Monday, July 31, 2006

No more surprises!

All of the bad test results that necessitated the move back to the ventilator seem to be reversing themselves now. His bicarb, which was 45, is now down to 36 (not great, but much better). His blood gas CO2 is now in the low 70s (we'd like to see it lower, too, but that's not a big deal). The chlorides, which really precipitated the whole crisis on Thursday when they dropped to 89, are now back up to 98 (100 to 105 is normal). Nothing else seems to be looking too bad now. Well, except...

I managed to make rounds this morning, and wound up giving a short speech to the collected health care professionals that amounted to "we felt surprised with how quickly things went south last week. I worry that it was because the doctors and nurses sugar-coated what was going on. I don't want to feel like that again, so now is your chance to tell me anything else that's worrying you that I don't know about."

This gave them the opportunity to tell me for the first time that Woody's echocardiogram revealed something odd. You know, that echo that was taken on Friday to see whether he had evidence that the right side of this heart was being overworked. Yeah, the one that they told me showed good news. Anyway, so there is evidence of an odd blood vessel going from his aorta toward his left lung. It could well be nothing, but there is also a chance that it could be diverting excessive flow from his aorta towards his lungs, which could be the explanation for why his lungs aren't healing up as quick as we would like. They didn't say this, but it could also help explain some of his CO2 purging issues too, as I understand how the circulatory system works. So the next step is that the pulmonologist and the cardiologist will be ordering more tests and we will see if this is a big deal. Of course, the only way to address it is surgical, so it will need to be a fairly thorough evaluation first. On the other hand, I am not too worried about this for two reasons. First, Woody is now approaching five pounds, and is far bigger and stronger than he was when we were discussing PDA surgery, back in the first through third weeks. Second, I am in favor of addressing any major health obstacle that he has, and am in some ways hoping (perversely, maybe) that this is the problem, just so there is a single large factor that we can focus on. We will see.

Speaking of focus, Woody's eye exam today reveals that he has stage I Retinopathy of Prematurity (ROP), in zone 2. This is apparently a fast moving version of the disease, and may require surgery later. He will be re-evaluated next week. So anyway, more stuff to worry about, but he is doing well overall, and is starting to wake up and be feisty again, which I like.

Sunday, July 30, 2006

Looking ahead, again

Woody is getting comfortable again. He was really tired out by the effort of trying to keep his system in line, and all last night he slept like, well, a baby. His blood gas tests last night and this morning confirm that he is doing better. His CO2 dropped into the low 70s and his bicarb reading is inching down steadily as well. He will have a full battery of metabolic tests tomorrow morning, so we can get a systemic view of what's going on with his electrolytes and other kidney function diagnostics.

He has a couple of anti-anxiety meds prescribed for him in order to keep him calm and not fighting against the tube, but he hasn't needed any since yesterday, mainly because he's just worn out. His first blood gas reading after the reintubation showed that his CO2 was still going up, which a specialist (a pulmonologist, to be specific-- you'll be seeing a lot more mentions of them coming up) said means that he was just worn out and had no pulmonary reserve left, a process that we've now reversed. The failure of this extubation attempt makes me realize how stressful these things can be. While we knew that there was a substantial chance of not making it on the first try*, it doesn't really make it any easier to see him re-intubated again.

So, two things-- first, what went wrong here? Second, where do we go from here?

1. What went wrong? The short answer is that Woody just wasn't ready to make it on this attempt. He didn't have enough workable lung tissue to be able to keep his CO2 levels in check, even though he did seem to be able to keep himself in enough oxygen to stay comfortable. All his processes are interrelated, though, and the more his body's chemistry got out of order, he was unable to recover for himself using his compromised lungs. A little high CO2 is one thing, but when he was unable to manage that in conjunction with his too high bicarb rates and his too low electrolytes, he had to be reintubated to take the pressure off of his life support systems and let him get rested, grow more lung tissue, and make another attempt.

It was a frustrating week for us, because we saw first his apparent progress in being able to do well on the cannula, but then we also saw his continued worsening on his tests and it seemed like the doctors didn't have any answers for it. His high bicarb rate, for example, appeared to go unaddressed even though we knew there was a drug that could have potentially lowered it; his bicarb rate is also driven up by the use of the diuretics, but because his lungs were still so 'wet' they couldn't or wouldn't back off on the use of them beyond the attempt to go every other day on the lasix last weekend, which was also a source of frustration because if he really couldn't handle being taken off the lasix, why did they try that at the point that he needed to keep his lungs as clear as possible to keep purging his CO2?

Speaking rationally I don't think that these things, though, had anything really to do with Woody's inability to stay extubated. The bicarb lowering drug itself could have further taxed his already stressed kidneys; trying him on every other day lasix could just as easily have lowered his bicarb readings and bought him another couple of days; and even being on the lasix then probably wouldn't have kept his lungs clear enough to let him make it on his own. I really do feel like he was given every chance to succeed, and I don't feel like he was intubated lightly.

2. Where do we go from here? At this point, Woody's developmental progress has to figure strongly in our decisions on how to approach his respiration. The danger of leaving the tube in includes giving him a strong oral aversion; we need him to be able to learn to suck and feed on time, and so we can't have him be intubated indefinitely. On the other hand, it would be nice for us to not have to go home with a tracheostomy, because that would extend his time being supported with artificial respiration well into his first year of life. But obviously, if he needs it, he needs it; apparently one of the mantras of the pulmonologists is that 'we don't care what machine he goes home on; we care what bus he goes to school in.' In other words, we don't want to compromise his development in order to keep trying extubation over and over again.

Woody will get at least one more try on the extubation, at 36 weeks. If he doesn't make it then, we will probably give him another attempt as long as it can happen before his due date (~September 9). For the next week and a half, we'll let him rest and build lung tissue, and maybe that will be all he needs. After all, he made it over two weeks before needing the re-intubation, which tells me that he was probably pretty close. But we'll stay on top of it. Thanks for the support!

*I will note here for the record that I commonly referred to this as "Extubation attempt I" in previous entries, so if you go through the archives and see that written it was not, in fact, one of my retcons.

Saturday, July 29, 2006

Back to the tube

Woody's gas tests were fully bad this morning, with bad CO2, bad electrolytes, bad bicarb, the works. As a result the medical team thought it best to re-intubate Woody, and so the first extubation attempt comes to a sad close. I have been trying hard today to keep Maggie on an even keel, but it's even harder for her than me because all this happened while she was in Arizona trying to relax (it's pretty hard to relax when your kid's having trouble).

After getting re-intubated, he got an X-ray that shows that his lungs are generally doing more poorly than we'd like, which is also suggestive of his just generally being unable to keep processing the gases like he needed to. Also, when a baby has consistently high dissolved CO2 in the blood, it can lead to a sort of narcosis where he would not be able to react well to anything and would have his senses dulled and be unable to process signals from his body to keep other things in check, so it was important that he not be allowed to get to that point.

So, let's review. As I told Maggie, he's not in any immediate danger. Woody's health issues are all of the chronic/long term varieties, and just because he was getting into bad ranges of the various tests that I refer to does not mean that he is now or has ever been in any risk of dying as a result of what we're dealing with. Second, this does not mean that Woody is not going to be able to do another extubation attempt; it doesn't even mean that he won't be able to try again fairly soon. If he recovers well and can build some new lung tissue, we could make another attempt at extubation in a week or two. Finally, while we are both worried by and mindful of the possibility of needing a tracheostomy to deal with his ventilation, we aren't to that point yet. Woody will get another few weeks to evaluate where he is/was and what could make him do better with his breathing, and we will take it from there. Also, he really could be doing a lot worse. Even considering his BPD/CLD, he is still towards the exceptional end of 23 week babies, and his neurological and digestive performance remain outstanding. In the long run, he'll be fine; we just have to find the right path to get there.

So yeah, it sucks, but it's just reality and that's what we have to deal with.

