. They just aren't.

And I wouldn't give him up for the world. He really is beautiful. Sure, the sound of his crying is not music to my ears right now. The birds aren't singing to me in the morning and my general attitude is pretty down. But during the day, when he's peacefully sleeping, I look down at his sweet face and I can't get enough. He really is beautiful.

I'll have to post his birth story later. Forgive me if my posting are sporadic. I am either battling with him over the feedings or I'm just rocking with him and enjoying a quiet moment with him. I know that as long as he is eating something he will be okay. There are worser things, this is just what we've got to face today. I wish it were different and I remind myself that it will get better. It will. I don't see any college kids who cry and choke on their pizza.

Thank you all for the congratulations. I really, really, really appreciate your kind words right now. It really has helped, especially because I've felt so sad and horrible today.

Jack Henry

2005-04-08T23:25:00.000-07:00

I only have a minute. I'll have to send you the long version tomorrow.

I'm the proud mother of Jack Henry, born Monday 4/4/05 at 1:05 pm from a planned c-section birth. At birth he weighed 9lbs 5oz and was (probably still is) 21 3/4 inches long. He's a big baby comparatively speaking, but to me he looks just tiny. He also looks just like Janie. Matter of fact, at certain times I'm certain I'm holding Janie. He's got the faintest amount of brown hair, and the darkest blue eyes that will probably change brown. His eyebrows are nearly invisible. His skin is flawless, although he's pretty yellow (jaundice).

Is it the 4th already?

2005-04-04T00:27:00.000-07:00

It stormed tonight. Thunder, lightning, and a sudden down pour. It seemed fitting. Let the skies open up and welcome this baby. I've always loved a good storm.

He keeps kicking me and moving around. He's even had the hiccups twice tonight. I think he's telling me to stop worrying so much. He's alive and he's real and tomorrow is his birthday. Can you believe it? Because I am having a hard time.

Obviously I can't sleep. Must I say that there's just too much on my mind? I've having a baby tomorrow. My second and my last. Yep, my tubes will be tied and no more babies for me. Tonight is my last night of sleeping pregnant, and it's a little sad. I'm tired of being huge, but I'll miss his movements. Sure, sometimes he plants his feet on one side of my pelvis and tries to push his head out the top of my belly, but I understand he's doing it just because he's cramped and trying to stretch out his little home. I could imagine myself doing the same.

I wish I felt better in terms of my cough and congestion. At this point, it's been like this for 4 months, so delaying this birth won't change anything. The pulmonologist and my GP think birth will make me feel better. Better is better.

Matt returned home with no TV, pretty much as I had suspected. He was frustrated and promised he would get one while I'm in the hospital, should I let him escape for a few hours. It was like I said, he set his expectations so high that nothing was good enough. It wasn't this or it wasn't that. He says that he is having a big final tomorrow and is not prepared. I think running around looking at TVs was a good distraction from all this. I sent him to bed early because I want him to be well rested to take good care of me. Also, he gets grumpy if he doesn't sleep. It's worse if he doesn't eat. He's a simple guy really. Really easy to read and figure out.

A boy. Can I say that I still don't believe it? I'm going to have to see his goodies to believe it. Actually, first I'll have to hear him cry, then count his fingers, then check out his goods. And then hopefully I can gaze into his eyes and a name will come. Jack Henry or Henry Michael or .... Henry is a sweet name, I think it would be so cute for a little boy. Henry would be a good name if he was soulful, but Jack would be a good name if he was more outgoing. I'm going to have to see him, to look in his eyes and see what his name is.

Thank you all for your words of luck and hope. It means a lot to me. I'm afraid that now that I'm about to have one of the most exciting times of my life I won't be able to immediately share it with you. Tune in later this week and I'll tell you the real story.

Speaking of luck, today I got about 9 phone calls from family. How are you feeling? Are you excited? Do you have a name yet? Everyone was suprised when I went out shopping. How can you go out? Ummm, I'm the same as yesterday. I'm not in labor. And it takes my mind off of things. (I bought presents for Jamie, thank you for the suggestions.) It's a strange position to be in, to know that tomorrow is the day for sure. It's not a due date which is always just a shot in the dark and I don't need any signs. It just is. So very modern.

So I will wish you all a good night. Think of me at 12:15 pacific time. I'm sure I'll be crying but it will be in the best way possible. When Janie was born, Matt even shed a tear or two. I'm looking forward to that again too.

I'm having a baby tomorrow

2005-04-03T12:14:00.000-07:00

I'm having a baby tomorrow.

I don't believe it. I don't care how big I am, how much he moves around, or my name on the surgery schedule. I'll believe it when I see it. Just last night we put the car seat in the van and I packed my bag for the hospital. And we still don't have a name for this poor kid.

I can't really think about what it will be like when we finally have him. It's too emotional, too raw. Instead I spend my time concentrating on the details. Do I have the essentials I need to bring him home? Are there meals set up for Janie? How is my work ever going to survive without me? Actually I don't think about that last one too much.

Matt has been wonderful. He's nervous. Last night I asked him what he would do if I died on the table and he refused to answer. I made him promise that he won't move the kids to Nowhere Nevada by his parents. It's not that I don' t like his parents, but the mindset there is so incredibly different that I would have to haunt him. I told him that if I died he should move back to Arizona where he can buy a nice house and my best friend would help him in raising the kids. In truth, I can't die because I need to raise these kids. No one else would be good enough. Not that I'm Mary Poppins, but I like my own brand of moderation.

Right now he's runnning around trying to buy a TV for our bedroom for me to watch while I recover. He said that he feels like it's Christmas eve and he's got to find the doll all the stores are out of before they close and it's too late. I'm not too particular about the TV and would be happy with something inexpensive since there's nothing worth watching on anyways, but he wants it to be special. He's trying to find some HDTV super spindicular plasma flat thing to go on the wall in our bedroom. He's set the bar so high that he's created enormous pressure on himself. I only worry about the price tag and that he ends up buying nothing because there isn't one that fits his criteria.

I had a strange dream last night. I don't remember most of it, but the end when I was playing with a little girl with down's syndrome who was my daughter's age. Her blond hair was cut in a chin length bob. I know it must be my best friend's baby daughter, but I'm not sure why I was dreaming of her. Was it some random synopse or was my brain trying to tell me that all would be okay? Even when it seems like something bad has happened, it ends up not to be the end of the world. Maybe. But I don't think the mind can truly prepare the heart for anything so important.

Janie is loving her time with my mother right now. They stayed up late talking and Janie told her that while I'm at the hospital they could eat ice cream for breakfast and cake for lunch (but macaroni and cheese is good for dinner). They're playing McDonald's in her playhouse in the backyard. My mother told me that she tried talking to Janie about the new baby last night but Janie didn't want to talk about it. Janie's very excited talking to me about it, but I don't think she wants to share her Grandma with the baby.

There's much I've got to do today. I'll try to write more tonight or tomorrow morning. There's so much going through my mind.

More Janie Talk

2005-04-01T10:31:00.000-08:00

I'm sorry about the title yesterday. I didn't mean to scare anyone. I didn't even think about it.

I love your ideas of getting her a present from the baby. I'm going to go shopping either today or tomorrow and take care of that. It's now top of my list. I also love the hostess idea.

My mother is coming tomorrow to stay a week and help with Janie. Janie loves her because she comes just to play with her. She doesn't have to deal with laundry, cooking dinner, work, studying, cleaning house, or any of that mundane stuff. She also brings presents. Matt is planning on bringing my mother's car in to get serviced while she's here as a thank you gift. It sounds strange, but if you knew my mother you'd know that she never gets her car serviced and it probably hasn't had the oil changed in a year.

This week at school has been hard on Janie. Most of the kids are on spring break, including her beloved Armand and her other close friends. The first day she told me that she played with the new kid because the other kids wouldn't play with her. The next two days she told me that she played on her own because the new kid was being mean and the other kids wouldn't play with her. Last night she told me that she made friends with Amanda and Lea. She said that she wanted to go to school everyday even Saturday and Sunday because she wanted to play with them. She was so excited about going to school today, and brought stickers to share with them.

I think I've shared before that Janie is kind of a shy girl. She's very talkative and friendly when she knows you, but if she doesn't she probably won't say a word. When she makes friends, they're very tight, but she's not very good on making new friends.

Every day she would tell me that she didn't have someone to play with or that kids don't want to play with her I get upset. I don't show it to her, but inside I'm hurting for her. We try role playing on making introductions or inviting other kids to play or asking other kids to play, but she tells me that she's afraid they'll say no. Ouch.

So mix a rough week at school and the new baby coming on Monday and I have a lot of concerns for her. She's not had any hard feelings towards the baby (yet), but he's not that real yet either. I tell her that he likes to hear her voice and that he can't wait to meet her. I tell her that they will be brother and sister forever. I tell her that she will always be my girl and my first and my baby no matter how old she is. And I try to spend more time hugging her, talking with her, and just hanging out with her. But I know I can't completely protect her from how she might feel.

It's a luxury to have this problem, a second baby coming. One of the reasons Janie has been such a star is because she took so long to be conceived (3 years and 3rd IUI), and because we assumed that she could very well be our only child. She was the first grandchild in 12 years on both sides of the family. I don't know if there is a child more revered and spoiled than that of an infertile couple.

I'm going to take your advice and work on putting together some special things for Janie from the baby and special things she can do. She is still my baby. I can't imagine loving another child as much as I love her. It seems impossible. I've heard it can happen. I'm looking forward to finding out.

---

p.s. I had my last class last night for a few weeks. Suddenly everyone wants to talk to me. Are you excited? Are you nervous? How are you feeling? I'm the reluctant celebrity. Especially when I have to pee.

Misc

2005-03-31T11:21:00.000-08:00

Last OB appointment was today. It went well enough. No dilation and cervix is tight. So if we weren't having a c-section on Monday who knows when this baby would come out.

I noticed last night that one of my favorite things is slipping into cool sheets. Ohhhh. Then of course Matt starts to snore and I'm nudging him. He apologizes, moves around, then starts snoring again. I nudge again and tell him to roll over. He apologizes but doesn't roll over. Play this over and over again until he eventually does roll over or I go out to the couch. In either case I'm no longer relaxed and the sheets are now heated up.

As it gets closer to this baby being born, instead of getting excited (although I am), I worry more about Janie. She's excited about the baby being born and I know she'll be a good big sister. But her whole world is about to change. She'll no longer be the center of attention. She's been our only child for 4 1/2 years. She's used to being the star not only with us but with the relatives. Last night we opened a package from one of my sisters and in it was two boxes. Janie assumed one was for her and one for the baby, but both were for baby. I tried telling her that it was because they were birthday presents for the baby, but she was disappointed. After the baby is born, everyone will come to see him. And I will be recovering and spending my time caring for him. So I worry about her. How does this go?

Distracted

2005-03-30T13:44:00.000-08:00

I'm still sick. I think this cold is doing a really good job of distracting me from my deadline. Monday. The baby is coming Monday. This Monday.

I saw my GP yesterday because I felt very short of breath. I brought my bag of medicines. He basically told me that I have pregnancy induced asthma. I need to take Flovent twice a day, Albuterol as needed, Flonase when stuffy, and my Promethazine cough syrup nightly. (And I asked but Robitussin is bad and I should avoid it.) I've given up caffeine and alcohol completely, yet I'm supposed to take all these meds? His answer was yes. The message I got was that I've been sufferring since early December with this cough because I keep getting prescriptions but not taking them thinking I'm doing what's best for my baby. It's all my fault. He didn't say that exactly, but he did.

So last night I did as I was told and took all the meds. I slept like a rock for the first time in forever. I got up this morning with Janie, sat on the couch, and soon was asleep. She was a good girl, ate her breakfast and got herself dressed. I woke up (barely), got her hair done, made her lunch, dressed myself and took her to school. I felt like I was still drugged and so incredibly drowsy. Every action was incredibly difficult. I couldn't wait to drop her off so I could fall asleep on the couch again.

So sleeping is good, but feeling drugged is very, very bad. And my baby has been quiet today as he is the day after whenever I take that cough syrup. I hate that. Absolutely.

So maybe this sickness is my own fault for not taking my meds, but it's better if I am the sick one instead of him. I don't know if I'll take the cough medicine again tonight. I'll take the other meds, but the cough syrup is hard. Too much guilt.

See, my sickness is a good distraction. Monday. Wow.

More Complaining

2005-03-29T10:05:00.000-08:00

My cold is killing me.

