Tuesday, July 25, 2006

Slowest Moving Blog Ever

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.

Tuesday, January 17, 2006

5 Things

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

Wednesday, December 21, 2005

Pazel crashes

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.

Saturday, December 17, 2005

We're Home!

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.

Monday, December 05, 2005

Surgery

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.

Thursday, November 17, 2005

RSV Vaccine

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.

Wednesday, November 16, 2005

Sorry I've been MIA

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.