Friday, July 28, 2006

Readying the sharp sticks

So here's the deal. Woody's CO2 readings are bad still. His 'bicarb' readings are bad too, as a result of (among other *waves hands* reasons) because of the diuretics they give him (like lasix) in order to keep fluid from accumulating in his lungs. The bicarb is, like sodium bicarbonate-- baking soda-- a basic compound, so his kidneys try to keep his blood pH steady by retaining extra CO2 for its acidotic value (counteracting the alkylotic properties of the bicarb). The more his CO2 remains in his blood, the more he has other problems, including:

  • making his right side of his heart work harder in order to keep the blood exchange happening in his lungs;

  • possible negative changes in the blood vessels in his lung bed;

  • possible delays in growth;

  • messed up electrolyte levels in his blood, as his kidneys keep messing with the nutrients they keep;

  • ...which can lead to heart arrhythmias.

which is all bad. The really frustrating part is that measuring Woody's success or failure on the extubation can happen on a lot of levels. On one level, he's doing well in keeping himself oxygenated. But on a deeper, systemic level, he seems to be having some fundamental problems in keeping his CO2 adequately purged. (We continue to be straight on the connections of everything, right? Bad lungs-> need for lasix-> bad effects on the kidneys -> messed up electrolytes/bicarb -> retained CO2 ->bad stuff. of course, you also have Bad lungs-> retained CO2, etc., so the links are never as easy as 1-2-3.)

There are, of course, some other possibilities for many of the symptoms that are bothering him. First, his bad electrolyte reading could be an anomalous outlier, caused by a double dose of lasix given to him the night before that test (any diuretic can alter your electrolytes). Second, his hemoglobin levels have been low for two weeks now, but because the doctors wanted him to be making his own red blood cells, he wasn't given a transfusion even though prior to then those test readings would have triggered one. Extra hemoglobin means that he would be able to move oxygen around his body easier, thus making him work less hard overall, which could be very helpful to some of his body functions measured by the disappointing tests. Also, his occasional arrhythmias could themselves be caused by his anemia. Finally, he could also be a little sick himself, considering that both Maggie and I have been sick in the last month (although the doctors have officially pooh-poohed this suggestion).

I really, really really don't want to see him re-intubated. I have joked around to nurse J that I will be barricading myself in his room with sharp sticks to poke anyone who threatens this course of action. She pointed out it would get me arrested, but I reasoned that at least I could delay the action.

I won't let them do anything drastic, but it's pretty discouraging to go from the nasal cannula to talk of re-intubation in two days. I hope the transfusion turns everything around and that all looks great by this evening. Thanks for the support.

Thursday, July 27, 2006

A minor setback

Today was one of those days that reminded us that Woody's time in the hospital is not just, well, fun. Let us begin with the reminder that Woody has a diagnosed nasty condition, namely bronchopulmonary displasia, or BPD. It is better known as chronic lung disease, and it is characterized by lots of scar tissue and nodules in the lungs, as they have been thrashed by weeks and weeks of artificial respiration and, well, regular respiration, because a kid just ain't supposed to be breathing at 23 weeks and so forth.

Woody got moved back from the high-flow cannula to the CPAP today, because in addition to his normal marginal-to-high CO2 test result today, he also scored low in his blood electrolytes, which is suggestive of his kidneys being overtaxed by the effort of making his blood pH acceptable (that's simple, right? We all understand the interconnection of dissolved CO2 and electrolytes and metabolytes of carbohydrates and stuff, right? Okay...).
To sum up, today seemed like all the old banned words were making a comeback.

"His lungs sound really wet."
"Well, you know that this time in the NICU can be a roller coaster ride."
"His lungs just still look like white out when we see the x-ray."
oh, and my favorite:
"It's times like today that we remember that caring for him is an art and not a science."

(My response to this is "well, that's true. If it was a science then we wouldn't be adjusting two variables at once. If his lungs sound wet and he has a chloride shift, why not change his lasix or his breathing apparatus, and not both? Now it will contaminate any lessons you'd learn from either of these changes, and not know whether to credit/blame either one of these inputs if he gets better/worsens.")

Maggie happens to be out of town today. She left on a plane to Phoenix, where her friend Honorary Auntie Mary (who called Woody in utero "Raoul") took her on a free travel agent jaunt, a junket if you will. Right before leaving, she went and got her blood pressure checked and then saw Woody right after he'd been put back on the CPAP. I assure you, the sight of Woody with more equipment back on his face did nothing for her blood pressure. But she is gone, now, and with any luck she's getting plenty of relaxation at her spa.

To tell the truth, Woody's setback isn't a big one. If he's in need of a little extra respiratory support, of course I want him to get it. And he does seem to be responding nicely to the CPAP: his O2 needs have been steadily declining all day, and his heartbeat and breathing rate are similarly going down, which basically means that he's not working as hard to breathe. Of course, the elephant in the room with all this stuff is that if he doesn't figure out a way to keep getting his CO2 out of his blood the hospital staff would have to re-intubate him, which is not what I want, because he will hate it.

I will continue to watch him and make sure he's improving. Tomorrow morning's blood gas test is going to be a pretty big one.

Wednesday, July 26, 2006

Play time with Woody

As Woody gets more healthy, we have now begun to get over the fear of easily breaking him. I remember the first time I held him, I positioned myself in the chair and then was afraid to so much as move for fear that I'd dislodge his tube or something. This fear was reinforced when, the second or third time I held him, he had some kind of issue that made his nurse believe that he had extubated himself, and pressed the nurse assist button.* Within seconds there were twelve or fifteen nurses and NPs and doctors in the room, and I was crowded over to the corner rocking myself gently and saying "what did I do?" It turned out to be nothing, but the connection between "me holding him" and "near disaster" was pretty well established.

After he moved to the crib, and especially as he sheds more and more ventilator equipment, however, it's getting easier and easier to play with him. No longer do we always have to have a nurse assisting us when we pick him up, and it's now possible to even pick him up and just hold him (a trick, I admit, that I've not done myself without supervision. Old habits/associations die hard...). The nurses in general are a lot more easygoing with us doing stuff, although they do look askance at me when I press buttons on the equipment (this is a joke. I do not do this, o lawyers and risk managers and other hospital staff that monitors this site).

The last week we've even started giving him his bath, which is an awesome time to play with him, because he stays very awake. I know a lot of his photographs show him awake, but in reality he sleeps much of the day, and it's kind of a rare treat to see him awake and alert for any time at all. The more we do this, the more we feel like actual parents, and it feels good.

*And now here's the part in the Woodyblog when I begin to repeat myself. I have this sinking sensation that I already told this story when it happened, but oh well. I hear that being a parent makes one scatterbrained.

Tuesday, July 25, 2006

Widening the circle

When you've been coming into the NICU for as long as we have, not only do you start to know the routine, you get to know most of the people that are here. To enter the unit, for example, you have to pick up a security phone and get buzzed in by a staffer sitting at a desk inside the unit, who watches you through a video camera as you're standing there (during business hours, there's actually a greeter at another, closer desk). After I figured out that they could see me standing there, I started getting a little goofy with the intro. This usually consists of doing nothing more stupid than smiling really huge directly at the camera. Most of the time they buzz me in even before I can say or do anything. If I'm holding a vial of breast milk, sometimes I hold it right in front of the camera as if it's my hall pass. It gets the point across, even if Maggie is mortified with embarassment.

This morning we abused our familiarity a little bit, as we were able to get one of Maggie's former co-workers in before regular visiting hours begin (this was just a technical violation of the rules, though; it was around 8 and the visiting hours start at 9). All involved just kind of pretended not to see her. I am always glad to get people in to see Woody, both because I think he's adorably cute, but also because I am curious to see what people's reactions are going to be. Early on, the visitors we had in seemed visibly intimidated by his size, by the leads and IVs and pumps he was connected to, and the environment in general. Hell, I was intimidated by seeing him at first. I remember how small he was when they pulled him out of Maggie, and I was nearly terrified to go in and see him the first time, because he looked somewhat like an alien. I've said this before, he was cute then, but you had to kind of look for the cuteness. Now, though, he's gotten to be a little chubby baby. He's gained about five inches in length and is over triple his birth weight, and since he fits into preemie clothes he's very fun to dress.

At this point he just about has more clothes than he can really use. Grammie told me she and Auntie Val went shopping for him the other day, and I told her that he didn't really need any more clothes, and she just said something about how everyone else gets to buy him clothes and she wants to too. Fine, mom. You can do that. But I can see how this is going, which is why Maggie and I are now in the process of getting registered for Woodygear on and a local baby shop. Details are forthcoming, for those who desire to get stuff for him.