I cough so violently and pee a little each time. My nose is a faucet. I sneeze. My eyes water. And my throat is sore. I'm sleeping only in 2 hour increments. Nothing revolutionary, but I'm tired of it and need to get better before my c-section on Monday.

I realized today that the smell I have associated with old people is the smell of urine. I only know this because of my incontinence with each cough. It leads me to pee every few minutes just to keep my bladder empty to try to prevent it.

Tonight I have class. I don't know how I'll do it yet. Parking is too far, and I'm coughing too much. But I have to do it because I need to save my days off for after the baby is born. I just don't have the energy.

Finally

2005-03-28T12:32:00.000-08:00

I just got the call. Yes, I had to wait the weekend afterall.

Baby's fine, just very big. He's healthy, although I'll have to see him to believe it. They wouldn't give me an estimate of the weight, but did say that on date date of the ultrasound, when I should have been 37 weeks and 4 days, the baby measured 40 weeks and 3 days. Because he's from IVF we know his actual due date is correct, so he's just a big one.

Nothing about ABS or anything else wrong, just that with him being breech and large and my past c-section, he's a c-section all the way. One week from today.

My weekend was cruddy because I'm sick. I believe that I have caught my third cold this trimester and my cough is much worse. I'm having major problems breathing. I should be working or doing something today but I'm not. Well, I am doing one thing and that's putting his swing together. There's so much more that I could be doing but just can't.

Janie was the cutest thing yesterday for Easter. The kid who can't be roused before 7:30 got up at 6am to see what the bunny brought her. She got to eat candy and I got to dress her up in her new dress, gloves and hat. She is my little doll. Matt then took her to his aunt's for Easter and I stayed home because I was too sick. Easter alone. It wasn't that bad afterall. Janie had fun with an egg hunt, and then she re-hid the eggs and made the adults search for them. She encouraged me to feel better next Easter so I can look for eggs too.

Now I'm going to go blow my nose again and feel sorry for myself for being sick and debate with whether I should call my GP. My OB's office already told me today that I should deal with the GP and not them on my cough and cold.

I don't know if I could describe all the thoughts that went through my mind this weekend as I thought about the possibility of my baby having a birth defect. I knew I would love him no matter what, but I worried about him growing up and how the world would treat him. Of course I didn't tell Matt anything because we knew nothing and there's no need for him to suffer like me. And I only sufferred because I'm a crazy person who took the only thing she said during the ultrasound and tried to give meaning to it. Well, maybe that's not so crazy but it did give me more worry then I needed.

Thank you for checking on me. I feel much more relieved. Of course I wish I could breath too, but I'll go lay down and maybe order some hot and sour soup, I like it much better than chicken noodle.

Waiting for Results, Again.

2005-03-25T10:08:00.000-08:00

I hate waiting. I called my doctor's office and the receptionist tried telling me that it takes a week to get back ultrasound results. I don't think so honey. Not with this one.

My dog is feeling much better. She was able to pass the obstruction and she's on antibiotics for a UTI. Today she was back to playing with the cat.

My family has started their pool on my baby and my brother's baby who will be born about 3 weeks later. For his baby they all guess around 8 lbs and that she will have fuzzy blond or red hair. For mine, the guesses are around 9 lbs and stark bald. I think he'll be even bigger. But the damn doctor's office hasn't called me back yet......

Today Matt will be doing some paint touch ups and I should be working on my work project. Tomorrow is for cleaning house and decorating easter eggs. Sunday will be lunch and egg hunt with Matt's family. Monday is my little sister's PhD dissertation speech, which I'll go to but not understand a single word after her name. I wish I had something else to wear besides my dark black and blue skirt and sweater, but I'm not investing in maternity clothes at this point. It will be what it is.

Last night I had some weird dreams. I dreamt that Matt and I went away to this new school so that I could finish my education. We moved into this tiny apartment the size of a hotel room. I was to babysit for our neighbor but she kept coming up with excuses for not letting me hold her baby. I didn't look pregnant, but for some reason I knew that I was and that it was important for me to watch her baby so that later she would watch mine.

In my dream there was also this beautiful community of about 6 huge houses set in some rolling hills. These houses and this neighborhood has recurred in many of my dreams over the years. Sometimes I go into one, sometimes I find that there's ocean nearby, and sometimes I get in trouble for venturing through their streets. This time I noticed that three houses were behind a locked gate and three were not. I decided that I liked the ones that were not in the gated community the best. But all we were doing was driving up to do a U-turn. While we were doing it, someone, possibly Matt, dropped a ball out our truck window. I got out to pick it up and just looked up at the houses for awhile.

Then at about 2 I got up to pee, and about 4 Janie woke up crying. I went and climbed into bed with her. It's a little cramped between her, I and my belly, but we fit and I slept until 6. I don't think I've slept through the night in years. Between Janie waking up or Matt snoring, and now my middle of the night eliminations, I just can't sleep solidly.

So here I am, just waiting for the phone to ring. And I know that somewhere in their office are the results. Isn't it amazing that some people have so much control to make or break our days? All it takes is for someone to make my papers their priority for just a few minutes and I will be relieved of this wait. Yet, they are so used to having people's results and probably don't see the urgency in any of it. Why worry about these ones when there are new ones about to come in for someone else? I think that a waitress would put getting me a cold lemonade at a higher priority than a nurse or doctor getting me test results. It's all so backwards. What I really need is knowledge. Tell me what it says. It will only take a minute and it will relieve my anxiety. Sure I would like to know his weight, but what I'm really interested in is knowing he's okay.

Oh, and I plan to tell them that the u/s office had terrible equipment. Thinking back, I bet it was level I equipment and not level II because when we had an u/s with Janie a few days before she was born, we could make out all sorts of features.

Phone rang again and it wasn't them again.

There's a monster in my closet

2005-03-24T21:29:00.000-08:00

Google is a bad invention.

I'd say that the ultrasound was a bust. The ultrasonographer Helen kept the screen to herself so I couldn't see anything. She promised to let me see the baby at the end so I relented. Besides, I try so hard to be a good patient. Matt had a good view and so did the nurse, but not the person who has been lugging around this child. No.

She spent a long time looking at stuff at the lower hemisphere. She only said one word to the nurse during the whole thing and that was "ABS". I watched Matt's face during the ultrasound and I swear it looked like he was falling asleep. It confused the heck out of me since he was so excited going in. The silence was also deafening. After a while of laying flat on my back, I started to get really uncomfortable. My back started to hurt, I felt completely compressed and started to get feelings of claustraphobia. I wanted to get up and get some fresh air. The only thing that kept me laying there was the promise of seeing my baby at the end.

Then at the end she finally turned the screen to me. She told me that the age of the pregnancy makes it very hard to see anything. The bones make huge shadows so nothing is very reconizable except to her. She showed me the head, but it just looked like a giant circle and not a head. She also showed me the spine which was more recognizable seeing the spinal bones. At one pass I saw the heart beating, but it was while she was zipping over my belly talking about how hard it was to see anything. And it was hard, very foggy, very dense, full of just grey blobbies and I consider myself a pretty good reader of ultrasounds. She agreed that the baby was in breech position, but didn't give me any indication on size. She promised she would fax her report to my OB tonight so I could get news tomorrow, then sent us off.

So tonight I got googling trying to find what ABS means in ultrasound. Maybe it's the baby's position. Maybe it's some measurement. Maybe it's something about the location of the placenta. But all I can find is Amniotic Band Syndrome which looks very scary. I won't go into it but basically it would cause limb or digit amputations or deformities. And it's not genetic so it wouldn't have been in the amnio. And at the time of my ultrasound the baby could look perfect with all his digits and limbs but then the problem start sometime after.

And she was focused on the lower half by his limbs when she said this, and it's all she said. She certainly said nothing to us about any issues, but since she's not a doctor I don't think she can. She wouldn't even give us his weight estimate for goodness sake! She asked when my next appointment was and told me twice she'd be faxing it over today so I wouldn't have to wait the weekend.

I'm not panicking, but my mind isn't restful either. It's not something I can't handle, yet it's something I wouldn't want to.

Heck, let's just face it, I'm a worrier. I'm going to worry when there's nothing to worry about. And I will make up demons when none present themselves. I'm sure this baby is perfect with no such problems. I just wish I knew for sure. Tonight.

So tomorrow I have one goal and that's to call my OB's office and harrass them until I get the results back from today's ultrasound. And when I get it back and everything is fine, I will exhale again and then curse myself for googling.

Tick tock

2005-03-24T12:04:00.000-08:00

A little more than 2 hours before my ultrasound. You can't wipe the smile from my face. I was even in a good mood at my OB's office this morning, which is unusual since I've been whining and complaining at every visit lately. Then I told her that I want my tubes tied at delivery and she told me that I should have signed the consent 4 weeks before delivery. I was shocked. We decided to back date the consent. Whew, close one.

In the parking lot, the car next to mine parked within inches of my door. Maybe in my skinniest days I could have shimmied into my van, but the state that I'm in made it impossible. Mission impossible. I opened the back hatch, climbed over the back row, crawled through the middle row, then climbed over the center console into the driver's seat, but with my feet in the passenger seat. Move the seat back, move the steering wheel up, then drag one leg at a time over into the driver side. Voila! I'm in!

So now I'm home and counting down the minutes. I've got to see this kid. I've got to see that he's okay. Sure, I'm curious about his size, but it's more along the lines of making sure he has all his parts and they are all normal. Matt is hoping that if I see his face in the ultrasound I'll settle on a name. Yea, good luck.

Right now I'm looking at two names. This can still change, and may, but it's good to have it down to two. Jack or Henry. Some are hoping I'll just name him Jack Henry. Could happen.

Getting closer... c'mon clock!

Dog Days

2005-03-23T10:11:00.000-08:00

My doggy is sick. She was laying around, not even getting up to greet me when I'd return into the house. We took her to the vet and an x-ray shows that she ate a plastic grocery bag. She's at the vet's today and they'll either get her to throw it up, or she'll have to have surgery. My poor dog. Today I feel so alone without her laying by my feet.

When I brought her into the vet's office, some woman had two large dogs on a leash who jumped at my dog, barking, growling, snarling. I was walking in just thinking about the possibility of surgery when these out of control dogs tried to attack, scared me and made me scream. The woman didn't even apologize, just acted like it was somehow my fault for bringing my dog in. Look lady, if you can't control your dogs then bring them in one at a time. My dog is also large but you'll notice that she stays by my side and sits when I say sit once. If she jumped and tried to attack some 9 month pregnant woman and her sick dog, I would at least apologize.

I forgot to say that I'm on Spring Break this week. Sure, I'm still working, but no school. I flashed Matt last night in my own absurd version of Girls Gone Wile. I asked if I should go to Fort Lauderdale and dance all night, maybe that would start labor. Then again, maybe Snoop would see my naked belly and too dark humongous nipples and be stricken blind. F'shizzle.

A New Kind of Two Week Wait

2005-03-21T10:04:00.000-08:00

My c-section is two weeks from today. Two weeks. That's not that long at all. I think the regular two week wait is longer.

This weekend Matt finished painting the family room. He jokes that I get the nesting instinct so he has to work, but really I've been wanting this done for years and finally he's feeling the pressure. Nothing like planning on lots of visitors to get some home improvement projects finally finished.

I spread all my baby loot on the extra bed, but I haven't put it away yet. It was more of an inventory. I haven't washed the baby clothes yet nor taken tags off of anything. I have all the receipts saved too. Old habits are hard to break. Matter of fact, I still have my Lupron, pen and left-over repronex stored in the refrigerator. I promised Matt I will throw it out after the baby is born. (If someone needs it, please let me know.)

As I stand here, I still don't think it's real. These type of good things aren't normal, at least not in my world. It sounds strange that I say that when I do have Janie. Obviously there are good things. I just don't trust that pregnancy necessarily leads to a happy ending, or at least I don't anymore. Since Janie was born, my best friend has had three pregnancies. One baby was stillborn, one baby was born with Down's and serious heart problems, and one baby was born healthy. The scary thing is that she had no idea any of these things were going to happen and neither did her doctors. She's younger than I am too.

Today, I have an appointment with the nephrologist because of the continuing protein issue. I have a feeling that all that will happen is that she will order another 24 hour test for probably sometime after the birth. I think the doctors have all but concluded that the extra protein is just my kidneys suffering during this pregnancy which hopefully will resolve on its own. Thursday is my ultrasound because of size. I wish this would have been done two weeks ago when I was really anxious.

