Monday, October 30, 2006

Shedding the encumbrances

Woody’s gaining weight, intelligence, and health. There are drawbacks to this, but the overall effect is that he’s becoming more and more baby like and less and less patient-like.

Health-wise, the big theme of the last week and a half is the shedding of medical devices and medications. We’re down to three medications, with the phasing out of Lasix (last Saturday the 21st) and then the Diuril (Saturday the 28th) and the potassium chloride, which was to keep the electrolytes up while the Lasix blasted them out of his body. So now all he’s on is his prophylactic antibiotic, which we hate because it’s so gross that he almost always barfs it up, his Prevacid (for the reflux), and the nebulizer, which is for his lungs. Also, we got the go-ahead to take him off of his monitor too, which is a relief because it is a major pain in the ass to deal with, and we’ve more or less gotten over the fear that he’d stop breathing in the middle of the night.

I mean, the only time he has stopped breathing, both in the hospital and at home, has been right after he ate, when he puked. As long as we’re not putting him to bed and then falling asleep immediately after, this isn’t very likely. And when we wake up in the middle of the night to feed him we’re not giving him the giant bottles that get him so full that he pukes anyway, so it’s not very likely that this will happen.

Our next big step is the oxygen. He is on such a tiny amount of oxygen—1/8th of a liter—that it’s almost not worth much to keep him on it anyway. Not only that, but there have been some isolated incidents where he’s been off the oxygen inadvertently for a while and he’s not shown any ill effects whatsoever (the doctors told us that if he’s getting oxygen starved he’ll thrash around a bit and get the blue nail beds and lips and gums, and he certainly didn’t look like that). This has led me to believe that he’s going to get his oxygen pulled after his next assessment, which is a week from Wednesday, I think. Once we don’t have to wrestle with the oxygen tanks anymore, he’ll be pretty much a totally normal baby.

Not that this is completely great. He’s been figuring out some of the normal baby tricks. His most recent one is that he screams bloody murder if you put him in his chair or in bed, even if he doesn’t need anything, just to coerce us into picking him up. You pick him up and hey presto! he’s totally fine again. Yesterday I was making some dinner, and I realized he was watching my loud and bright t-shirt. He had been pretty fussy before that, but for whatever reason he sure liked watching me move around. The next thing I knew, I was doing a little jig in the kitchen like that one scene in “Babe” where Farmer Hoggett dances around to cheer up the pig, and Woody was smiling and watching the whole thing. It’s amazing the silly things parents will do to keep their kids a little bit quieter.

This last weekend we had a very nice visit from Granddad and Mimi Hobbs. They kindly watched the kid on Saturday so that Maggie and I could go catch a movie. We are still not very worried about leaving the kid with trusted caregivers. I think it’s because we’ve been forced, from the first night, to rely on other people to watch him and to just let them do it, which has shielded us from having to call back home every half hour or any of those other cliché things that new parents do. It was sure nice to get out.

Tuesday, October 24, 2006

Defying expectations

Grammie went home this morning, after having done little with Woody but hold him for three days ("Mom, you tired of holding him yet?" "NO"). She mentioned to me on the way to the airport that Woody is, overall, in far better shape than she expected. I suppose it's only natural to think of him as a very fragile kid, and in some ways he is, but in terms of his day-to-day functionality he's pretty much a normal baby. He is beginning to react to things in a normal baby way, too, including following people with his eyes, recognizing his parents (ahem) and smiling when he likes things, which is just the best thing ever.

On the other hand, we have to be pretty careful to not take his growing strength for granted. Woody still has a strong tendency to puke, given his ongoing reflux issues, and when we don't give the proper respect to this fact then he will get us. On Saturday, for example, we had a small shower for family members (and a few friends) and I brought Woody by for a short unannounced cameo. Prior to bundling him in the car, I had this brilliant idea that if I gave him an ounce of milk prior to leaving that it would keep him full and sleepy for the whole trip. Ha.

Upon arrival, I was getting him out of the car and he promptly puked on me. Henceforth we* took him inside and he looked pretty addled considering that he just woke up and then had some vomiting. Overall a very good lesson that I will learn well-- don't feed the baby right before getting in the car (and this seems so obvious now that I feel really stupid even writing it. But it just isn't in the Baby Manual that we were issued!).