Thanks for the support. We really appreciate it.

Monday, July 24, 2006

Glacial progress?

I had typed up the first part of this post earlier today, but Blogger went and had a massage, and I was unable to post it. But a funny thing happened on the way to the publishing...

Woody's progress seems to be glacial to me. I made rounds today and the doctor told me that he continues to not exactly make huge improvement in various things; i.e., his CO2 is better but not TOO much better; his O2 needs are down but not MUCH down; he seems to not be any worse with his BPD (chronic lung disease), but he's not any better either; and in general it seems that every day is beginning to melt into the day before and after it, as the routine piles up as do the days.

The only comfort I really have is the continual reminding myself of how bad things could be. He could be making negative progress. He could have brain bleeds and the neurological problems inherent with them. He could have necrotizing (tubeguts-itis) colitis. He could have already been re-intubated. On the other hand, there are also continuous reminders of how much easier others seem to have it. I had a conversation with a woman yesterday about her grandkid. She looked tired, and so first I buttered her up by asking her if her child was in the unit, which she thought was a great compliment. She told me that her grandchild had been here since last Thursday, and she just wanted to be able to take him home. This, of course, is the point that she asked me how long my kid had been here, and when I told her "seventy three days" she just looked horrified. "Oh, you poor dear," she said.

Don't get me wrong, I am not complaining. The first couple of weeks, when things seemed like they were so scary, Maggie and I would talk to each other on the way into the hospital about how all we wanted was for things to be the same. "Just not any worse!" we would say to each other. So, yeah, we want things to get better, but as long as he's gaining weight and is still extubated, he's doing well.


So, Maggie and I were out at dinner tonight, and decided to stop by to see Woody (and nurse S, who we hadn't seen in awhile), and an incredible shock met us at his room-- Woody's off the CPAP. And he's not ON the ventilator, either. Woody abruptly graduated to the 'high flow' nasal cannula, which is an even less invasive breathing assist than the CPAP.

Apparently, nurse M2 switched him over to a regular cannula while doing cares this afternoon, just to give his face a break from the CPAP straps, and he was doing so well that she asked if he could just switch permanently. No, was the reply, as he is still in need of respiratory support, but they were willing to try the high flow varient, which provides an EEP of ~4 (compared to his order of 7 for the CPAP). Even though his O2 needs are up compared with where he was on the CPAP (he's hovering around 70), you also have to take into account the fact that he's not getting the full EEP, and he's also breathing in some extra room air, so who knows how much O2 is actually hitting his lungs. It's another giant leap forward, is what it is, and it utterly makes a mockery of my earlier complaints. Well, I'll take it!

Sunday, July 23, 2006

Measure twice, diagnose once

Life at the hospital has reached a sort of steady-state of routine and expectations. Gone are the acute fears walking in each day and being worried that some sort of life-threatening complication would have popped up overnight, although I still call every morning to make sure that there will be no nasty surprises when we first see him. The staff knows that they shouldn't call us unless it's something big, because there's nothing more unnerving than a call from the hospital. I remember sometime in the first week getting a call at 11 at night from a NP over a change in a pressure setting on his vent. In retrospect, this seems unbelievable. Why would you call about something like that?

The more I think back about some of what has happened, and then talk to other friends who have had pregnancies recently, I have become convinced that doctors and nurses are unaware of the psychological trauma they inflict by tossing off potential diagnoses. A couple who are friends of ours, for example, had a scare in their recent pregnancy where a preliminary blood test indicated a greatly increased chance of certain neurological and developmental birth defects. For a week they agonized about what this meant for the future of their child, imagining the repercussions to their dreams and aspirations. A week later, upon going for a follow up, it was discovered that the first abnormal test result was due to a mathematical error in calculating the acceptable results for the baby's gestational age and not to a discovered defect. Oops! I also heard another similar story involving a bad initial measurement in an ultrasound; for a weekend they had to consider all the bad scenarios, but when they had the followup testing, they found that the original test results were wrong (and worse, they found that the supposed "marker" for the defect is not a reliable one anyway).

I definitely appreciate the emphasis now in giving patients all the information out there, but don't know how you can go out and face a couple of parents without double-checking your math, for example. Don't they know how much it freaks people out to tell us, well, anything? Even hearing the term "tracheotomy" had me a little juiced.

Woody continues to do well. He's up another 10 g to 1820g today. We're hanging out with him and holding him and generally playing with him. Maggie has had a pretty bad cold this last week and has had to stay away from him, so now that she's doing better we feel better about spending more time with him.

Friday, July 21, 2006

Thinking long term

It's day 71, and we've had our first visit from a person we are most happy to meet: Woody's discharge coordinator. No, his release from the hospital is not imminent. But we are beginning to understand what the conditions have to be to allow him to leave the hospital. First, his weight has to get above a certain sliding threshold (which is generally somewhere around five pounds). Second, he needs to be breathing on his own (although some babies do go home with supplemental oxygen, which remains a likely possibility). Third, he has to be feeding on his own, which he still is not doing (and won't until he gets off the CPAP machine; the air that it forces into his body makes his own suckling problematic because he'll swallow too much of it as he feeds). Finally, he has to be tested in order to confirm that he's stable enough to leave.*

The very fact that we're thinking long term like this has Maggie and I very excited. It's one thing to know that he's doing well. It's another thing altogether to know that he's doing well enough to where we can think about the day when we get to take him home and actually be real parents for the first time. And he does continue to do well. As of today it's his ten week birthday; he is 33 weeks 2 days gestationally, and he has been off the ventilator for a full week. While his oxygen needs are not coming down as quickly as we would like (he usually sits in the 50-60% range for O2 needs), the fact that he appears to have made it on his first extubation attempt as such a young preemie, especially after being born so incredibly early, still is very good. Also, he continues to gain good weight, being up to 1790 grams today (which is 3.94627449 pounds!). We are very proud of him.

Okay, three housekeeping matters. First, I want to make it absolutely clear that I was NOT calling people out on the Wednesday post about friends disappearing. Truth be told, I was venting about three people I know in real life who have disappeared since Woody's birth. Even these people I hold no grudge against-- I know it's hard to initiate contact in such cases, and I'll just bite the bullet in the next week and call them myself. So no, I wasn't talking about YOU. Second, I did post a hugely long screed yesterday about ethical issues surrounding the care of preemies. It's there primarily as a placeholder for myself to remind myself of how I'm thinking about such things, and I do not expect any of you to actually read it. Finally, I want to specially thank the Crows, who sent us an amazingly nice package of stuff this week. Maggie and I are incredibly touched by this, and we really appreciate it.

*I asked the discharge coordinator at which point we are tested to ensure that we are qualified to take care of him. She thought this was somewhat amusing, I think; I wonder (not seriously, to be clear) whether all parents should be licensed before being allowed to procreate.

Thursday, July 20, 2006

A gonzo whopper of a moral dilemma

DISCLAIMER: There is almost nothing specific to Woody in this post. It collects some of my imperfect thinking on the ethical issues relating to Woody and other micropreemies, and is eminently skippable.

Some brave people have suggested to Maggie and I that our experience with Woody must have changed our thinking on issues involving fetuses and the law-- i.e., the supposition that we have (not to jinx ourselves-- let's say "so far") saved a 23 week premature baby must have made us rabid pro-lifers. This is not true, although I would definitely be lying if I said that our experience with the kid has not complicated our thinking on both beginning and end of life issues. As far as I think about the legal/ethical issues, there are a few things our experience has illuminated. First, the ethics of caring for high-risk patients is a morally troubling area, and it's true that being close to the issues makes one pay a lot closer attention than before. Second, the most complicated moral and ethical dilemmas that I see involve choice of care, where decisions to benefit one (or more!) person(s) can negatively impact others. Finally, the primary mistake that I think the most sanctimonious commentators on such issues make is the assumption that all of the lives at issue have a simple and binary value, when life is necessarily a lot more complicated than that.