I have also come to the conclusion that I will end this blog after the baby is born. I'll still read and respond to other blogs, but knowing what I know, I don't know how I'll find time to maintain it. Plus, right now I've been feeling kind of like the lone tree falling in the forest. Do I make a sound? I don't know. Of course I will tell you all about the birth, but I can see myself slipping back into my nonblogging self after that. Motherhood to me is something I've been doing and I know. I may not be the best at it, but it holds more certainties for me than fertility or pregnancy ever could. I will have my tubes tied during the birth and end all of this cycling and uncertainty. I look forward to having that whole phase of my life behind me.

In the meantime, there is much to do. First of all I've got one big work project that has to be completed before the baby is born. Second, I've got to get my family room back in order now that the painting is complete. Third, I've got to finally get it together enough to remove the tags and wash the baby things. I've got to accept that this creature hiccuping in my belly may be born and be fine afterall. Not washing the baby things is magical thinking, like giving in to believing will make something bad happen. Oh the rational mind versus the fears of the heart in a fight to the finish.

Do you know what I wish? I wish I could write like like Tertia, or Grrl, or Julia, or Jo. I swear there are more interesting things going on in my mind than I can express in written words. I wish I could share with you the feeling of him moving around inside me, or the way my heart sings when my daughter talks about all she's going to do with this baby. And I'd tell you how this blog saved me when I was lonely and scared going through IVF without my best friend to talk to because she was dealing with her own issues at the time (newborn with disabilities). I needed a friend and through this blog I've found several women who understood. With my family and my coworkers, and sometimes even my husband, I would smile and pretend that I had everything under control. IVF, yea we're doing it, but it's just something we're trying. In reality it was more like, IVF, OMG what if it doesn't work. Then what?

But I didn't have to find out and in that way I do feel extremely lucky. I'll take my swollen fingers, sore back, cramped lungs, and general overloaded heaviness any day over what's behind door number 2. I know that many women before me and after me have had to venture through that door. I've watched them walk through, and they've described how they've felt on the other side, but I haven't had to go there. I admire them, because they keep going. Maybe another IVF or another, or maybe adoption or surrogacy. They've faced my fears and lived. I can't help but be in awe.

And what I want is for every woman to go through the two week wait I'm now in. The kind full of preparation and excitement instead of hold-your-breath kind of worry. I want them to complain about pregnancy and having nothing to wear instead of dealing with home studies or waiting for the next many months for another chance. I could sing "I'd like to teach the world to sing, in perfect harmony. I'd like to buy the world a coke, and keep it company" but that's a little too kumbaya for my taste.

So to my friends, I make this toast. "May we all get more than we deserve." Cheers.

Chunky Monkey

2005-03-17T12:24:00.000-08:00

Regular OB appointment today. I'll keep it short because it's nothing you haven't heard before. The baby is breech, which wasn't a surprise to me since all my kicks are at 6:00 and there's a huge head-like bump at 12:00. And, she ordered an ultrasound (finally!) because I'm measuring ahead of dates (not for another week). Actually, I think I've been measuring ahead of dates for awhile, but her nurses always put down my number of weeks according to the 4/6 due date per LMP, and not my 4/12 due date per IVF. Even with that I've been ahead 1/2 week on size, but I think this week my doctor finally figured out that I'm really measuring 1 1/2 weeks ahead. So now I'm narrowing down his name to either Bubba or Chunky Monkey (after a very yummy ice cream).

On other news my father told me he may be taking over raising his two youngest kids. One is in high school and the other is in elementary school. His ex (#3) called and said that she wants to move out of state to get married. Since he doesn't want her to move the kids, she said he could have them. They're now negotiating the price of her house so that after his divorce from #4 he could buy it and move in instead of moving the kids.

Meanwhile, the kids have no idea. She hasn't told them anything. They haven't met the guy she's going to marry, much less told them that she will be marrying or that my Dad will be raising them. Nice, huh?

I don't get it. What happens that some parents just decide that they don't have to raise their kids? It happens all the time, especially with men, but women do it too. When my youngest sister was 15 my mother sent out-of-state to me to raise. My mother is now raising my oldest sister's high schooler, mainly because she gets in the way of my sister's social life. My father has left and rarely visited his kids every time he got divorced from their mother.

And I just don't get it. I can't imagine giving up Janie for anything or at any age. Maybe it's easier to say this since she's only 4, but I can't imagine my love for her changing or lessening as she ages. It's hard enough to send her to preschool or to a relative's for the weekend, much less just walking away to live my own life.

And this particular stepmonster (not a hit to all stepmothers but particular to her as this was one of the truly evil ones) surprises me because she really put herself out there as the perfect mother. She coslept with her son until he was at least 6, and bf him until almost 2. No daycare, no nanny, she wouldn't let anyone else watch him but her. And now, when he's only I think 9 years old, she's going to leave him to be with a guy?

Oh readers, why is the world so upside down?

Blah blah blah, I'm huge, blah blah blah

2005-03-14T11:33:00.000-08:00

Last night on The Simpsons one of Marge's sisters went through International Adoption. There was one point during a commercial where I was glued to my seat and very anxious thinking that if they didn't end this one right I would stop all my years of watching this show. Thankfully they gave me my happy ending. Now if only all adoption journeys could be wrapped up between commercials.

Yesterday I let Matt measure my belly. I told him it was 46 inches just a few weeks ago. He disagreed, and sure enough, its now 50 1/2 inches around. I could write all my usual stuff about how uncomfortable I am, but I think you know.

While shopping at Lowes this weekend, a few different things happened. First, as I was pushing Janie in the cart, I hit a bump, stopping the cart, but I kept going. So I hit my stomach on it pretty good. I thought I would get a good bruise, but not even a red mark. My mind was then sidetracked thinking about his crushed hiney. If he comes out with so much as a dimple on his butt I will blame myself for not paying better attention as I was walking.

Second, as I was shopping for curtains for Janie's playhouse, an employee approaches me very moth-like.
You must be having twins.
No, I'm just big.
But you must be.
No.
When are you due?
Very soon. This is my last month.
But you haven't dropped. Shouldn't your belly have dropped if you're getting close?
I never did with my first either.
I think it's twins. It must be. It has to be.
No, but thank you.

Do I have any posts which are not about how big I am? Not many. I try, but not many.

Working Mother Dilemma

2005-03-10T14:16:00.000-08:00

Janie quote of the day... "And guess what Mom. I haven't picked my nose all day."

I've been kind of confused lately because I've started to doubt what I'm planning. I have been going through grad school with the intention of having this great degree and becoming a powerful mucky muck instead of someone who does her work from the dining room table in jeans and a t-shirt. I want to make the decisions instead of just giving information to those who do. And when I graduate, if I stay in my same company, I'll have a very good chance of getting such a position. All along that has been what I've wanted. Matter of fact, when I was a kid, playing office was my favorite game. I had a desk, manual typewriter, name plate, handmade business cards, and toy computer. Before I ever became a teenager I had read How to Dress for Success cover to cover more than once. I wanted to be scary smart, make changes, to have power, to be important. And money doesn't hurt either.

So I'm getting closer to this as I should graduate a year from May. I spoke to my boss, and she's fine about me working part time next school year so that I could get myself working back in Arizona and in an office right after graduation. She mentioned how much they love me and want me back and how she'd help me in getting a good position. So I should be happy, right?

That night, during one of my foggy stumbling naked trips to pee, I had a thought. What am I going to do with a high powered career and two kids? Not just one who will be in elementary school, but one who will be only one year old? How do I do this? Is it wrong? My mind started racing and soon I was wide awake on the couch, trying to let some stupid 3am tv show ease my mind back into lala land so I could rest.

Working at home, I've been able to get Janie to preschool at 9, and pick her up whenever. I can volunteer easily and have her here with me when she's sick. When Matt gets called out of town for weeks, I take care of it. When I travel out of town for work, I arrange to bring her with me or for family to watch her. I handle all childcare issues. It's not that Matt doesn' t help out, he does and he watches her quite often like when I'm in school. When I have this baby he'll be watching the two of them alone and he's not at all worried (and maybe he should be). I'd like to think that things are split 50/50 just like the magazines say we should do it, but let's face it, we've come a long way baby but we're still carrying more responsibility for the children and the house than our husbands. Case in point, when Matt and I got into our last argument over the messy house, he complained that I had to hire someone to do my job, i.e. clean the house. (Hmmm Matt, let's see what's wrong with that statement. First, the house is not my job but ours, and secondly isn't hiring someone a way to try to fix this problem of having a messy house? I am, afterall, only in my last month of pregnancy while working full time while going to grad school part time while raising a child. But I digress.)

Point is, I think all of this will get much harder once I start working in a real office again. I would have to either hire someone to be in my home, or drop off my kids in the morning somewhere. Somewhere, someone... I'm not comfortable with these. And it will all be on my shoulders, for me to figure out, plan and feel guilty about.

I guess I could work at home longer. But I've been doing it for 4+ years and I'm going stir crazy. I miss people and dressing up and my office and meetings in person. I hate being in the house all day every day. If it weren't for school I wouldn't have made it this long. Plus, my work has been putting up with me telecommuting only because I will eventually graduate and hopefully move back. They see an end and so they're willing to let me do this. Otherwise, there's no one else doing this. Trust me.

Could I beg for flexible hours or a flexible schedule? Maybe, but they don't work well for the female executive trying to succeed. I could very well end up on the Mommy track, which is short, frustrating, and not very well paid. Matter of fact, I could lose my job altogether if I don't show enough committment. Why work so hard all these years preparing to do a job and then only do it part way?

Pazel, isn't this what you've been working for all along?

I thought that having my baby while I was in school would be ideal. I could be with him while I still worked at home. Sadly, it's not going to happen until my last year and would have been much better my first year, but that's infertility for you.

I don't regret this pregnancy or baby or anything. I guess I'm just cursing infertility once again for putting this off until the last moment. And cursing the role of women for having such a large burden as to childcare. I mean, no one ever asks a man if he's going to keep working after he has a baby. And I'm cursing myself for not having an answer. How come it has to be either or and not both? How do women make this work? And will I hate myself for it? Am I never happy?

Please don't bash me for wanting to work outside the home, I'm looking more for different ideas or solutions or how to make it work.

How can a mother make it work working outside the home?

Human Snow Globe

2005-03-04T08:22:00.000-08:00

I love you guys. Can I send around a pitcher of something blended, frozen and possibly alcoholic (for those who can)? Thank you so much for caring about me. I'm fine. I'm the same mess, but I'm fine.

Wednesday was a horrible day. I felt weak and tired all day. I was constantly back and forth with deciding to do something or not do something, waiting for my doctor's office to call me back. I felt better that evening but it had been a long day.

On Thursday my doctor's office calls me back about a half hour before my appointment. I was feeling better, but couldn't believe they waited so long.

Matt came with me to my doctor's appointment so he finally got to meet my OB. My shoulder was better (think it was computer and laying-on-my-side related), I had some energy, and not feeling sick anymore. She thought I had a one day flu. I don't think so, but it's hard to argue when I'm better (relatively so). My blood pressure is still low (102/something), so preeclampsia is still out. She referred me to a nephrologist to see about the protein (still high).

I begged her for an ultrasound, but she didn't go for it. She said there was no medical reason for it. You should have heard my arguments, which gave Matt a good chuckle but my OB wouldn't budge. ("But I have large babies!" "Well Pazel, you're having a c-section and I can take any size baby out that opening.") Then we set the date for the c-section. While the rest of her office believes April 6th is my due date (from LMP), my doctor knows it's April 12th because of the IVF. (Damn!) I wanted it at 38 weeks, she's a firm believer in 39 weeks. After more begging and not getting anywhere, she set it for Monday April 5th, promising me that Mondays are great surgery days. Matt was happy (wants to put it off as long as possible) but I am not. I can't see waiting that long.

Later that day, I discovered that Monday is April 4th, not the 5th. I called and left a message because I want that extra day back. (What a ninny I am.) Technically then we've set a date, I'm just not sure if it's the 4th or 5th, but we have one. Meanwhile, my mission will probably be to start labor earlier, like after Easter. I can't see me going that long - physically or emotionally. Actually, every day is hard at this point. I'll probably start googling for ways to start labor in about 2 weeks.

I'm so huge that getting around is very difficult. Physically, I get out of breath easily, I can't get comfortable, and my muscles are weak. I have very little clothes I can wear because most can't cover me. Finally, I am embarrassed about my size, how much I've gained and how big I am. I hate going out, especially seeing anyone I know. I feel like after I've left they're probably talking about how I lost all that weight before and now I've gained it back plus. It's not just my belly, but my thighs are pretty scary and I'm in loathing of my back.