Anyway, we're happy with Woody in continuing to defy the expectations of his fragility, and we are really looking forward to his next oxygen assessment in a few weeks, when we hope he will be relieved of that stupid tube in his nose. He hates it, we hate it, and I don't think he needs it anyway, at least not as a matter of course. I'll keep you posted.

*We, in this case, was me and Nurse S, who was the only nurse to show up at the shower. I know that the other primaries wanted to come but had other conflicts, which is sad but understandable. Anyway, we weren't going to let anyone else touch Woody, because of germs and all, but we couldn't exactly not let Nurse S hold him, so we had her walk us in and out of the place where the shower was.

I love all of Woody's primaries, but have to say that there is a special warm place in my heart for Nurse S, who signed up the first night he was born, when everything looked so bleak. I will never forget that vote of confidence for Woody and for me and Maggie-- it's one of the most touching things that I've ever experienced.

Tuesday, October 17, 2006

Woody's wild night

A typical day yesterday turned into a not-so-typical night, as Woody decided to see if he could make us crap our pants. I had just finished giving him a big fat bottle (around 4 ounces worth, or about as big as he takes) when he decided to have a puke. This is not too unusual for him, frankly; he has at least some degree of hurling most days, and in fact I’ve become rather used to having to peel off my shirt after he soils it. My big fat Sooners hooded sweatshirt, by dint of being my favorite around-the-house shirt, has been hit no fewer than half a dozen times since he’s been home, for example.

He hadn’t puked at all yesterday, though, so we were feeling pretty good about it, and I’d even joked to Maggie that she had jinxed us by telling me that he hadn’t. So he upchucks, and then fails to breathe afterwards. This was a little scary. He went nearly completely rigid, and had this look on his face as if he was terrified and really wanted to breathe but couldn’t figure out how. We have had the training on reflux and choking and CPR, so even though it was scary we knew generally what to do: run around screaming and yelling and hope that everything turns out ok.

No, just kidding. In fact, the protocol is to administer some fairly vigorous back slaps on him to clear the airway, then make sure that his nose is clear, and then slap the back some more. If he is unable to make that work, then go to the chest compressions. As a last ditch effort, try to breathe for him. After two cycles of the back thrusts, he started trying to breathe again, and when I put the nasal syringe up his nose to clear any milk, he got irritated enough to come back to life and let out a lusty cry. By this time, however, Mag had called 911 and we had the paramedics on their way.

The real upshot of this episode is that we know how quick the paramedics get to our house: really quick. In fact, I was putting on a new shirt (natch) as they walked into the house. They did a quick check on him, said that he was generally ok, but advised us that we had to take him to the hospital to get checked out. So we saddled up and went back to Unnamed Hospital.

By this point in time, I was over the immediate fear of Woody not being able to breathe and was onto the immediate fear that the hospital was going to try to keep him again. After all, he’s only been home for 18 days, and I am not interested in the slightest in giving him back yet. At the hospital, this translated into (I am not kidding) clutching Woody to my chest and refusing to let anyone else, including Maggie, hold him. I also tried to get her to change the consent forms to “we consent to his treatment ONLY IF you promise not to keep him”. The nurses and the doctors examined him while I was holding him—I didn’t want him to be afraid or mad by strange people holding him or poking him. Much.

We’ve been made a little … cavalier in our attitude toward the hospital, though. As evidence, consider the following two things that happened while we were in the ER room. First, Maggie picked up the house phone and called the NICU to see if Nurse S or Nurse M were on duty so that they could hang out with us (neither was there). Second, we’ve been watching Grey’s Anatomy on DVD via Netflix since Woody’s been home, so we know that all the ER residents are all sleeping with each other (it is a reputable source for information, right? They wouldn’t mislead us, right?). So when the resident came to talk to us, I almost literally had to bite my tongue from asking him which one of the nurses he was boinking. I am so glad I didn’t ask though, because I think he probably would have been offended.

In the end, the only thing that happened was that he got a new x-ray to make sure he hadn’t given himself a little chemical pneumonia by aspiration, and when they confirmed that he didn’t, they let him go. I was very relieved, and so was he: in fact, later that night, he was hungrier than I’d ever seen him. It goes without saying, though, that my sleep was wrecked last night (Maggie’s too, probably) so I’m pretty darn tired. Still. And to make sure I was REALLY dehumanized by the whole experience, I had to go to the hospital with a sizable amount of Woodypuke IN MY HAIR. Which wasn't so much fun.