A) I will freely admit that prior to our experience dealing with Woody, I was more comfortable thinking about the issues of dealing with high-risk patients and of even witholding care. For example, a few years ago a group of doctors in Britain began calling for a bright-line deadline of 24 or 25 weeks before trying to save a premature infant. While this seems morally questionable, let me be clear that most hospitals have some kind of guideline for when it's too early to try to save a patient; our hospital has a general rule that babies born before 23 weeks are not saved, and Woody only made that by two days (and if Maggie hadn't received excellent care in the week prior, he probably wouldn't have even made it that far). The risks for the preemies themselves are huge; even now the morbidity rate of such babies is very high, and the disability rate of the survivors is even higher. In Britain, the issues are even more stark, because with the national health care provided by the state, there are always de facto health care rationing issues present in any care decisions. The million bucks spent on a Woody, for example, would go a long way to saving a number of later preemies.

Think about that last sentence, though. There's a reason we are uncomfortable with a utilitarian approach when it comes to health care, because our society has a moral appreciation for the individual that does not generally excuse the sacrifice of one even if it saves many (the now-classic anti-utilitarian strawfigure argument of killing a healthy person to save many waiting for organ transplants comes to mind). Being the father of such an economically inconvenient individual definitely strengthens my antipathy to such a cold-blooded approach to human life. And consider, also, the implications for other classes of patients. My grandmother survived colon cancer ten years ago, at no inconsiderable expense, of which she was only given a 10% or so chance of survival. Should we have applied the same cost considerations to her care? What of Mimi Sherri, who has beaten back her own odd type of cancer due to a very expensive drug that the insurance companies have not always wanted to pay for? In other words, there's a certain logic in making pronouncements about which babies to save that evaporates when it's your kid, especially when he is, individually, a much better candidate for care than the mean.

B) Of course, our time in the hospital began with a real-life ethical dilemma that ought to be, if it is not, a classic example in medical ethics classes. Maggie entered the hospital with painful, debilitating, and life-threatening symptoms relating to HELLP syndrome and preeclampsia. Neither of these conditions has any real treatment absent 'delivery', and when Woody was born it was because her liver and platelet tests put her in the category of 'will soon die.' Five days earlier, when she was admitted to the hospital, her test results were approaching these levels, yet if she was immediately delivered (two contexts to that verb, I assure you) of the child, there was no chance to save him. In that situation, you have an existing life that is competing with a nascent life; to attempt to save one is to risk the other. How do you weigh these competing interests?

I certainly didn't want Woody to be sacrificed to save Maggie, but I recognized then as I do now that the doctors facing her had a really hard line to walk when it came to her care. She was given drugs to try to stabilize her blood pressure and to keep her liver and platelets in line, but we were warned that the prognosis of continuing in that steady-state was not particularly promising, and so we were aware of the risks. The way her care was dealt with in the OR also reflected these competing concerns. There was a team that was taking care of her, and then the NICU team stood by to handle the baby. At the point that her life was in immediate danger (bearing in mind that HELLP has a morbidity rate of up to 25%), there really could be no other choice but to do the c-section.

C) The key to understanding how this decision was made, and why I think the assumption of those that believe we ought to now be pro-lifers is misguided, is that while there was already moral value in Woody's status as a gestating fetus, it was not necessarily equivalent to Maggie's, as a real life human. In other words, if you treated Woody's life as exactly equal to Maggie's life, then the doctors should have waited until the last possible second to deliver, even though it placed her life at more risk. I recognize that this, again, raises some morally questionable issues, but it illuminates my thoughts about such issues as stem cell research. To think of surplus fertility clinic embryos as the same binary value as actual adult humans seems misguided, because while the alluded utilitarian use of an adult human does not compute on our moral scale, the embryos at question are not actual humans yet, and even in the best possible circumstance (i.e., all of them being implanted in willing mother's wombs) only 25% of them even could become actual humans. Such embryos, like gestating fetuses, have moral value, but that value as potential humans does not reach the value as actual humans (from which follows my belief that scientific research on embryos that will never become actual humans is justified, on the grounds that the rest of humanity could benefit greatly from it).

Which of course means that beginning-of-life issues are necessarily more complicated than the care decisions that have faced doctors caring for people like my grandmother. Which means that while a blanket rule on saving early preemies might be morally questionable, but it does not follow that it is morally wrong to allow a preemie that has almost no chance of survival to die. Which means that despite my personal closeness to such issues, I see the arguments on both sides with sympathy, and means that I can't be a moral absolutist zealot, no matter how much I love my kid. It's a hard issue, and there are no easy answers. I am happy, though, for the fact that the science has evolved to the point to allow us these kind of moral dilemmas. It would be a lot easier in an ethical sense if more of us just died, but why would that be any better?

Wednesday, July 19, 2006

Real life, baby

Woody has officially outgrown a couple things now; he's getting to be big enough (up to 1700 g today, so ~3 lbs 11 oz) that a hat, a shirt, and a blanket are too small for him. Of course, in our mind, this means that we actually need to get him some clothes. He has been out of the isolette, which regulated his heat, so we have to put him in these ridiculously small and cute outfits that few places carry. It's been really, really fun to actually go and get him some clothes, because it reinforces the idea that he is an actual baby that has to do real baby things.

Woody has been so much more quiet and happy since being off the ventilator. He has not come down in oxygen needs as quickly as anyone would have preferred, but it's pretty clear that he's doing all right and that he's not going back to the Dräger vent anytime soon.

Folks, let me step back for just a moment into meta-commentary mode, as I feel comfortable enough analyzing my own reactions to my friends and family in order to say something about it. I understand that it's really difficult to deal with loved ones that have a crisis underway. I totally understand, because in the last five years or so I've been involved in a variety of family/friend situations that were extremely scary and unpleasant and awkward, from the death of close family members to visits to the hospital to estrangements. What do you say to someone who has a baby go to the NICU?

In the short term, I was really overwhelmed with what was happening as a happy and highly anticipated pregnancy abruptly seemed to spiral towards disaster. I started this site, for example, to take a lot of pressure off of having to make constant phone calls to keep people up to date. People who did call me during that time often times got a very terse and sometimes rude new father on the phone as I didn't feel like talking much. In the medium to long term, however, I've found that I'm craving the human contact more and want to talk to friends and get out of the hospital and do some interesting things. People had offered to make us food, and to do things to help us out, but it's a natural human tendency that as a crisis goes on for a long time, we tend to get fatigued with it and not follow through with such things. (Bear in mind, this is really not directed at the readers of this site, who have been so involved and kind and have stayed in contact in the way that I like to-- but there have been some of my friends in real life* that seemed to have just dropped off the face of the earth.)

So to answer my rhetorical question, I think the best way to deal with friends and family who are facing tough situations like this is to contact them, acknowledge what's going on, be happy about the happy stuff and sympathize with the sad stuff, and just remain present. It may be awkward to talk about the hard aspects of life, but no one says you have to be a psychotherapist. Just don't disappear.
*Meatspace, as the kids say.

Tuesday, July 18, 2006

A little wired

Woody's progress continues to be still mostly in the great range. Yesterday afternoon he had a weird heart pattern for awhile (basically, one of his ventricles was contracting slightly early, which showed up as a spike on the monitor every fifteen beats or so for a half hour) that got him a trip from an EKG technician, but in retrospect it's pretty clear that he was far more bothered by the test than the blip. He calmed down great when Maggie held him, then when I called before bed there was a note from the cardiologist for us that said something along the lines of "just a fluke, don't worry".

Of the going theories for what happened here, the leading one is that his caffeine intake got adjusted up a little too high, which caused a minor flutter. This can happen to anyone*, and as one of the doctors told us yesterday, if we were constantly hooked up to monitors they'd probably see something weird there too in 10 weeks.

I am not worried. Woody gained weight, has been stable, and remains cute. I have gotten a few comments from people who thought that his nose looked kind of raw in the first pictures taken after extubation. The first day was probably the worst one, because he was squirming a lot against the mask. To minimize irritation, the nurses switch him every four hours or so between these two breath interfaces:

The first one is the prong fitting, and actually goes up his nose. The second one is a tiny little mask, that fits over his nose. Each has a place it irritates; the prongs make the area between the nostrils sore, and the mask rubs worst under the nose. By trading off, they keep his skin from getting too beaten up. It took a day to get his correct size of hat and prongs, so now that they fit well he should not be quite as red. Later pictures will bear this out, I assure you.