So, I'm going to tell you how much I've gained. Remember, this isn't twins. About 40 lbs, and I've got this one month still to go. Last pregnancy I gained 38 and started out higher, but it was mostly fluid. I lost all but 5 lbs of it by my 6 week postpartum visit. I feel like I'm going to end up at the same weight as before, only starting out lighter, and this time it's not fluid as I don't have much swelling. I feel like I'll be huge forever.

I'm not the beautiful pregnant woman with the still trim everything but basketball belly. You know, the kind they show in the magazines, who later they show trotting her baby around in the expensive stroller while she dons some tight shirt to show off her abs. I'm the shorter, rounder, plumper version with the scrappy overworn clothes, exhausted look on my face, and eyes searching for a place to sit down. Imagine something more akin to the girl who expanded like a blueberry and turned blue in Willy Wonka and the Chocolate Factory except without the blue.

Another month of this? You've got to be kidding me.

Pregnancy is not fun. It is a means to an ends, getting a baby/child. There's a lot of women out there who are able to do this a lot better than me. The waiting is excruciating, not just for all the uncomfortableness (huge understatement but how it's often described), but for all the worry. Yesterday I shook my stomach like a giant snowglobe for several seconds until he finally kicked me back. Poor little guy, his mama's gone nuts.

The good thing about getting a date (however ambiguous) is that I have something to tell the relatives/friends/coworkers who've been bugging me for information. What they ask most often is the name and for the 100th time, we don't have one yet. Yes, I know it's getting close, believe me I know. We just haven't been able to settle on one. Boy names are harder. I'm going to have to see his little face. What does he look like? A Daniel? An Evan? A Jack? I need some good names because I really am not in love with any of them.

Or, if you've ever seen that Seinfeld episode where Kramer was doing the movie phone...I'll look in to his little eyes and say, "Why don't you just tell me what your name is?"

Feeling crappy

2005-03-02T11:22:00.001-08:00

I'm grumpy and tired and don't feel well. I actually had to take several breaks while making my daughter's PB&J or when picking out her clothes. I just weak, my right shoulder is weak and sore (not severe, possibly computer related, but I can't lay on that side and don't want to use that arm), and slightly sick to my stomache. Maybe it's because I only slept for 1 hour last night. Just 1, from 5-6, when I then had to get up for work. Maybe? I should say that's probably the reason I feel so bad.

So I called my OB's office. A medical assistant calls me back and tells me that it's all normal for this stage of pregnancy or caused my my apparent cold. I try telling her several times that I don't have a cold, only this damn cough I've had since the beginning of December. Besides, I'm more concerned about this sudden weakness and fatigue that came on this morning, and I've been pregnant before. On and on she continues about how so many people in her office are sick with the same cold. I Don't Have A Cold!

So I asked her to have someone else call me back. This is a huge inconvenience since I have an appointment tomorrow, why can't I just wait until then?

Good question, why can't I?

I just can't. I feel terrible.

Related or unrelated, my urologist called me this morning and told me that my second 24 hour pee test also came back at 240 for protein which is twice normal, but below preeclampsia levels. He said he's sending me back to my OB for monitoring. Besides, he tells me, this is more for a nephrologist than a urologist. He says he talked to a nephrologist friend of his who said it's probably fine, just to repeat the 24 hour when I'm post partum to see if it resolves itself after the birth. (Googled protein in urine besides preeclampsia and get things like diabetes, lupus, multiple myelome, or kidney disease. Not a good search, so I'll dismiss it all. Well the diabetes one made me think since I do have PCOS which means insulin resistance, and I also have a history of big babies with my nearly 9lb daughter. On the other hand, I did pass my 1 hour GD test.)

I guess I'm just feeling tired and bitter. I hate it when my feelings are dismissed without even listening to them. I am not feeling well monitored during this pregnancy. Like I can just have another if something bad happens.

Reality is that I'm probably feeling so horrible from not sleeping. And the protein is nothing to worry about. And I'm just so worried that something is going to happen and take away this baby. I feel powerless and getting angry at the doctor's office when they're probably giving me normal, rational care. I'm simply paranoid and driving myself and everyone else crazy.

Shorted

2005-02-28T19:50:00.000-08:00

My shirts are too short. Almost all of them. It's really frustrating. Either my panel shows or the bottom of my belly. Neither is that attractive nor anything I want to display to the general public. I don't want to have to buy any new clothes but I don't know how else to make this work. ARG!

Did I mention that I'm 46 inches around measuring at the belly button? I'm huge. Really.

And only 1 month left.

Religion as divider

2005-02-26T21:58:00.000-08:00

My best friend called me yesterday to talk to me about how hard it is to find new friends. Tell me about it. Of course I'm a little peevish about her looking for new friends, but I did move away about 4 years ago so I guess it's bound to happen. Also, love and friendships are in that group of things for which there isn't a limited supply.

So she's been trying to meet other women who have Down's syndrome children. She's been having a hard time because where she lives most are Mormon, and she isn't. Her husband was raised Mormon but left the church before he met her. The Mormons kept coming by to get him to come back to the church. Eventually he told them that he was married, not interested, and his wife wasn't Mormon. The local Mormon church actually sent him a letter to tell him that his blessings had been rescinded. I had no idea you could revoke blessings.

Anyway, she met a new woman who also has a Down's baby and toddler and they took all their kids to the park. Everything was going well and somehow in someway sexuality came up and the woman informed her that the Bible is against homosexuality. I look up to my best friend Valerie exactly for what she did which was start questioning her.
Should the Bible always be taken literally?
Yes, it was written by G-d.
Then you shouldn't be doing x y and z which the old testament expressly forbids.
The Bible was written long ago. That was appropriate for that time.
But why should some things be exact and others modified?
Because it has always been wrong to be gay.

What the woman didn't know was that Valerie's brother is gay. It's hard to be friends with someone who thinks murders can go to heaven if they repent, but a gay man because he refuses to apologize for who he loves.

I wish religion wasn't so divisive. Our country is so divided right now among political lines, but I think it has more to do with religion. How can you get both sides to talk to each other when one side seems thinks the other is going to hell? I don't believe in hell, but I wouldn't wish that on anyone except murderers, rapists, and such truly evil people.

Tomorrow in my speech class I will speak on gay marriage. Simply put, I don't think religion should be part of it. A church can decide who it wants as its members and who it doesn't. A marriage in a church adds special meaning for the couple with faith, and a church can refuse to marry anyone. The state on the other hand should not discriminate against any consenting, unrelated adults. A marriage by the state offers legal protections. A marriage in a church and marriage by the state have the same name, but are not the same. Why then would the churches want to stop state weddings? It is not a love thy neighbor type of situation, that's for sure.

-----

On other news, today was a busy day for Janie and I. She went to a sibling class at the hospital taught by one of those chirpy always happy and excited types of people. The video she showed was made at least 20 years ago, complete with the big 80's hair styles and infant car seats that faced forward. Then Janie and I went to a 6 year old's birthday party at the bowling alley. Janie would basically drop the ball straight down, then sit and watch as the ball slooooowly made its way down the aisle (gutters balls prevented by ingeneous rails). Then we went for haircuts and grocery shopping, then I went home and took a little nap. What a day. I wish I didn't have class all day tomorrow, I'd really like to rest.

Second Child Benefits

2005-02-22T10:13:00.000-08:00

Why being pregnant with the second child is better than it was with the first:

When people ask if this is my first, I get to answer that it's not. That immediately stops them from giving me assvice.
Going into it knowing I will be having a c-section. No birthing classes. No fear of labor. Scheduled birth date.
No panic over whether my waist will ever come back. Yes, it will, not right away, but eventually if I work on it.
Ability to buy or use used items. With Janie I wanted everything new. With this one, it's everything used. Well, maybe a few new things but not much.
Hoping I will not be watching this baby every few seconds to make sure he's breathing, like I did my daughter.
Knowing going into it that I will want to co-sleep, breastfeed, and use disposables. It worked for us before so hopefully it will again.

And the #1 best thing is going through all this with my daughter. I love when she hugs and kisses my tummy, tells the baby stories, or shakes my belly to try to wake him up to play. She loves to tell me all the things she wants to do with him after he's born. Sometimes I think she's even happier than I am. I feed incredibly lucky that the IVF worked and we're able to give her a sibling afterall. I was setting up to settle on an only child if it didn't work, but now I'm really enjoying being part of building this sibling relationship. I think the thing I'm most looking forward to is introducing her to him after the birth. I can't help but smile everytime I think about it.

Coming to Terms

2005-02-18T11:14:00.000-08:00

My mother called last night and told me lots more about Meryl and her family. Basically my mother said that she and her family seem very normal and interesting, in contrast to my sister's boyfriend "the doctor" who still seems kind of strange.

I've got to get over this feeling that something bad is going to happen. I am privately the most negative person in the world. Publicly, I smile and say I feel great. When I'm alone, I obsess over everything and am convinced that doom waits right around the corner. I've got no real reason to feel this way. I've just got to knock it off and start moving past it.

I met with the urologist today and he said that my protein isn't high enough for preeclampsia, I've got no swelling, and my blood pressure is back to 105/something. So he ordered another 24 hour test, but he's going to release me back to my OB with a note saying that I'm fine. See, I really am.

And I've had no bleeding or early labor like I did last time, although I keep looking and expecting to see it. Why do I drive myself crazy like this? I'm going to wake up in just six weeks with a healthy baby and wonder why I didn't enjoy this pregnancy.

There is no real justifiable answer for it. Am I a hypochondriac or just trying to brace myself for some sort of fall? I had really talked myself into believing that I would never get pregnant again, that I'm still sort of confused. When I wake up in the morning, I'm surprised to see my belly, no matter how big it is. When people gush about this baby being a boy I get embarrassed, as if I'm making it up. I don't think these thoughts are normal.

One of my favorite things is to just sit with my hands on my belly and feel him moving around. He's big enough so that his movements aren't just in one spot. He's taken up the entire space, so when he moves I can feel it all over. And when he juts out a foot, it kind of hurts because he can really push it out there, and I try to grab it to feel any detail. And I do it because it reassures me that he's alive, that he's active, that he's real. It's like the practical side of me is directing my hands to feel the movements, that the more I feel the more it will sink in that it's really happening.

Work has been going horrible because I'm so distracted by all of this. There is barely a time during the day when I'm not aware of my pregnancy, either by his hiccups or hiking up my pants or the constant bathroom visits, yet I still feel like I'm just becoming aware of it.

Sometimes I just want him born now so that I can walk away from the table with some chips, a winner. He's alive, let's do it before something bad happens. Then I think about the NICU and how horrible that would be and I tell myself that the best thing I can do is to let him stay. I'm the human incubator and science can do no better. Besides, I tell myself, you've got so much work you've still got to do before he gets here. If he were born tomorrow you'd be in big trouble.

So I'm going to work on getting my act together before he is born. I will get my work projects done, my home projects done, and maybe even figure out a name for him. Meanwhile, I will also work on accepting the state that I'm in. Believing that he will be healthy and stop bracing for that not-so-inevitable bad news. Some times good things do happen. Janie is living, breathing, mess-making proof. It's time I stood in the sunshine, smiled, and exhaled. Maybe I do deserve it.

Miscellaneous

2005-02-16T00:19:00.000-08:00

Random late night thoughts...

Had a great sex dream last night about Elvis. Young Elvis, and it was very realistic. I hummed Suspcious Minds a lot today.
Belly button is flat as a pancake. It won't poke out, it didn't with my last pregnancy either. A guy at work once told me that you're supposed to tape a quarter to your belly button to keep it from popping out. I hate to think of someone actually following that suggestion. It either will or it won't, quarters won't help.
Janie has taken her baby playing to the next step. She likes to put her head and shoulders under my shirt and pretend she's in my belly. She moves around a little and I rub her head from the outside and wonder aloud about good baby girl names until I pick the name Janie.
I've been eating too many Oreo cookies. So addictive.
My pants still are falling down. The under belly thing still doesn't work for me.
My shirts are too short for my big belly. The underside of my belly gets lots of cool breezes.
Combine below belly pants with too-short-shirts and you get a very unusable wardrobe. Since I can't buy anything else at this late date, I've been recycling the few workable items I have over and over again.
I have not had a school day yet this semester where someone didn't comment on my size.
My professor introduced me to a speaker the other day as Pazel who is due in April. I guess that's all anyone now needs to know about me anymore.
We're shopping for a new tv. Matt wants plasma and big and HDTV, so he's priced us far beyond what we're willing to spend. In other words, we may be without a new tv for a long while.
While working on an electrical project under the house today, Matt discovered a small swimming pool of standing water from the rains under our bedroom. Our new beautiful gutters and downspouts were directing the water right into the crawl space. If he hadn't been working on this other project, he never would have found it. He adjusted the downspout, and tomorrow he's going to get the water out. The fun never ends on this house.
Working on a family geneology project, my brother sent me the marriage certificate information on Matt's parents. The year was when Matt was a year old instead of a year or two before. When Matt got home I told him about it and of course he said it was wrong. He called his parents and found out it was right afterall. What they said (and I'm suspicious) was that they had found out their wedding in 67 was illegal so they had to redo it in 70 when he was 1. They had never told him this story before and were so surprised that he found out. I'm sure they're telling all their neighbors in Nowhere, Nevada, to beware of any family secrets because they are all out there on the evil internet, although I'm not sure they'll tell them what family secret was discovered. Of course I then got to tell Matt that I always knew he was a little bastard.