After all that, though, Woody’s doing great, though, and he’s now almost 11 pounds (10 pounds 10 ounces). So I'm just hoping he stops trying to freak us out.

Monday, October 16, 2006

Easing into "routine"

Woody's still a very monitored baby, considering that he's home from the hospital. We get calls on a daily basis from the hospital, the school district (they have early childhood development people), the health care supply company, and from Child Protective Services* (kidding) about how we're handling the peanut. At the end of last week, Maggie got a call from one of the followup NICU nurses asking how Woody was doing. It had been a very difficult couple of days, so Maggie went into a rant about how he won't sleep very well and he spits up after many meals and is generally a pain in the ass, and then the nurse said something along the lines of "is that all? I've been dreading making this call all day!"

See, Woody is mostly just being a normal little kid, as opposed to being a holy terror or having lingering health issues that make his existence difficult, I guess. The nurse told Maggie that most of the 23 week preemies don't have a very good time when they are released, and some sizable proportion of them wind up back in the hospital within a week or two. Which makes us feel a little better.

In the meantime, we've been slowly getting into a routine, where Woody has been sleeping, more or less consistently, from around 11 at night to 2 or 3 in the morning, and then asleep until 6 after that. This is really tough for the sucker who has to do the 2 or 3 shift (the hell shift, I call it), but for the other one of us it means that we can usually count on 6 hours of sleep or so. Which ought to be good enough, except that it never is considering the sleep deficit we're both running. I know it's a total cliche about new parents' sleep deprivation, and it is not one that I was ever very sympathetic to, but it is not an exaggeration to say that it can be just devastating to your thinking and productivity.

Fortunately, we're looking forward to some great visitors over the next couple of weeks, and we're going to be using their lack of familiarity with Woody to our advantage. Grammie, for instance, just wants to get her hands on "that baby" and because of that I'm sure she will not mind holding him and feeding him and burping him and changing him while we, say, pass out for a few hours.

We're still having a great time with him, though, and despite my complaints we really love having him here.

*Our latest joke with no taste, a la the blood pressure of "180 over preeclampsia", is that they're going to call CPS on us if Woody, say, doesn't gain weight over a week, or cries too much during a visit from the home health nurse. Yeah, pretty funny stuff.

Monday, October 09, 2006

Your conventional wisdom is crazy.

Woody's like a normal baby on steroids. Actually, Woody is JUST like a normal baby on steroids, considering that he still is being administered the steroids to help out his lungs, but that's not what I'm talking about. No, I'm referring to the fact that all he does is eat, poop, and (very) occasionally sleep, and is utterly immune to reason ("Woody, can you just give your mom and me FOUR HOURS of uninterrupted sleep? I promise we'll do many excellent things that you'll love later!"). In addition to these items, which are the typical ones that make Grandmothers cackle, we have some extra special Woody-specific issues, that make taking care of him a special challenge. For instance, the fact that the oxygen tubed in through his cannula is incredibly dry, which cracks out his nose and gives him nosebleeds. Or the fact that his hernias make him constantly constipated and sometimes visibly so, which makes him pretty angry. So Woody is a particularly difficult new kid, I think, although he's so darned cute and innocent it's not like you can get mad at him.*

The big problem we've had with him is that he just declines to sleep at night, preferring instead to sleep well during the day and then not at night. Worse, he taunts us by falling asleep easy as pie-- as long as we're holding him. As soon as we put him down and try to sneak back to bed, he's up and fussing, and we have been thwarted again.

Maggie and I have, like many new parents, thought about kids and kid issues for years. I realized over the weekend that many times when discussing these issues with other parents, we've been told something like "well, wait until you're parents, and you'll change your tune.". This conventional wisdom is, we agree, still crazy. Three examples below.

  • Item: kids in restaurants. Maggie and I have thought for a long time that it's pretty rude to bring small babies to restaurants. We cringe when they cry, we are unhappy about the disrupting effect on the other patrons, and we can't imagine why it's doing the parents any favors to not enjoy the meal and instead pay attention to the brat. But people tell us when we've complained, "oh, wait until you're a parent. You'll want to bring them out too." Our thought?