Maggie and I have been coming to this hospital for too long, I think. We've now seen three of the monthly volunteer pizza meet-n-greets, we have seen every one of the neonatologists (impressive because they are each in charge for two weeks a stretch), and I keep seeing the same pattern of intake over and over again, where I'm sitting in the lounge posting an update here and the family comes in, worried about their baby and talking about what's going on. It's an odd place to observe people, because I don't hear a full narrative of their life stories or what happened in the pregnancy, and only rarely do I hear about the outcomes of the intakes (and those have been mostly negative outcomes), but I see the same worries and the same parsing of the argot that we did when we first came in.

Yesterday within minutes of each other I saw a couple talking about pulling the umbilical line and installing a PICC (which Woody did around day 14, as I remember it) and then another family following a recovery bed into the NICU (which is the way Maggie first came in, still woozy from the anesthesia after the c-section). It was an odd deja vu. I know we're not the longest tenured people here by a long shot, but I see that most patients in the NICU cycle in and out much quicker than Woody, which makes me a little jealous. But then I remember how lucky we really have gotten, and that makes things better.

*Auntie Krista swears to god that if she drinks more than two beers, she gets 'beer racing heart.'

Monday, July 17, 2006

Good news all around

All the nervous watching and waiting on Woody's performance on the CPAP culminated in this morning's blood gas test, which was pretty critical; his test on Sunday was well above the threshold for the CO2 target that was set for him on Friday (it was up to 83, and they wanted it 70 or lower), but since his pH was still good (7.31) they decided to see what today held. So we were pretty much as nervous as we've been this morning to know whether or not he'd show some improvement that would let him stay off the ventilator-- and we got it. His pH is an amazing 7.37 and his CO2 went down to 74, which is still not exactly awesome but it is a definite improvement, and shows that he's headed the right way.

Our good news did not end there. His oxygen needs are improving; on Friday they were in the 70s and 80s, all weekend they were in the 60s and 70s, and today they're down to the 50s and 60s. He also got his weekly metabolic tests, which show that he has marked improvement in his processing of a number of different nutrients. This seems like really good news because his last set of tests were taken while he was on the ventilator.

The final bit of good news is that he was able to gain weight overnight for the first time since the extubation (up 60 to 1645, for those of you following along at home). I am feeling very sanguine about his chances, and I don't think he is going back on that ventilator any time soon, if at all. I believe in Woody!

Sunday, July 16, 2006

Hanging on

We continue to measure Woody's success on the CPAP in a day by day style. The good news is that he's still on it, and hasn't been re-intubated yet. The other good news is that his chest x-ray this morning shows slight, but definite, improvement in the airspace. He maintains his inflation of his lungs down to the ninth rib, and the heart outline is a little clearer and to my eye I see more open spaces among the white patches. So that's good.

The not-so-good news is that his CO2 readings on his blood gas test continues to inch up, which is suggestive of an inability to fully purge the stuff from his blood. However, his pH continues to be fine, which is for now reassuring enough to the doctors that he shouldn't be put back on the ventilator yet (or as I refer to it, "chickening out"). I mean, I don't want to have him in a dangerous spot, for sure, and I understand that they don't want to wait for him to just get exhausted from the continuous effort of trying to breathe, which is why they'll put him back on the ventilator before he gets to that point. But on the other hand, like I said Friday, I think that whenever he gets extubated he's going to have to struggle a little bit to figure out this breathing thing, and I would much rather have it be sooner than later.

He also did not yet gain weight; he is down 5 g from yesterday, which is not bad at all. We do need him to start figuring out how to retain calories to gain weight again, because that's the other thing that will make them chicken out and put him back on the vent.

We are very happy, though, that as of last night Woody has started a good long run of consecutive nurse shifts with his primaries. We have nothing against the 'normal' rotation of nurses, of course, but we absolutely love his primary nurses, and we know that they care about him and don't want him to fail the extubation, so they'll give him a little extra attention and make sure that he has every bit of comfort and care necessary to allow him the best chance at succeeding. It remains a little touch-and-go still, but the fact that he's made it over 48 hours without being re-intubated is a hugely good sign, and I remain optimistic that he'll figure out how to purge his own CO2 well, not waste so much energy struggling and wiggling, and therefore be able to gain weight again like he is so good at doing.

Saturday, July 15, 2006

Holding our breath

It's E-day +1, and the suspense just continues. We knew that it would be a pretty tense time after the immediate extubation, but I guess neither of us realized how long the nervosity would continue. When you have a kid who's not used to breathing on his own, the responsibility and effort of making every breath can be an awful lot of energy to expend, and we continue to worry about him getting too tired to be able to adequately regulate his oxygen and CO2 levels: his blood gas test taken this morning was good for the pH (7.31) but getting a little high in the CO2 levels (70), which fueled the fears a little (although when we checked on him last night, he was requiring 80% oxygen to keep up his sats, so at least he didn't get reintubated overnight). Add in to this the fact that both of us want him to succeed so bad, and being in his room is a very jumpy time again.

It's not like going home is any better. If we're NOT in his room, we're worrying that he's struggling for breath and about to get re-intubated, but if we are in his room, we're constantly watching the vital stats and worrying that he's going to have a spell. Nonetheless, it's been a lot of fun getting to see his face, and especially his mouth. While Maggie and I agree that his eyes and upper face look like me, his mouth reminds both of us of her late father. Of course we can't make any real pronouncements, but without the breathing tube he does look increasingly like a real baby, and we think he's just so cute.

So here are our next big milestones. We're pretty sure he'll not get reintubated any quicker than tomorrow, unless he has a prolonged spell where he can't get good oxygen sats. He'll get a new blood gas test in the morning, along with a new x-ray (his x-ray this morning shows that his lungs look a little whiter, but that is explainable because his previous x-ray showed that his lungs were a little over-inflated, which is pretty normal for the ventilator). As long as he's at least marginal for those two, he'll stay on a little longer. The medium-term test, though, is going to be his weight. If he can keep gaining weight on the CPAP, he'll stay on it. If he doesn't start gaining good weight by next week, he'll probably get reintubated.

Keep thinking positive thoughts for us. It's going to be a long weekend, I think.

Friday, July 14, 2006

Extubation day part II

I am on my way out of the NICU right now, but am very pleased to report that Woody's 2 o'clock blood gases came back good: 7.31 and 60 on the CO2. That compares pretty well with the last ventilated blood gas, and ensures that he will be staying on the CPAP at least until tomorrow, barring any big unexpected changes. We are very happy with this. I have been sitting in his room most of the day and have noticed that on balance, he is actually doing better on the CPAP than he was on the ventilator: he doesn't ring as often, for low O2 sats, and he recovers quicker when he gets below the alarm threshold. Several nurses have commented that his respiration is very deep. Apparently a common problem with CPAP infants is the tendency to breathe shallowly, but Woody is pulling air deep into his lungs, which is great for his air exchange.

He's also started squeaking a bit more when he tries to cry, which is very cute. When one has a tube rubbing against their vocal cords for months, it will naturally leave one very hoarse, so it makes sense that he doesn't make much noise. And I am sure that the time will come when we will be very happy to not hear him cry, but for now it's just a welcome sign that he really is a regular baby.

I am going to go home now and have a burrito or something. I am already pretty tired, and I will be back later in the day. Keep your fingers crossed, but all looks very good still. I am very proud of him.

Extubation day part I

I am taking a little break from Woody's room to post an update, since I know that there are a few of you at least that are very anxious for news on the extubation front. Things are looking good now, but that was not necessarily the case right after the fact; he certainly took his time to get used to what was happening.

Maggie and I got there at around 7:30, and we were absolutely bouncing off the walls excited and nervous. Of course, nothing in a hospital ever seems to go off on time, so it wasn't until around 9 that he was actually extubated. The process itself is pretty simple; first you put the CPAP (an acronym, of course, and I'm too lazy to look it up; my best guess is "Continuous Positive Air Pressure") mask on him, then just pull the tube out of his throat. Simple, right? Well, I ask you, if you have only known breathing as a process where a machine forces air into your lungs at regular intervals, how easy would it be to figure out not only do you have to breathe on your own, but you also have to do it while breathing through your nose, a trick that you have never tried before?