Effort versus Results

2005-02-14T07:42:00.000-08:00

Happy Valentine's Day! Tonight we will cook steak and beans, and dip some strawberries into chocolate. It would almost be romantic except our daughter will be there. Last night she signed and drew her card to Matt while I wrote mine. We then put them with some chocolates into his truck to surprise him this morning. As soon as we got back in the house she ran in and told him. I guess 4 year olds aren't very good with secrets.

I had class all day yesterday on Leadership Communications. Basically it is a speech class in which we are called to give a prepared speech and several impromptu speeches just to get used to speaking in front of others. For one of my speeches I had to talk about a bad past manager and I thought I'd share it with you.

He was a partner at Arthur Andersen when I was a staff person, and was counseling me. I was exceeding the budget on a job, certain things were taking a lot longer than expected. I was working as hard as I could, and there was no other way to do it and get the comfort I needed, at least in my opinion. He lectured me that effort didn't matter, only results mattered. It didn't matter if it took me hours or days, as long as I got the right answer.

I still think about this in light of Arthur Andersen falling because of short cuts and poor auditing all in the name of fees. They sold their credibility. It is not all about results afterall.

Effort does matter. I can't help but put this to the infertility test and wonder how different I would be right now if I had never gone through infertility. If I end up taking home this baby I'm carrying, the result is the same. Yet, to get him we went through so much. All this effort doesn't just disappear because it worked.

I'm sure he's gone on to work for some company making tons of money. But I can't help but hope that not everything goes so easily for him and he does have some effort. I don't think he'll remember me or that whole lecture, but maybe he'll learn that he doesn't know everything afterall.

I hope you have a great Valentine's day. Eat lots of chocolate and get lots of loving.

Code Yellow All Clear

2005-02-10T09:46:00.000-08:00

Just a quick update. I finally got back my 24 hour urine test. My protein level is high (210 when normal is 21-120), but not at a preeclampsia level (300+). My blood pressure is still low too. So I have a few more tests ordered and an appointment with a urologist. I'm not sure how this will go, I hope he doesn't want to see my goods. I'm glad that things are okay and will just sit tight until that appointment.

In the meantime, I have a question. When I cough or tighten my stomach muscles, the belly gets super pointy like a conehead from Saturday Night Live. I'm hoping this is because my stomach muscles have separated and not because he actually is a conehead. That could explain why this cycle worked after all... alien intruders.

Peace Pazel Style

2005-02-09T13:48:00.000-08:00

In the interest of peace in blogland, I have deleted my last post. You'll have to believe me that it wasn't angry, excited, hateful or any of those related emotions, but more along the lines that I could get upset but wasn't going to. Apparently that can still get some people upset.

Quite frankly, as to this whole argument, I'm bored with it.

So, let's venture together to my happy place. It is near the ocean, but not hot. There is a slight breeze and a hammock under some shady trees (I tend to burn). Today there are hundreds of hammocks set up on many, many trees almost in a grid pattern. Every so often there is a cabana with gorgeous men with deep tans and six-pack abs blending up yummy drinks with long straws willing to fetch us whatever we desire. We have no place to go and no time we have to be there, so come pick out a hammock and enjoy the peace with me.

Ahhhhhhh.

Questions on the Big Metaphor

2005-02-05T11:55:00.000-08:00

Generally I go out of my way to avoid controversy. I don't like to confront people or cause problems. On the other hand, I can't just let things go sometimes.

I was reading another blog about how pregnant infertiles should ship out of infertility island. Well, not all pregnant infertiles, just ones who haven't suffered enough in the Infertility Olympics. This feeling was applauded by many. I understand this metaphor, and can't say that I disagree really, but I have questions...

Let's take this out of the metaphor. What does it mean to leave the island? Does it mean to give up the community of infertile women? Since I'm pregnant, does that mean that I'm not allowed to give support to other infertiles still waiting? When someone is waiting I tell them that I'm hoping for them. When someone faces disappointment I tell them I'm sorry. Is it wrong to do this? It's not like I'm saying "I'm sorry, come see my belly pics." I'm not an asshat, just trying to give back some of the support I received when I was cycling or received bad news. I see it as sending over care packages back to my friends on the island. Maybe some find those tainted and don't want them. But I couldn't imagine just forgetting the women who are still waiting. I know what it's like to go through infertility pain, and there's not much support in real life. That's why we have the island, to give support and find new resources. Is it wrong to send back caring messages to those we got to know while we were there? If I post supportive messages on other blogs does that mean that in the metaphor I haven't left the island?

I also don't understand the term of pregnant infertiles using up the valuable supplies on the island. As far as I'm concerned, I've never asked for nor expected support from infertiles still waiting. I know that what I'm going through right now is not the same as what they are going through. Again, I've been there and I do remember. There's so little support in the real world that we have to band together. When I post on my site about my ups and downs, truly I'm not expecting the infertile women to rally around me because I don't expect them to come to my site at all. I am expressing what is going on with me. Actually, if there's anyone I want support from it's other pregnant infertiles who maybe can tell me that I'm not crazy and that my fears are real.

How does one demonstrate that they have left the island? I imagine myself on the ship. I wish I could tell you that it's a big luxury cruise liner but it's not. It's small and the ship is often tossed by horrible waves. You don't know to which cabin you've been assigned until you get on board, and it's not based on merit. You think you have a good one, but then you find out that there could be issues. And the sea changes so much. I'm waiting for the results of my protein test and Dee's waiting for her amnio results and Jen P is spotting. There are no guarantees and the voyage is not the beautiful cruise we all imagined.

Again, I'm not saying this so that there will be an outpouring of sympathy from the infertile ranks. They'd give anything to be here and I know it well. I'm just saying that it's not so pretty once you get here.

I just don't know how to show that I'm not on the island. I am on the ship. I am grateful to be here and I'm not trying to flaunt it. Actually, I'm in my cabin as I don't venture out very often. I've decorated it as to how I see fit, which for me means no belly shots but I do have a figurative picture of my daughter and the nursery. I need these things to get through the stormy seas.

I try to be sensitive. While the name of my blog will not be changed (as it is my name), I did change my banner so that it's clear that I'm pregnant and have a child. Like a warning flag on my door before you come in.

What I'm trying to say is that I'm not sure how far I'm supposed to go to show that I really have left the island. There is no guidebook. Am I supposed to stop posting my support to infertile women's sites? Is this for all infertile women or will a list be created to show me which think it's okay to say "I'm sorry" and those who think I've lost my credentials to give sympathy?

I'm not trying to be melodramatic, but I am confused by all the us versus them when we already have so many in society against us. It's not like I'm hanging out in RE waiting rooms or crashing IVF meetings, I'm posting my thoughts on my blog and sending out messages of support to those who supported me. Am I supposed to close down my site like Jen P at The Reich Ovary? Am I supposed to just turn my back on the non-pregnant infertile women and pretend that I don't care about them? Am I supposed to keep my cabin sterile, neither happy nor complaining, with no outward signs that I am pregnant or that I have a child?

So I've been kicked out of the cool girl's club. I'm not surprised as I never have been one who cliqued if you know what I mean. I don't think it's all because I'm pregnant, but comes back to that question of not being deserving, not having suffered as much as others, because some pregnant or infertile women with children are still allowed to belong. I've said it before and I'll say it again, why throw the undeserving label at the infertile pregnant women? Why not at those who got pregnant on accident, or after 1 month, or on their honeymoon, or by simply the power of positive thinking? I thought we all discussed the Infertility Olympics long ago and decided that while the spectrum was huge and while some women deserve gold medals, that there were no winners in such a comparison?

So if you're interested in hanging out in my cabin, come on in. Sorry I didn't make the bed and that my room is rather boring, but I'm not much of a writer. And please ignore the big old orange urine container in the fridge, I'm doing my best to try to myself. And if the sight of my belly or the talk of my daughter bothers you, I'm sorry, maybe now isn't a good time for you to visit. I would be happy to send you care packages back to the island if you'd like. And if you don't, I understand that too and I'm sorry if I did and you didn't want it. It's so hard to know the difference.

The Secret is Out

2005-02-04T11:45:00.000-08:00

My secret life is over. I may as well come clean with it since I'm no longer under contract to not disclose it.

Up until today we were a Nielsen family. For the uninitiated what this means is that our televisions had trackers on them that made notes on what we watched. Each night it would call into the Nielsen company and upload this information. Based on this information from many, many homes, Nielsen would come out with ratings on television shows. Our family represented the viewing habits of 10,000 families.

For this, we received a $25 check each year and another $25 each time we purchased a new TV or dvd player. That's it. Matt hated it. He felt like it was big brother in our living room. I loved it. I loved the power that what I liked was what everyone liked. Yes! Yep, single-handedly we kept Clifford the Big Red Dog and CSI on the air. Unfortunately, my husband had a hand in those damn motorcycle building shows that now the Discovery channel seems to be showing 24/7. I had strict rules that neither Judge Judy nor Jerry Springer would every appear on our television, but apparently there must be other households making up for our lack of viewership.

Anyways, our contract ended and today they came and took away all the equipment. Matt is happy, I'm kind of sad. Now it's back to having no say on what comes on our tv. We are at the whims of all the other Nielsen homes and whatever they watch. I don't have any influence to save the shows I love, like Arrested Development and the Simpsons.

As an interesting point, this was not something we had chosen to get involved in. Actually, you can't call them up and ask to be part of it. They do it by random sample of addresses. When we bought our house, little did we know that it was already in the sample.

I've been proud to serve. I would gladly have done more. Now it's back to good old privacy and the freedom to watch whatever crap comes on without wondering if falling asleep with the tv on would cause an overabundance of weepy Hallmark television specials.

(p.s. Between you and I, I forgot to catch and save one of my pees today. How bad is that? Should I pour out all I've collected and start over tomorrow? Or carry on with the rest with the hope that it doesn't make a difference. I think I already know the answer but I'm always hoping for a way out.)

Just a little protein

2005-02-03T13:22:00.000-08:00

I'm very calm by all outward appearances. I really have no reason to be nervous, but I am a little anxious. At my OB appointment this morning I had protein in my urine (+3 on the scale of 1-4 where 0 is normal and +1 means to run more tests). Actually, what happened was that I went pee before arriving there, so I couldn't go but a tiny bit. They tested it and it came up positive. I drank two cups of water. A short time later I peed again, a tiny bit and it also came up positive for urine. I knew the second one was positive before they told me because the nurse came in to check my blood pressure a second time.

On the other hand, my blood pressure continues to be low, 100 over something. This is good because all that I read about pre-eclampsia is that blood pressure is high which causes all the problems.

My only weird feeling is that of fainting this morning. It starts with ringing in my ears, feeling of weakness, and then the world starts to go yellow. Before it does, I sit down with my head between my knees and I get better. I couldn't stand for longer than a few minutes this mornign without feeling it. My doctor said it was probably from dehydration as I acknowledged that I had only had a half glass of OJ with my breakfast that morning. I'm still feeling weak and tired this afternoon, but nothing unusual.

So my fun task for tomorrow is to pee in this very large orange-juice-looking container, saving all my urine except the first morning one for 24 hours. The worst part is that it has to stay refridgerated. It's a good thing I work from home because otherwise I couldn't imagine having to carry this jug from my office to the restroom all day.

Considering it takes 24 hours to do this test and the clock doesn't start until tomorrow, then it's the weekend, I may not have any results for awhile. As long as I don't develop any other symptoms, I'm to proceed as normal (except add an iron supplement since I'm slightly anemic).

Then again, once I know what the symptoms were that I'm looking for, I become hypersensitive to them. So now what's probably a slight headache from being behind on my water is now becoming a sign of pre-eclampsia. In other words, I'm going to drive myself crazy.

For those of you in the know, can you have pre-eclampsia without high blood pressure?