    This is crazy talk. We have no interest in bringing Woody out to some awesome restaurant. Sure, I can see exceptions to this rule, but why ruin a meal for everyone by bringing an infant? I just don't get it.

  • Item: not being able to leave the kid behind. It's a total cliche that the first time having a babysitter is really tough on the parents, and they put it off for weeks and then call home fifty times to make sure the kid is fine. We've always thought this is strange, and that when we have a kid we'll be totally fine with having a babysitter. But people tell us that we'll change our tune when we have a kid. What do we think now?

    You people are crazy. We're ready right now to go out and leave the kid behind. Anyone want to babysit? I mean, I hate to make too light of this, but having a small, demanding semi-human messing with your ability to interact with adults and otherwise have ten minutes of uninterrupted relaxation is incredibly tough. Come on down, he's really cute.

  • Cloth diapers. We've always thought they feel better, look better, and are at least environmentally (and cost) neutral, if not net beneficial, over using disposable. Yet people for years have told us that we'll never keep using cloth diapers. In fact, at least a half dozen nurses at the NICU told us 'you won't keep up with it a week,' and otherwise poo-pooed (pun intended) our desire to put Woody in the cloth diapers. Well, it's been more than a week now, and what do we think?

    Crazy talk! It's not ok to act crazy. Cloth diapers are still better looking, better feeling, and are easy as pie to use. We don't see any reason to give our money to Big Diaper, and will continue to put the good stuff on Woody.

In short, maybe we're the odd ones, maybe the people who have been talking to us for years are. And it is certainly well within the realm of possibilities that both possibilities are true. I certainly guarantee that if Woody doesn't re-arrange his waking pattern soon, Maggie and I will both be getting great sleep in a padded room.

*After two straight hours of him not sleeping, at 4 this morning, I went and begged Maggie to take over and let me get some sleep so I could go to work and be something resembling "productive." She got up, grumbling, but when she went into the living room and saw Woody sitting in his bouncy chair staring at the light fixture, she just busted out laughing because he was so cute and ridiculous. Which is the way it goes.

Monday, October 02, 2006

Free at last

Woody's home now, and seems to be settling in nicely. That first 24 hours is, as most parents will probably tell you, a terrifying and profoundly uncomfortable time. Woody didn't want to sleep, and he was just cranky and uncooperative in every way. By the next morning Maggie was telling me "I don't know if we can do this" and I was having to do everything to assure her that yes, we can make this work.

And my bravado seems to be more or less true; Woody's twitchiness that first day seems to be mostly explained by his being unused to his new surroundings here. As he's gotten more used to the different sights and smells and sounds and bed, he's getting more and better sleep and has been eating and generally a lot more pleasant. I called my mom (Grammie) on Saturday and issued the complaints we had against Woody (he's not letting us have any sleep, he's being fussy all the time, he's puking when he does eat, which is not often) at the time. She had this reaction that I can only describe as "cackling", where she chuckled about how sucky it is to be a new parent and told me about how every baby does this and I did this and how we should just suck it up. When Maggie called her mom that day, I could hear her doing the same thing over the phone. I have come to the conclusion that the Grandmother Cackling is probably an experience that is common to most new parents, where we call our mommies and our mommies delight in the comeuppance that has finally been delivered. I wonder if in 25 or 30 years (not before that, son) Woody will call Maggie and get the same sort of treatment.

This weekend Mag and I took Woody for his first walk. We loaded him into his massive Radio Flyer wagon (along with his oxygen and his monitor) and wheeled him to the park. It really made me feel great to see him fascinated by the colors and sights of normal life. He never felt the wind on his face until Saturday, and he definitely noticed it.

Maggie and I are on a divided responsibility schedule for the evening cares; she handles everything before 2 am and I handle everything after. As long as I get into bed by 10 or so, it seems to work out great. 4 hours guaranteed plus another couple of bonus hours in there ought to be enough*. I figure I'll sleep when I'm dead.

So now I'm back at work, and Maggie's taking some leave to hang out and take care of Woody, and she's not sure she can co it, but I have eminent faith in her. It's a strange time to be sure, but it's really fun so far and we're having a great time.

*As George III is supposed to have said, 6 hours is good enough for a man, 7 for a woman, and 8 for a fool. But then again he was crazy.