At first he was keeping his mouth open, too, which made it difficult, because the pressure provided by the CPAP was going as much out his mouth as into his lungs. And he was very agitated by the prongs of the mask that go up the nose. His heart rate was shooting into the 180s and he was thrashing around pretty good; his saturation was staying in the 70s even with the oxygen turned all the way up. That first hour was incredibly nerve wracking, as we just tried to get him calmed down to TRY to figure out how to breathe. I was most nervous about them giving up and re-intubating, which they still could, but I didn't want the trigger to be pulled too soon because in my mind it's going to be an annoying, difficult time to get him to try to breathe on his own whenever it happens, and I would rather it happen sooner than later because mechanical respiration is inherently damaging to the lungs.

As it happened, the turning point came when Nurse M2 gave him a half feeding and a dose of Atavan, and he started calming down. After an hour of stat watching, they started turning down his O2 about an hour ago, and he's been stable in the high 50s to low 70s since, which is fine. The trick is going to be keeping him calm and stable and not fighting against the mask.

He does have some extremely good signs going for him. First, the BPM line on his stats, the one that I have previously said is not very important, is now important. And his is great so far. You will note there that the wave form is very regular and the rate is good. Second, the nurses report that his breathing is deeper than what he was doing on the ventilator, which suggests to me that he is getting better quality breathing and is figuring out what to do well. Third, after the first hour, his heart rate has gone down to the 150s on average, which is a fine rate for a 32 week gestational preemie.

The next big (huge) test is going to be his blood gas test ordered at 2. If his stats are not good, he is going to be immediately re-intubated. The numbers we are looking for are better than 7.2 pH and below 70 on the CO2. His most recent results on the ventilator, by comparison, were ~7.32 pH and ~48 CO2.

I will update after then-- think positive thoughts!

Thursday, July 13, 2006

What was I talking about?

I talked to Grammie earlier today and one of her first questions about Woody was "what's up with the red hair?" I don't know, but if he winds up with red hair, it proves that someone out there has a sense of humor.

A few years ago, I bought Maggie an antique mandolin I found her in an antique store that was very near our house in St. Paul, basically on a whim. Last year, before she got pregnant, Maggie finally decided to take some lessons; she always wanted to be able to play an instrument that involved more ear and less rote (like me, she had taken piano lessons while growing up) and having the mandolin seemed like as good a reason as any to play it. The first song she ever was able to play passably was the old Irish ditty "Red Haired Boy," which has been primarily notable ever since because Grandma Stiffler and I have the annoying propensity to whistle, hum, or sing it at family gatherings just to make various people roll their eyes.*

Anyway, when Maggie got pregnant, there were a few ha-ha discussions about how 'wouldn't it be funny if the kid was a red-haired boy,' which gained a little more traction when we found it that the kid was a boy. Still, it never seemed very likely, even though Granddad Hobbs has a famously bright head of red hair. As we all know, red hair is a recessive gene and there is only very spotty evidence to support an idea that Maggie's family has the gene (although, fine, her three cousins that have red hair are perhaps a bit better than spotty evidence).

On the other hand, many babies wind up with differently colored hair than what it looks like at the time of their birth, so who knows what it will wind up as.

I guess I just ramble today because I'm so stoked about tomorrow morning's extubation attempt. I'll try to post an update in the morning to let you know if the early indications are that it's taking or not. We are beyond excited.

*Lately I've started coming up with impromptu lyrics to the song that usually have something to do with how Grandma Stiffler is going insane. Which is, of course, a self-fulfilling prophecy. But what's a good son-in-law to do besides drive his mother-in-law a litle batty?

Wednesday, July 12, 2006

The Final Countdown*

The time has been set. The long awaited first extubation attempt for Woody will be, barring any unfortunate changes, at 8 a.m. CDT on Friday, July 14. The timing was set by another good day (he's been averaging in the high 30s for FiO2 again, and the desire to give him a day of the strong steroids before making the attempt. So he gets the steroids tomorrow and he gets the tube pulled Friday.

We are very excited about this, as one could imagine. Yes, there's a not insubstantial chance that he won't be able to support his own breathing, and the doctors are going to not give him too much threshold on any struggling, but we are very happy that he's at least strong enough to be able to be given the chance. He'll be placed first on a rated CPAP, which will provide pulsed air pressure directly into his nose to provide a little extra lung support. If that takes, he'll be placed on a regular CPAP, which is just a steady stream of air, and then to the nasal cannula as a last step before being taken off lung support altogether.

I'm so proud of him for doing so well. There have been at least three nights that I wasn't even sure he'd make it to morning, and now he's getting a voluntary extubation attempt. I just think he's so awesome.

*I've gone and given myself a horrible Europe earworm now. That damn synth line will reverberate in my head forever.

Tuesday, July 11, 2006

Staying on track

I absolutely love the surprise (or fake surprise) that doctors show when they hear about Woody's recent run of good news. When we were at rounds today, the doctor asked what his FiO2 readings were running, and when he got the answer (30s to low 40s) he did a mock double-take and said "is this the same baby?" It's like the classic trick of when you get handed the bill at a restaurant you just drop it like it burned you.

The NICU was pretty much going crazy around us today, too, so it was good that Woody's been relatively quiet and cooperative so that he doesn't contribute to the chaos. There are something like four babies being admitted this afternoon, and apparently a number of the other babies have gotten very sick, and so rounds got delayed a number of times while doctors and nurse practitioners ran around like Kermit escaping from a roving pack of cajuns. Nurse J told us a few weeks ago that a recurring nightmare of hers is waking up with the thought "OMG I forgot to feed a baby" and I bet it's days like today that do that.

Anyway, Woody is back over 1500 grams (and he got his feedings increased AGAIN), he continues to show good progress on blood gas tests, he has been relatively stable with fewer de-sat episodes (and they've been less severe, too, dropping into the upper 70s as opposed to the 50s), and is very, very cute. His leak keeps getting bigger, but that hasn't been too much of a problem either given that everything else is doing ok. But since he is still making good progress we're on track for extubation: if he has one more good day, he's starting the steroids on Thursday and he'll get the tube pulled Friday. Big days ahead. He may not be able to handle it, but it's about time to give him a shot.

Monday, July 10, 2006

Back in the saddle

After a week of feeling like death warmed over, I finally was feeling well enough (and no more fever) yesterday that I was pretty convinced that I at least wasn't contagious anymore with my narsty flu I've been fighting. So I got to see him again in person after having missed Woody on Thursday and Saturday, and only peeking through the window Friday while dropping off milk. I felt so out of the loop, which I know sounds pretty funny to someone like Grammie, who hasn't seen him since he was about a week old.

Today I upped the ante by coming in this morning and actually holding him for a long time, which was great, especially because he was pretty stable and wasn't ringing the alarms much:

When he was first born, his skin was so fragile and his nervous system so undeveloped, that we were warned that even stroking him would set off a jangle of uncomfortable responses, and so not even to really touch him much, unless it was just laying a firm hand on him. Now, though, he really likes caresses and soft touches, and it was really fun to just hold him and lightly poke at various parts of him, like picking up his ear and seeing how pliable it is and whether it's getting any cartilage yet. Or playing with his hair, or having him grab on to my finger, or whatever. Every day that goes by he's more and more like a real baby.

I'm very conscious now of the fact that even though he was so premature that he was right on the line of what is even ethical to try to save, and even though he does have terrible lung problems, the complications he doesn't have are really impressive. He's been absolutely stellar in areas like digestion, which I know are really difficult for most kids to deal with that are that premature. And I know he's pretty smart too: his latest trick is that he's learned how to play possum, because he's learned that nurses are loath to bother him if he's asleep. Nurse J reported, and M2 confirms, that he now will pretend to be asleep when he hears them lurking around ready to change his diaper and otherwise do "cares". Unfortunately for his wiley plots, his vision hasn't developed well enough to be able to see the nurse sneak up on the other side to see if he's actually awake and looking for the nurse to come back, because they keep seeing him abruptly close his eyes when they do come back to his field of vision.

Clever. I can tell he's going to be a handful.