I'm working to convince myself that the protein was just a fluke and all is really well. I'm 30 weeks and 3 days, feeling huge and uncomfortable but otherwise well. My blood pressure is great. If it were such an emergency I wouldn't be home typing, right?

Good Old Fashioned German Values

2005-02-02T10:47:00.000-08:00

Last night in my Healthcare Public Policy class, we discussed the German healthcare system. I won't go into all the details, but the basics are as follows:

Everyone covered (including unemployed, poor, old).
Paid for by employees & employees as % of wages much like US social security.
Ability to go to any hospital or physician.
No long waits.

They use sickness funds which are similar to healthcare insurance companies except they are nonprofit and have strict rules from the government as to benefits and copayments. As for the negatives of this system, it is basically this:

The employee/employer tax contributions aren't able to support the expense.

This is because they have high unemployment (10%) and an older society with more people over 60 and very low birth rate. I don't know if this is true, but my professor said that Germany was considering charging couples with no children a higher rate than couples with children since they weren't supplying the future taxable workers. (Funny, my face looked just like that when she said it.) Of course not everyone child-free in Germany is infertile, but for those who are, this would be another slap on the face.

We had a very lively discussion in which we compared the German values and American values with regards to healthcare. Germany has a historically strong feeling of solidarity in which they want everyone to be covered regardless of their ability to pay. Maybe paternalistic or perhaps brotherly, but it is quite the opposite of the American system where we find healthcare to be a priviledge and not a right. While we care about those who are sick, god forbid we give everyone coverage because then our hospitals would fill up and we couldn't get in. Or, there would be a flood of immigrants to our country who would drain the system and then we couldn't get in.

German people also want to keep profit seeking out of healthcare. They even limit how much physicians can make. For the U.S., it's all about profit baby! There's the insurance company sitting between the hospitals and the patients, trying to collect more from the patient/employees and pay less to the hospitals all so that they can pay their top executives a multi-million dollar salary and show a great earnings-per-share to Wall Street. There's the pharmaceutical companies who in a race to get their product to market to make up for the high cost of research and start raking in dollars for their stockholders, gets a product like Vioxx to patients without knowing all the long term effects. And when they do find them out, they don't pull the product right away. And forget low prices or free drugs for the poor, it's all about profit.

As for infertility coverage, considering what we value in the U.S., it's not surprising that it's not covered. We call it a priviledge to become parents, not a right, even though everyone else can just do it on accident or with one good bottle of wine. Sometimes religion or ethics are thrown about as if they were major underlying reasons for denying coverage, and although I think that it plays a role, I don't think it's nearly as important as profit. Yep, money. It's our capitalist system at work again. What if it were covered? Then the RE's would have to be paid some lower percent of charges by insurance companies instead of the full fees they dreamed up and printed in their brochure. The infertility financing companies would have to crawl back into the hole they came out of, dreaming of a new way to make money off of the desperate. The insurance companies would have to pay out for yet another benefit, taking away money they could have spent on new marble bathrooms for their executive team. And our fellow employees may have to pay an twelve cents a month (as was calculated under Massachusettes program) for us to be able to have our selfish way.

So why is it that erectile disfunction is a covered benefit but infertility is not? Well, let's look for a minute at the board of directors and executive team of any of the major insurance companies. See any women of childbearing age? Actually see any women at all? What you will find is a lot of older men in suits who appreciate this coverage and whose baby making days are over. They are old school, with no paternalistic feelings for solidarity with their fellow Americans. They want positive analyst predictions, a strong bottom line and a bonus big enough to pay for their second home.

So I guess it comes down to values and in the U.S., we've decided to turn a blind eye towards our fellow citizens so that we could continue to enjoy our healthcare system as is. Unfortunately, we become one of the forgotten the day we are given our infertility diagnosis, but then it is too late.

I don't need infertility coverage anymore, but I will continue to fight for it. I see its chances of spontaneously happening as much as I see universal healthcare being adopted in this country as the right thing to do. I wish there were more spokespersons willing to speak out about it, although that is difficult considering the sensitivity of the subject. Yet, I can't help but wonder, if Bob Dole was willing to stand up for Viagra (paid is fine), then why wouldn't Julia Roberts be willing to stand up for infertility coverage? Maybe because she hasn't had to sit in the waiting room looking around at all our scared faces and bruised arms. Maybe because she didn't need infertility coverage but could afford the best money could buy. Maybe because she was able to get through all this without forming bonds with other infertile women, unable to see how the situation could be different without millions in the bank. She doesn't feel the solidarity that we need to make our voices heard. We have to stand together, and if we get pregnant, never forget and never stop fighting for our fellow sisters.

Now let's all clench our hands together and give them hell.

Plot Change

2005-02-02T01:02:00.000-08:00

Do you ever wonder what life would be like now if only...

A little over 3 years ago, when Janie was only 1, Matt and I went to Cancun with another couple. Our first Sunday there was Mother's Day, and I was determined to have a good one even though I was away from our daughter. It wasn't planned, just one of those uh-oh sort of discoveries that we made after we bought our tickets and made all our arrangements. I should have known that bad things would befall a woman who went out of the country on Mother's Day without her child.

We were laying on the white sand under shady cabanas sipping cold, blended, watered-down drinks, lazily sleeping and watching the water. I'm horrible at descriptions, but the water looks like one of those credit card commercials where the couple has gone somewhere wonderful on miles they earned by paying 29% interest. So light blue, clear, friendly and welcoming.

On this day there was a black flag which means no swimming. I'm cool with that, no problem. Eventually though, we got hot so my best friend and I decided to get just our feet wet to cool off. I got in as far as my ankles and then the waves started pulling me out farther and farther. I swear I wasn't trying to go in, but it was getting deeper and deeper and the waves were relentless. My friend was already out, but I couldn't get out. Standing on the shore, yelling for me to get out were my husband, best friend, her husband, a life guard and some other resort worker that the life guard was shaking his head to (dumb gringa). I could hear them yelling to me between waves, but it was tough. The waves were so strong and pulling me farther out. It was getting hard to get a breath between them before the next one would crash over my head. I couldn't scream, there wasn't time and I had to concentrate on trying to breathe and maintain my footing. I could see my husband between the crashes and the salt water in my eyes and mentally begged him to save me. My arms were trying to push back the water and my legs felt like they had ropes around them pulling them out to sea. Actually, I wondered why no one was doing anything because I was getting tired and knew I was about to go. My strength was gone and I was beginning to accept that I would not make it back out again. I actually knew the ending to my own story and was calm about it.

For some reason, the waves started to lessen. There was a little more space between them. I struggled and pulled myself forward. A few more steps and it went from waist high to knee high. At that point, someone grabbed my wrist and helped pull me out. I fell into the sand exhausted. Everyone was talking at once. My husband, pacing all around me was asking me why I went out and why I didn't come back in, didn't I hear him? My best friend was asking if I was okay and laughing that I really scared them. Her husband was saying something I don't remember, probably about us all needing stronger drinks. The life guard was telling me to stay out of the water when there's a black flag. I think the resort worker was just shaking his head before going off to tell the other four or five tourists who stopped to watch what an imbecile I was for going in the water.

Eventually, they helped me to my chair and I sat and sipped my drink. I couldn't believe that I made it out. I couldn't. I knew that I had slipped into some other path, sort of like those books we'd read as children where you can turn to a certain page depending on what decision you chose. It was like I had read that page, decided I didn't like how that decision turned out, so cheated and went back and made the other choice. I don't know how I did that, but I was amazed. I think I sat out there another hour just staring out at the water, not even realizing that half my hair was still in a pig tail and the other half was down.

I joked about how I could have really ruined their vacation by dying on the second day. I laughed at what a dilemma they would have had whether to stay after my death since they had already paid for the week, and besides I was dead, rushing home wouldn't change that.

But actually what I thought most about was my daughter. What would happen to a girl who lost her mother at only 1 year old on Mother's Day? She wouldn't remember me. She wouldn't know how much I loved her. She wouldn't know all the nights I stayed up with her, all the kisses I gave her, or any of the things I wanted to teach her. I would be erased from her life and it was a horrible thought.

It's not like I purport to be the world's best mother. Trust me I'm not. But, it would be as if I had never been a mother if I hadn't left any impression on her life besides my death. She'd end up adopting another mother, and what would that make me? The time I spent conceiving her, pregnant with her, and caring for her as an infant would be gone.

I don't really have much of a moral to this story, but how quickly everything changes. The most dramatic things happen in the blink of an eye, and then there's no going back. For my friend Valerie, her baby was born with Down's syndrome. Just like that, everything is different. Forget what you know or planned for because circumstances have changed.

Sometimes things happen on these blogs that are just like that. There's a miscarriage or a birth. Someone gets a positive hpt while on break while someone else gets a negative after IVF. It seems random to me. It's not based on any sort of merit based system. And each time, things change and there's no going back to the way they were they day before. And you hope that there are more good things happening than bad, but it's never even steven for any one person. One person can be dealt more than their share of bad and it's not fair. And I'm here pregnant, and I can't tell you why since it's a mystery to me why one of those poor embryos would stick, but one did. And my life has changed, no matter the final outcome. I just wish I knew what it was. I want a tiny peek into the future to see that it's okay.

Okay, it's 2am and although I'm still not sleepy, for the sake of my morning self I should try. I wish I could get comfortable. I wish the baby was this active during the day time instead of the night. And I really wish that Matt didn't snore so loud. Good night to all my sisters, especially Dee and Jen P who are on my mind. Kind of strange to worry about women I've never met, but I feel connected, yet disconnected and helpless at the same time. So hard to just be there for a friend when you can't be there.

Ever Felt Stuck?

2005-01-31T13:08:00.000-08:00

Beautiful day today. The sun is shining. The gardener next door is working on his yard. The weeds in my yard continue to thrive.

There's a million things on my To Do list, but I'm stuck. I've felt stuck for awhile and I'm not sure how to fix it. Is it simply procrastination because sometimes it feels so much heavier.

As I've told you before, I work at home. It's been over a month since I've been in the office, which you would think would be good, except I miss it. I miss the people, the productivity, the quickness of the networks and availability of the resources. I miss having someone stop by my office to ask me to lunch, or having someone come in and tell me the latest gossip. I am damn lonely here at the house.

I no longer have my office here at the house since we're changing that room into a nursery. My office stuff is now in the living room, but it's not comfortable yet and I have no workspace in there yet. I've tried working from my bed, my couch, and my dining room table. I can't concentrate or focus. It's too quiet. I turn on the TV and it's too distracting (and there's Nothing on, believe me). I turn on the radio and it plays the same songs over and over, or talk radio has the same news updates every hour.

So I end up on the internet checking blogs instead of getting things done. And then my To Do list gets longer and I start feeling disappointed in myself. So I start writing, and here I am.

I know what you're thinking. "Pazel, just get back to work." Yet, I feel like I'm stuck. I feel like I can't. Like my mind is addled and my desire is gone, washed away. What can a workaholic do without work? Apparently, not much but feel stuck.

I'm about to get up and move my work site once again. I'll try a different spot and hope that it makes a difference. I doubt it. I just have to force myself to do it. Really. Starting now. I mean in a few minutes after lunch. Then I'll really get going. Really. This time I mean it.

sigh

The Blues

2005-01-29T22:10:00.000-08:00

I'm feeling decidedly better. For now at least as I seem to change course pretty regularly. My worst times are in the morning and afternoon when I feel sick and stuck. In the evenings I start to feel better, and by night I can be downright chipper.

Okay, I'm going to talk about the baby room so bail out now if you're not interested.

Today was supposed to be a day of great progress on the nursery. Yesterday, we had gone to the Home Despot where I pointed out to him the bi-fold doors I wanted for the closet. He didn't agree so we went and looked at mirrored doors which reminded me too much of the 80s. Next we investigated the traditional doors which upon seeing them he determined looked too ugly and depressing. Invariably we ended up back at the bi-fold doors which we purchased.

This pretty much sums up my husband. I have told him that he needs to be more like George on Seinfeld and always do the opposite of whatever he's thinking which would save me a lot of time and aggravation. Trip to Disneyland? He complains for weeks about the crowds and money and weather and travelling. Once we get there, he has a blast and brags to everyone afterwards about the trip including sharing pictures and stories with all his relatives. Minivan? He tells me how unsexy it is and all the various cliches that I will suddenly grow into. Now he loves it because it has the loading capacity of a truck but without having to rope the load up. (Yes, there are other good things about it, but this is what interests him.) Father night at Janie's school? He doesn't want to be hanging out with a bunch of strangers and would much rather have a nice quiet evening at home. When he gets back, he's talking about the good guys he met and how much he learned about what she's working on at school.

