Friday, May 27, 2005

More Work Panic

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?

Wednesday, May 25, 2005

Another adventure of the bad mother

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.

Monday, May 23, 2005

More home thoughts

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?

Wednesday, May 18, 2005

Our first week

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.

Wednesday, May 11, 2005

HOME!

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.)

Thursday, May 05, 2005

Day 25 in the NICU

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.

Monday, May 02, 2005

More Guilt

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.