Sunday, July 09, 2006

Getting ready for the big move

As mentioned yesterday, the doctors are trying to be as cautious as possible when it comes to Woody's extubation attempt, because it's always traumatic to have to re-intubate the kids, and because we just want him to succeed after 60 days on the ventilator. On the other hand, there is a countervailing force that is beginning to push us to do it as quickly as possible: his growth rate. Recall that the little necks and tracheas on preemies are so small, and you have so little wiggle room, that a tube only is big enough (or small enough) to fit inside their throat for a month or so at a time. Woody was moved up in tube size about a month ago and now he's showing signs of a major air leak again, as the tube is too small for his growing airway. The net effect here is that the leak means that he can't be kept on the most sophisticated pressure settings for the ventilator, and if he wasn't going to be extubated they'd have to re-intubate him with the next largest size up in ET tube soon. So the more I walk into his room and see 85% leak on his measurement settings, the more I know that the race to extubate has pressures to go slow and to go fast, and I think we're going to have to try to play it right down the middle.

Woody continues to do fine. He lost a little bit of weight last night, which is totally normal; he often has a day of a slight loss followed by three or four with a good gain. The difference between a gain and a loss can often be something as mundane as whether they weigh him before or after changing his diaper. He is still right around 1500 grams. His O2 needs also are quite good still from his perspective, in the low 40s. And he continues to handle CO2 in the blood a lot better, although his test today wasn't quite as spectacular as it has been.

Two minor concerns I have today: he is showing some very preliminary signs of elevated calcium in the kidneys due to prolonged use of the lasix (diuretic) to keep the fluid out of his lungs. This is not independently much of an issue, especially at this stage, but gives us something to be concerned about for calcium uptake and bone density down the line. The other issue is his lung x-rays, which apparently are not showing major improvement yet, although the doctor hastens to tell us that x-rays can change day to day greatly based on how much fluid is in there. Since they only take the pictures every week or less, it's really pretty tough to draw too many conclusions there.

Saturday, July 08, 2006

Where did that come from?

For whatever reason, Woody has suddenly started doing very well. Consider the following pieces of good news in the last couple of days.

  • His ultrasound taken on Friday shows that his aortic clot is substantially thinning, and his kidneys have shed their retained water completely in one and almost completely in the other. This means they've pulled him off the amoxicilin, which he was on as a targeted prophylactic antibiotic for potential kidney infections.

  • His blood gases have rather abruptly become so good that they are close to adult normal (his last blood pH was 7.43 and his last PCO2 was 49. If you recall my last discussion on 'permissive hypercapnia' you'll note that his numbers were in the 7.23/83 range).

  • His weight is now up to 1500 grams (3 lbs ~5 oz), which is considered a magic weight for such things as extubation attempts)

  • His weight gain per kilo is up to just shy of 16 g/day this week, which is outstanding (I give the credit to Maggie, who despite her low lactation supply has managed to keep him in breastmilk up until the point that they ordered formula for three feedings a day to increase his iron intake).

  • This is the real kicker: in the last three days, his FiO2 (oxygen needed to keep him saturated) has dropped below the 40% mark for the first time in weeks and weeks and weeks. In fact, last night he briefly got down to 29%, which is a post-two week record. He remains in somewhat higher ranges when he's awake and active, but he is generally doing much better consistently.

The net effect is that he is doing so well that the doctors are actually going to play it a little safe when it comes to the extubation attempt. They want to give him every chance to succeed, and so they're starting the burst of steroids (assuming current trends) on Wednesday for a Thursday attempt. We can't wait to see his face.

Friday, July 07, 2006

Just the vacs, ma'am

Woody is doing very well again. It does look like they are going to put off his extubation attempt until late next week, however, because of his vaccines.

It came as quite a surprise when we got told that Woody needed to be vaccinated, because while it is normal for a two month old baby to get vaccines, Woody is hardly a normal two month old baby (I mean, we still calculate his age in gestational weeks, and considering that he is just now at 31 weeks 4 days, that seems pretty young). Our second surprise was in which vaccines they wanted to give him. In addition to the DPT and the HIB and the polio, which are fairly normal, there was also Hepatitis B, which doesn't exactly seem like something he's at a high risk of developing (they gave us a brochure that indicated that risk categories included intravenous drug users with shared needles and promiscuous sodomites)

But, as I figured, it was probably best to get all of them, because let us not forget that while certain conspiracy theorists believe that vaccines cause autism (which I will note that numerous studies show that there is no evidence of this claim) they actually prevent massive amounts of disease and suffering, and I have no interest in causing young Woody any more suffering that he has to already have. On the other hand, I remember last year when I got a tetanus booster right before going turkey hunting, I was sore for a good two weeks after that, so I bet he is not very happy with it either.

I suppose this is as good a time as any to say what we're planning on doing when it comes to the circumcision question. Woody will have, as noted, surgery on his hernias either right before or right after going home from the hospital, and the nurses pointed out that since he's going to be under general anesthesia that is a great time to get the circ done. Except for the minor problem that there's really no good reason to do one. Circumcision has, yes, shown some positive benefits in places like Africa that have high rates of heterosexual AIDS transmission; it tends to reduce the risk of men picking it up from their partners. There have been some findings of increased rates of urinary tract infections (UTIs) in kids without. But weighed against these two dubious benefits* is the fact that getting a circumcision done is itself a lingering pain for a guy who's had pain for his whole life up until now, and is an elective surgery that can have negative consequences for his later sex life, done at a time that he cannot consent or have any say in the whole process. I also suspect that much of the pressure to do circumcisions has to do with the fact that most men here (the US generally, and the upper Midwest, specifically, where the rate of infant circumcision remains the highest) were circumcised and the need to come up with reasons to justify it to make it not seem like we were unnecessarily mutilated.

I decline to perpetuate that particular pattern. Woody shall remain uncut unless he gets older and decides he wants to do it himself.

*I say dubious because each has a non-circumcision alternative; for AIDS condoms work better. For UTIs research shows that teaching the kid to clean under the foreskin works at least as well. There is no medical reason to do general circumcisions, and the risk of one of the rare conditions that indicate therapeutic circumcisions is not great enough to justify it.

Thursday, July 06, 2006

Breaking the streak

Through the first 55 days of Woody's life, only one person has seen him each and every day (me!), but that streak has to come to an end today. I have some kind of bizarre illness* that I can't quite place, and the fever is enough to convince me to stay away from the hospital. This makes me very sad, but I know it's the best thing to do to not knowingly expose him to any possible illnesses, as his lil' immune system is just too immature to fight off anything nasty.

Woody had his eye exam today, and we got a report from the eye doctor on a pre-prepared form with choices like "Your baby has advanced Retinopathy of Prematurity and therefore we need to immediately go to surgery" and "Your baby is totally A-OK". Woody got designated something very ambiguous like "Your baby's eyes are still developing and may be at risk of later ROP but we can't tell right now so we'll be back to bill your insurance again in two weeks." We also got a very nice and extremely glossy brochure from the Association for Retinopathy of Prematurity and Related Diseases (ROPARD), which details the things that happen during ROP. I must note, cynically, that the brochure was paid for by the company that makes the lasers for laser treatment of ROP.

The upshot of this, however, is that there is no looming surgery now that will prevent us from making an extubation attempt next week. We remain on track for Tuesday, we think, although the doctor(s) are definitely not setting that as a set-in-stone sort of day. We're really looking forward to the brief moment after extubation where we can actually see his face, as we've never seen him without the masses of tape to hold the tube in place. Of course, the system he'll go on immediately after that won't be any better for facial visibility, as he will go on a CPAP mask that will cover up his nose entirely. But at least we'll be able to see his mouth, and he'll get to try to start suckling and that sort of thing. We're very excited.

*Maggie thinks it's the flu. I don't think so, primarily because of the distinct lack of phlegm balls. I was joking around for a bit about having West Nile Fever, but after looking it up, I think it really could be what I have (fatigue, muscle soreness, fever). Which is good in one sense because it wouldn't be contagious to Woody. But I'm staying away until the fever breaks for good.