I could go on and on but I think you get the picture. My nickname for him has always been "my little raincloud" because he never seems excited or happy, especially not about anything new. Yet, over the years as I have dragged him on my many ideas he has come away having a great time and extremely glad that he went. But it is not always cute and sometimes it gets hard to always be the positive one.

So today was supposed to be a day of great progress on the nursery. He was going to paint and then hang the closet doors as well as the door to the room. He borrowed a paint sprayer from a friend which he said would make the job go quicker. I had my doubts since these doors aren't that big anyways, but I didn't voice them as I knew it was just another opportunity to use a new tool. Fine. Anyways, he spent the morning playing with the paint sprayer which he couldn't get to spray the right consistency of mist for the doors. He ended up painting them with the brush anyways. Trouble is, he didn't prime the wood as I had told him. I had bought him everything for priming as these were bare wood doors. He decided that they didn't need priming, just paint because he spent all the time on the paint sprayer and he wanted to make up for it.

I can't tell you why, but for some reason this just got to me. It did. Isn't that stupid? I'm not a controlling person, but for the nursery I felt deflated that he didn't also feel the unsaid importance of everything being done with quality. And it threw me into a black hole of sadness thinking that he didn't care. These are closet doors. Yet, I felt like it represented so much. And I couldn't get back from it. I didn't yell or scream (not my style) but stood there just watching him paint for the longest time. In my mind I was saying the most horrible stuff, and thankfully only about 5% of it came out my lips.

I came inside and lost my will to work on the nursery. I instead worked on organizing my new office area in the living room. Not nearly as much fun, but I was no longer in the mood for fun. He came in, saw I wasn't working on the nursery, so decided to work on his electrical project in the garage instead.

So no progress. None. Maybe a few steps backwards instead.

Tonight I cooked up steaks and fatty mashed potatoes (with sour cream, cream cheese, butter, shredded cheese and garlic powder), his favorites.

Tomorrow I have great plans for the room. Hanging the wallpaper border. This will be the only wallpaper in our whole house. I've wallpapered once before at a different house, but this is decidedly different because it's for my baby. See how much pressure I've created for myself on this one room?

I think it all stems from the fact that I've wanted to do this room.... forever. I've always wanted to create a beautiful nursery. I couldn't with Janie because we moved when she was 2 months old and then moved into a temporary rental. This feels like my first and last nursery and I want it to be so very perfect. And nothing is perfect, especially not my budget or craftsmanship. I'm not much of a decorator so this is kind of me taking a chance. It could end up being the first fully decorated room in our whole house (with the exception of Janie's room which is half decorated by me and half by her overflowing supply of stuff - another thing I've got to work on). I want something to show that says how much we're wanting this child, even though anyone who knows us knows that already. It's not showing off since we don't have many visitors, but some sort of validation. I don't know how to explain it. Nursery fever? More like nursery pressure. Wish me luck.

An Apology

2005-01-26T16:59:00.000-08:00

From an inferile sister who doesn't name my blog, may not be meaning my blog, but well could be, not happy about happy pregnant posts. What I don't understand is the part where the fee for pregnancy has been increased to not just some suffering but to reach the highest level to become deserving.

"And, of course, in true Pottery Barn People fashion, it's usually the one's who haven't been through 12 miscarriages or 7 IVFs.
Uh huh."

http://thevintageuterus.typepad.com/infertileone/2005/01/and_another_thi.html

I never expected everyone to like me. But I never meant to hurt anyone. If I did, I'm sorry. I mean it.

I haven't forgotten what it's like to be infertile, I don't know how anyone possibly could. I am not strolling through this pregnancy carefree and happy, but with doubts and fears and my head turned backwards looking for the bogeyman who is bound to jump out from behind the bushes and take away all of this. Some things are too good to be true.

I spend a lot of time trying to fight these fears. To feel normal. To let go and feel pregnant and normal. I haven't paid as many dues as some women, but this didn't come easy either. Sometimes I'm able to let my mind take a rest and my hope to take over. I lay in the daisies, stare up at the clouds and imagine I see happy, fluffy clouds rather than the dark ones on the horizon. I allow myself to buy baby things or start decorating the nursery. It's a hard leap to make, and when I do it I get proud of myself. Sometimes I post about it because I want to share this new, fresh feeling.

Yet, being a pregnant infertile is an oxymoron and there is no clear path. Dare I to complain about my aches and pains? Then I'm ungrateful. Can I post a happy post about finally purchasing some baby things? Then I'm flaunting that happiness. Too happy.

So what am I supposed to be? What am I supposed to act like? Tell me what is right, because I certainly don't know. That's why I fluctuate and can't seem to stay in one mood for a whole day or even a whole hour.

I'm grateful I haven't had to suffer as much as other women. I could give my fertility resume, but it won't compare but I don't understand why that's required. Why pick on a pregnant infertile? I haven't gone through this scar free. It wasn't easy. Time goes by slowly when you're dealing with infertility.

Maybe it's just a minority opinion or she was just having a particularly bad day. It's not the three of you who responded to me today. Three different women in three different situations and you seem to understand.

And I shouldn't let it bother me, except that I never intended to hurt anyone. I've instead just sputtered through posting when I can and on my thoughts at that moment. Not well thought out. Not well planned. Not even well written. Just honest pictures into my mind. Even then, it's edited as it's written as who can possibly express all that they think or feel into a blog? Well, I ask that but I know that there's those with the gift of word who can. Me, I'm not one of them. I can put words together, but they still come out vanilla. I hope it's only because I have a vanilla vocabulary and not an actually vanilla person with a vanilla life. But maybe I am and just don't know it.

So again, in case you haven't seen it already, if my pregnant posts have bothered you, I apologize. I have no idea what I'm doing. Really. This is all new territory for me. The last person I'd ever want to hurt is an infertile because I know they're hurt enough already. I'm not sure what I should make of this blog or which direction it should turn. Maybe I haven't worked on it hard enough, or I've taken it for granted. I'm not sure. I've got more thinking to do.

Many Doubts

2005-01-26T07:44:00.000-08:00

I'm trying to think of something witty or interesting to say but I'm not coming to anything quickly. There's a few things on my mind.

I could write about school. How in my class last night I was called upon and couldn't grasp the question so gave a stupid answer. Thereafter I questioned the wisdom of getting her to let me in despite not having taken the prerequisite. Maybe that wasn't such a good idea. I've made myself a new promise to reawaken my inner overachiever to make special preparations for this class.

I could write about Janie. Usually she reports to me who she played with at school, and it's generally a good sized list. Yesterday she told me noone and my heart broke (although I hid it well). I told her to ask them to play with her or if she could play with them. She told me that she was afraid because they could say no. I wanted to wrap myself around her and protect her from the world. Instead I had to casually tell her that if they did, she just had to ask someone else because she is so much fun, so funny, so smart and so pretty that anyone would want to play with her. Then I laid awake in bed last night thinking about how similar she is to me when I was that age and how I want more for her. And I thought about her elementary years and desperately hoped that they would be happy. This motherhood thing really hurts.

I could write about the nursery. We painted it two shades of blue this weekend, one for the ocean and one for the sky. We now leave the door open so we can look inside each time we walk by. It is so beautiful, calming, and promising. So happy and hopeful. I can't help but smile when I see it.

I could write about work. My big project is moving along, but has to speed up to get done before I have this baby. It's a financial projection for a huge project that will be going to the board of directors while I'm on maternity leave. It's all on me. Just this week we fired the consultants (who I told my boss were a bad a idea back last March) because they haven't added anything of value and I've had to do everything anyways. I've got to do good on this project. If I don't, well, I can't see them keeping me if I don't. If I do, then I could have a chance to possibly be in charge of it financially when it is built. No pressure really.

Truth is, I'm having doubts about my blog. I'm wondering if I should continue it. I used to hold the notion that I had something interesting to say if only I had an outlet. Now I do, and I find that I don't. What do you know, I'm ordinary in yet another way. It's kind of disapppointing. So I've been doing a little soul searching and part of me doesn't want to give up. I'm not writing this as any sort of plea. I'm not the pouting take-my-toys-and-leaving sort, but more of the throwing a party, don't think many are attending or having fun so thinking of calling it sort. Maybe I just need a new direction, or to write on new subjects. I can't rant on about the RE's office anymore, or talk about my fears of IVF or it not working. I'm a scared pregnant woman with many inner doubts about pretty much everything that means anything to me. I'm just not so sure of my ability to express them.

A Quiet Baby Makes a Worried Mother

2005-01-24T07:28:00.000-08:00

Friday the baby was too quiet. He's been quiet for awhile, but more so. I ate an apple and two cookies, laid on my side, and tried to count kicks but there were none. No movement. After an hour I called my doctor. After 2, I went to OB triage. I learned that my little son hates monitors, so he tried to kick them of. He was active, he was fine, and I cried.

I'm so attached to him, I am deathly afraid of something bad happening. I know that they do. I can't help but have these bad thoughts, these dark fears. Saturday he was even quieter, with probably only one kick for the whole day. I didn't go in this time, I just tried to stay busy and remind myself that he's fine. Sunday morning he woke me at 4:30 trying to kick his way out. I was tired, but relieved. He returned to his normal movements and schedule and my mood has improved.

It's hard to love a child you cannot see. I put my hands on my belly and feel the lumps, trying to guess what they are. I talk to him, but I'm not sure what to say. It brings me to tears. I want to tell him how much I want him and love him. I want him to know that I'd do anything for him. I want to tell him that he needs to stay in for now, but one day soon I will hold him in my arms. Yet, it's hard to talk to him outloud. It makes me too vulnerable. I can barely get a few words out and I feel like I'm in too deep. I let it happen. I got attached and now I can't turn back. I don't know what I will do if he is not okay.

My best friend's daughter was stillborn. Having it happen so close makes it very real. I witnessed her grief and I understand it. She became pregnant with her son as soon as she got the doctor's okay. But what if you're infertile. What if it took everything you had, physically, emotionally, and even monetarily, to get pregnant and you lose the baby? I can't say that the pain would be worse, because I don't think there is worse when it comes to death. She wasn't replacing her daughter by getting pregnant right away, she was doing what anyone would do. But what if you can't? If I lost him now, I'd have all the pain but no second chance. The fact that I'm this far is no less than a miracle. I can't help but think that I'm over my quota on miracles. If I lost him, I'd be out.

It is an attachment to him. To this baby. There's only a few things I know about him. I know that he loves to get up early. He kicks when he's hungry, like he can smell food and wants some. His favorite target is my cervix (my daughter, I think because she's a girl, would never do that). He must think that my coughing is normal, so he sleeps through it. And he hears Janie sing songs to him and he kicks and wiggles in response.

I never thought I'd have a son, and I dared not to dream it. I had given up on the idea years ago when I learned the odds were slim when dealing with severe male factor. Daughters are great and I'm not picky. But now despite all odds, I am having one. I hold my belly and whisper that he's mine. I can't say it loudly for all my fears. I'm afraid the fates will see me getting what I shouldn't have and make a change. I want to hide him, protect him from the bad things that swirl around, that I know can happen.

I wish I could just become one of those blissfully happy fertile pregnant women who spends this time planning her showers, decorating her nursery and complaining about the ten pounds she's gained. Sometimes I forget and play along (although my gain is far more than 10 or 20 or... ). But sometimes, like when he's quiet, I get worried and let my demons out.

Meanwhile as I type this, he's kicking me pretty good. Wants to cheer me up I guess. Wants to let me know that he's fine. He is. He really is.

Blusher not needed

2005-01-21T07:53:00.000-08:00

I will blame this on pregnancy for lack of better excuse.

Tuesday night after class. I approached the professor to sell my experience and get past the prerequisite. When explaining my work experience I... BLUSHED. Totally and completely red faced.

Last night during class (a different class). The professor has each of us give a 1 minute introduction including our background in healthcare. I... BLUSHED. Later, when he asked for suggestions for interesting topics in healthcare to discus, when I gave my idea I did it again. Bright red. Whole face. And I just knew that everyone in class was looking at me and wondering why I was blushing.

I haven't blushed in so long. I am used to speaking in public, giving big presentations, and can speak well about myself to other people. Why all of a sudden am I turning red in the face whenever I open my mouth in class? It's killing me! I'm no shy butterfly, but I sure look it. And my face is so pale that it's very obvious.

I hope this is temporary.

Checking In, Still Sick But Recovering

2005-01-19T09:19:00.000-08:00

I've been having problems with Blogger lately so let's see if this will even post.

A few updates... I'm on antibiotics and have cough medicine with codeine which I take at night (although I want it now). Basically, at my OB appointment in December, I had been sick only two weeks so they told me to take only Claritin and Tylenol and try to heal myself. Now I've been sick six weeks (two week-long colds, one 6-week lingering horrible cough), so they've opened the doors to all sorts of pharmaceutical treatments. I'm so worn down and exhausted that I'm willing to try. So my baby won't go to an Ivy League school. It will save me tons on tuition.

They also moved my due date up to 4/6. They said it's because of the size of my baby during the ultrasound (at 15 weeks), but I think it's because they're using LMP instead of considering my IVF transfer date. They told me I was 28 weeks 4 days Monday, so I asked when I would be having the Gestational Diabetes test since that's usually given 24-28 weeks. "You haven't had it yet? That's strange. Usually you would have had it by now." You'd think they'd be on top of it considering my last baby was nearly 9 lbs, but I'm just another pregnant woman to them. Anyways, I took it yesterday. We'll see.

Over the weekend I went on a three day mandatory retreat with my classmates to a beautiful resort in Santa Cruz. I had a 180 degree view of the ocean from my suite with a fireplace and robes laid out. Unfortunately I rarely spent time there as we started early and went late each night. It was a type of business simulation competition among teams which I can only describe as similar to "The Apprentice" complete with all Type-A competitive personalities. Although I can lead, I don't consider myself a typical Type-A. Yet, what I can't stand is for someone to try to control me. It brings out a rebellious side of me that I don't even try to control. Let's just say that one particular German teammate and I went head-to-head. He became very flustered at my unwillingness to roll-over (especially a pregnant woman of all things), he actually told me once to "shut up." Them's fightin' words. And let's just sum it up by saying that I didn't. Actually, it made the whole thing a little more interesting as I didn't lose my temper but stayed clear-headed and kept a smile on my face. Nothing bothers a controlling person than the inability to break someone else. And I, my friends, am unbreakable.

My current dilemma stems with how much of school load to take this semester. There's a class I'm considering which ends March 31st, or in other words in perfect timing with the whole baby deadline. The class is Mergers and Acquisitions which is interesting but not exactly an area I plan to work in. The class is reputed to be very intense and hard work. There's 4 team projects in 10 weeks, and one is usually a lot of work. Tons of reading, cold calls in class, and it looks like there may be Saturday sessions with the GSI (graduate student instructors). While I normally do not back down from a challenge, this may not be the time. And I'm feeling like a wimp for not taking it on, for wanting to drop it based on the amount of work. I want to prove my strength, except I'm not at my best in this last trimester so there's a real fear of failure, especially at school where I try to stay my shark best.

So my plan is to prepare for and attend the first class. If I get a bad feeling, I will drop it. If I can't find time to prepare for it, then I'll definately drop it. Or maybe I'll just get over my ego and drop it anyways. Should I?

Maybe. Most Likely. I just have to get over myself.

Third trimester

2005-01-12T10:20:00.000-08:00

Here I am in the 3rd trimester. I can hardly believe it except for how uncomfortable I am. I don't know how I'll make it a few more months. I know that I will, but I know it will be no fun. I'm not very good at keeping track of my weeks or knowing which month I am since nothing is so clear cut (40 weeks does not equal 9 months except in pregnancy). What I do know is that today is January 12th, and I'm due April 12th, so that leaves me with 3 months left... thus 3rd trimester and start of 7th month. Right? Now, since I'll be having a c-section the first week of April, I've got less than 3 months left, and I'm glad because I want to hold him but getting anxious about not having everything ready for him.

Complaints:

Sciatica pain - This is sort of like a pinched nerve that goes from my lower back to part way down my left back cheek. It hurts when I walk or put any weight on that leg. Heating pads are my friends.
Out of breath - I carry this baby high, just like I did my daughter. My lungs are crushed. I'm constantly out of breath. I think it also has to do with dragging all this weight around. I just can't do things part way. I'm huge which doesn't help.
Pain on my left side. - This started last night. I think I cracked a rib coughing. It is a sharp pain, but I have a strong feeling it's rib pain and not internal so I'm not worried, just hurting, especially when I move. Forget twisting, turning, or leaning over on that side.
Cough - I've had this same cough since early December. I can't take anything for it so it just continues. I'm really tired of it. Really. Matt says the baby is getting shaken baby syndrome by all my coughing.
Flashing spots - I noticed this yesterday. I can see flashing spots in my peripheral vision when I'm in the bathroom or anywhere else where there's white walls. They flash in tune with my heartbeat. Doesn't hurt, just strange.
Constant kicks to my cervix - Only a boy would do this. My daughter never did. Please son, move on, I no likee.

Good News:

No contractions. No bleeding. This is good because it was at this point during my last pregnancy when I had premature labor and was put on bed rest.
Low blood pressure. I checked it in the grocery store. 96/56 which I don't think can get any lower. My blood pressure is low naturally which means I get dizzy easily but if it wasn't low I'd be more worried about seeing the spots.
No swelling. I had tons of this in my last pregnancy, so much so that I couldn't wear shoes or jewelry. I'm still wearing my wedding ring which is amazing to me.

So no medical emergencies, just normal complaints. Nothing I can't handle but I reserve the right to whine and complain as much as any fertile myrtle.

On other news...

Last night I got the itching to spend some money. I was feeling like I wasn't getting ready enough for the baby. I went to the baby store with the intent of buying a stroller. I checked it out and think I picked out the one I want. Or I thought I did. It seems like a good stroller with the car seat/carrier combined. Then I looked at the very expensive ones and couldn't help but wonder why they were so special. They didn't include a car seat but their styling was more modern. Is it style? Or something else? So I started doubting myself and thought about how I'd just have to store this giant behemoth a few more months anyways, so I didn't buy it.

So instead I registered. It may sound strange, but I liked doing it on my own instead of with Matt. He would have hated it anyway. I'm not going to have a shower, and probably won't tell anyone else I'm registered, but it was fun shopping for all the items and making an electronic list. It's very short because there's things I don't need and I looked mainly at the large items. When I handed it back in, they gave me back a long list of things I had "forgotten" to register for.

Meanwhile, I ended up purchasing clothes, especially undershirts and gowns. I'm sure I'll get some clothes from family as gifts before the birth, but I couldn't shake this panicky feeling that I'd bring this baby home with nothing to dress him in. My best purchase was a tiny navy sailor suit with matching hat. I understand now why so many mothers dressed their baby boys in sailor suits. It's the only thing nearly as cute as the baby girl clothes. Considering I'm doing his room in sailboats etc, I'm going to find if there's some way I could display this outfit in the room somehow.

Practical Pazel's List for Last

2005-01-10T09:38:00.000-08:00

This will be our second and last baby. There will be no more. Despite the fact that we've proven that we can't get pregnant on our own, I am planning on getting my tubes tied to make sure it doesn't happen. This seems strange. Birth control of any form has been out of our lives for so long that it's hard to get my mind around it.

So I've been working on a list of things I will be giving up by having my tubes tied:

Ever getting to become pregnant for free or naturally or by surprise. I imagine that there must be a certain sense of accomplishment with having achieved pregnancy without a syringe or team of doctors. I'd feel like a normal woman, one on tv or in the movies who feels a little sick and lo and behold is pregnant.
Each month getting my hopes up. Calculating due dates, thinking about symptoms, checking my basal temperature, and sometimes taking hpts. Then having them crushed when I get my period anyways. Kicking myself and calling myself stupid for believing that I could ever get pregnant on my own.
The chance to surprise Matt with a cute pregnancy announcement.
All visits to the RE. No more dildo-cams. No more tests. No more personal questions. No more wondering what they think of my half naked self. No more appointments in the middle of the workday. No more staff who thinks I'm too uninformed to be informed about the details of my test results.
Ever having twins or children close in age. Actually, this I can give up easily. I think twins are so cute together, but I know the realities of raising a child and my own limitations. I'm not that good of a mother, and definately not that organized. I'd end up mixing them up or losing one somewhere.
Spending all our money on infertility treatments. I think I may have already given this up as with purchasing the van and some other things, spending the money I had saved for a second IVF.
Knowing the exact day of my cycle at any time and tracking when we had sex in relation to that cycle. I want to give up baby-making sex altogether and go back to passionate love. Right now it's kind of hard with this huge belly in the way and the fact that I'm always tired or unable to breathe. But, I have grand hopes for our future. Hang in there Matt.
My excuse for not exercising as much as I should. I have big plans for getting back into shape after this baby. No more using the drugs and infertility stresses as excuses for gaining. No more using the possibility that I may be pregnant as an excuse either. And I will be able to take drugs that pregnant women shouldn't handle and drink wine whenever I want. Oh, I miss wine and sushi.
Ever feeling a baby kick inside me again after this pregnancy. Or bringing a baby home from the hospital or watching as he/she grows. Never again will I buy tiny baby girl clothes for my own daughter. This will be my last nursery to put together and my last maternity leave.
All the pains and discomforts of pregnancy. I could list them all, but considering this started as an infertility blog there may not be much empathy. It's okay, I can handle it.
An additional few more years of parenting and juggling more children. I am still trying to figure out how I could possibly give another baby as much love and attention as I give to Janie, must less trying to figure out how to do it with a third.
A third child. We'll never know what that child could have been like or what they could have added to our lives.
Feeling out of control as to the size and make-up of our family. When you're faced with primary infertility, you're constantly having to decide when to keep going or when to change directions or when to stop. Even after having a baby, then going through secondary infertility, there's the same questions again. Such an important choice as to family size and when to have children is taken away from us. Our bodies don't work right and we don't know what things will be like in 6 months or a year. The same? Different? I really want to be able to get that control back. Make the decision instead of having it made for me. Make plans for the future and live in the present.

So I'm about 99% sure that this will be our last. I hope to be 100% by the time I get to go time. Of course it all sounds so cocky of me to talk about this baby as if he's certainly going to be born healthy and fine. There are no guarantees. Yet, as big and uncomfortable as I am, I have to think that I am having a baby so that I can continue feeling that it's worth it.

Besides, all I'm taking away is the chance to get pregnant for free. Since I had to go through IVF anyway, if I suddenly got desperate for a third child, I would probably have to do that again. Tubal ligation doesn't take away that option, it just takes away the ups and downs of each month. Yes, it's that bad that I could get them tied just to feel normal again.

And it's more than that too. I am so grateful for two. To go back for thirds would be gluttonous.

With Pretty Maids All in a Row

2005-01-07T11:39:00.000-08:00

The maids just left. I love the maids. Just knowing that they're coming makes me clean up all the clutter and organize like crazy. I don't vacuum or anything that they're going to do, just make sure it's ready to be vacuumed. And they're here for just a short time and when they leave the house is clean and blissful. I just want to stroll from room to room admiring it.

When I was a kid, toiling over my chores, I would promise myself that when I grew up and became rich and successful I would get a maid. Well, I couldn't wait that long, so I started the service shortly after I became pregnant. It's not because I became pregnant, but because I can't do everything myself. I spend my free time outside of work going to class, doing homework, grocery shopping, doing laundry, putting toys away, spending time with Janie, etc that the house was not getting clean that often. If I spent my time cleaning toilets, showers, floors etc, then I couldn't do those other things. (And don't talk to me about Matt and chores. He's good at dishes, but he has never cleaned a counter in his life. He's stumped at the prospect of putting toys away because he has no idea where they go. He never vacuums, dusts or windexes either. But, his garage tends to be very tidy so I know he understands the word clean, just doesn't know how to apply it to the house.)

So, I did the next best thing which was hire someone. It was hard. I don't like having people in my house, especially ones I don't know. But it's two women who keep to themselves and work quickly. I stay out of their way and tip them well at the end.

The first time they came after I bought the crib and put it in the office, one of them went in there and looked at it and the bedding and started talking loudly and excitedly. I have no idea what she said since it was in Spanish, but it didn't sound happy. I couldn't help but wonder what it was. I had to wonder if she was infertile and did not want to be cleaning a nursery. How could I tell her that this baby was from IVF and that I didn't blame her? Then I wondered if she was talking about how much I must have spent on the crib and changing table. Since they look brand new, she probably couldn't guess that I bought them used. She could have also been commenting on my lack of design style, but I think they're cute and one of my better purchases.

Anyways, they haven't said anything to me about it, just to each other. I'll never know. What I do know is that I lurve them, as anyone would lurve another who would come into their home and clean it without a single complaint. May they be rewarded with a clean house of their own at the end of the day.