Wednesday, July 05, 2006

Wood, Chuck

Tonight (day 55) Woody got a visit from his great-grandfather and -mother Seivert for the first time. Chuck is a very tall, gregarious guy who would love to talk to everyone except for the minor problem of him being almost completely deaf at this point. This leads to the complication of him getting involved in a conversation that consists, to a large degree, of his own comments about a matter and then de facto ignoring any feedback on the issue. He has a little bit of a limited range, too, but we discovered tonight that it's not all about 3M stock splits and baseball, he also is delighted to tell everyone around about the fact that he was 13 pounds upon his birth, and that he has ten kids and ([shouted:] "how many, Elaine?") eighteen grandkids and a smattering of great-grandkids. All in all, it was pretty hilarious, although after a while Woody started showing some signs of getting a little annoyed at all the noise (you know, decreased blood oxygen sats, blah blah blah) so we had to pull Chuck away from a pretty nurse that he was accosting, and encourage him that it was time to go home. Said Grandma Stiffler upon his exit, "I think that MY blood oxygen sats probably plummet when he starts bellowing too."

What was REALLY impressive when we came in, though, was the fact that his O2 was set at 43%, which is the best I have seen for a while, and closer to that magic number of "below 40" that gives a better chance of success for extubation. The current plan is to start him on a steroid burst on Friday or Saturday to give him a three or four day run with the steroids to increase his chance of having a successful extubation. Back in the day, as I have said, they used to give out lung steroids like candy to these micropreemies, but recent research has taught the neonatalogists that prolonged exposure to the steroids can have detrimental effects on their brain development. But they do show good progress with (especially) the short doses, and the research suggests currently that the 'burst' method doesn't present the same kinds of developmental problems.

The other thing that's delayed the extubation attempt for him is that he's gotten his eye appointment scheduled for tomorrow. I have been warned by multiple nurses that the eye exams are very traumatic for the lil' tykes, and so we don't want to give him any more stresses while doing extubation. The other consideration is that a not-that-insignificant minority of the preemies wind up needing pretty quick surgery, and if he were to need that they'd need a tube in. So to prevent him from requiring an extra intubation after already being extubated, we're going to see what happens with the eye exam.

Overall, he's doing very well, and I'm quite hopeful for the next few days. I'm going to try to start collecting prayer notices from the disparate churches that have been keeping track of Woody's saga. Here's the first one I've found, from his great (and Great) grandparents'* church in my hometown of Norman. Thanks for the support.

*I'd like to note, by the way, that Woody has SIX great-grandparents following his progress, which ought to tell you right away that he's got some great fighting genes.

Tuesday, July 04, 2006

Holiday in Sarajevo

I don't exactly recall too well, but I don't think that they set off this many fireworks when I was growing up. Tonight, even as I write this, there is a constant barrage of rockets, firecrackers, and mortars going off on every block around. It's like a war zone.

Of course, I feel blessed that I can worry about such things instead of constantly freaking out about Woody. His condition now is of a definite chronic nature as opposed to a perpetual acute crisis. Nonetheless, we have a big week underway. Woody was moved to the crib yesterday; he was changed to 3 hour interval feedings today, and he gets his first eye exam on Thursday (along with another kidney & aorta ultrasound). More on the eye exam tomorrow.

Also, if you haven't already, make sure you read Maggie's first post.

Monday, July 03, 2006

A big day

Today when we walked in to Woody's room we saw them removing his isolette and replacing it with an actual crib. This was not something we were expecting, but we are very happy about it nonetheless. Instead of having a plexiglas shield constantly between us and our kid when we visit, now we can just be right there next to him. This is, I am sure, another one of those situations where most parents can sympathize but not even really understand. After all, most kids never go to an isolette, and being in a crib is just so normal for the rest of you. But for us, it's day 53 and for the first time ever, he's not in the isolette. It's another great sign of progress.

The decision has been made, subject to change, of course, due to circumstances: Woody will be extubated later this week. He is making huge progress in all of the three requirements (weight gain, pressure requirements, oxygen) except for the O2 needs, and even in the case of the oxygen we are thinking that he looks worse than he actually is, because he's been annoyed so much by the tube and by the fact that he's still a little constipated. Perhaps moving out of the isolette will make things a little more interesting for him, too. He seems to be pretty interested already in what's going on around him; he was wide awake when we first saw him.

My dad (Granddad Hobbs) and Sheri (we're still in discussions as to what to call her, she's leaning towards "Mimi", a term that she had for a grandmother of hers a long way back) have been visiting the last couple of days, which has been a lot of fun. They last saw Woody when he was under two weeks old, and he looks amazingly different from then. Not only is he about three times as heavy now (he had dipped down to about 420 grams at his lightest) but his skin looks normal, no longer red and thin and almost sticky like a salamander's. They will be heading back tomorrow after we have a fun barbecue at the Stiffler/Korfhage grandparents' farm near Red Wing tonight.

Sunday, July 02, 2006

Retconning the blog*

As obsessive Woodywatchers already know, there have been some Blogger issues since Friday that have prevented updates. They appear to finally be resolved. Maggie's long-awaited post (yesterday) is probably going to be up soon, and when it finally goes up the archives will reflect that there never was any gaps in the updates, which is the way I like it; I've not missed a day on a post, and because I can manipulate the dates it won't look like I did in the future.

I'm also the only person that hasn't missed a day visiting Woody. On day 2, Maggie was so sick and sore that she didn't even get to see him, so I've got the longest active streak of seeing him on consecutive days. On the one hand, it's awesome that I've not had any gaps in visitation. On the other hand, it means that if he ever gets well enough that we can consider, say, going on a camping trip, I wonder if the perceived need to keep the streak going will deter me from taking some needed time away. I hope not, but I know on at least some level it will.

Woody is doing well again today. He is slowly gaining weight, and his only real problem with that is that he's having some, er, irregularities that will probably require some degree of mild intervention (Nurse J told us last week that using the glycerine suppositories are quite the trick for a NICU nurse to learn, because they're so small they tend to melt in your hands in just a few seconds). We aren't that worried about it. He's also been bumped up to 17q2 feedings to help him continue to gain some chub. Assuming he makes any progress on his O2 needs at all, he's likely to get his first extubation attempt later this week, if he doesn't just pull it out on his own. I'm thinking and hoping that his high requirements on that front may reflect his constant annoyance with having that tube down his throat. We will see.

*Retconning is a very dorky neologism meaning Retroactive continuity. A classic example of a retcon is the explanation of the "Kessel Run" in Star Wars. Han Solo says that the Millenium Falcon is the ship that made the Kessel Run in under 12 parsecs. A parsec is, of course, a unit of distance and not of time, so the Star Wars uber-dorks decided that it referred to a curvilinear trip from point a to point b around a black hole, and therefore the shorter a trip the faster the ship must have been. A slightly less geeky example is the explanation of the entire season of Dallas being explained as Pam Ewing's dream (oddly, the spin-off Knots Landing was based on the alternate reality of that dream, which introduces its own quantum mechanic to the soap opera world). More retcons here.

Saturday, July 01, 2006

Learn It, Know It, Live It

Nathan asked me to do an occasional post, which I am happy to do if only to say thank you for all the prayers and support during this simultaneously difficult and exciting time. However, I am also eager to share some of my unfolding thoughts with those who care to read on.

Being labeled "mom" was always something that seemed distant to me. I knew instinctually that I wanted to be a parent, but couldn't wrap my brain around the logical gap between wanting a pregnancy/actually being pregnant and wanting to be a mom/actually having a baby. So once I did get pregnant, I thought being so would help the reality of eventually being a parent sink in. I believed the natural flood of hormones would assist my brain's evolution and I was convinced that once I felt that first fetal kick everything would become intrinsically clear. Instead, my difficult pregnancy was confusing. My hormones became my definite enemy, not a natural force of revelation. My body was in turmoil for that brief five months and my mind followed suit.

The circumstances surrounding Woody's birth only contributed to the confusion. The last few days before he was born I was on an IV drug design to dull my central nervous system and narcotic pain relievers, blurring the lines of reality. I gave birth in a crowded buzzing surgical room and our baby was whisked away immediately. The first time I saw Woody was 36 hours later, with him in an isolette and me in a wheelchair. What I saw didn't look like a baby - especially in the very early days, he had an alien-like appearance. I didn't feel like a parent, probably because we couldn't actually do most things parents do. I couldn't feed him, we couldn't change him, and we weren't able to touch and hold him. But I knew instantly that I loved Woody immensely, and those feelings kept me coming back to the hospital each day to learn him - to know him - to just be there for him.

Slowly he started to look normal. All his parts are there, he's just smaller. In staring at him for hours, I've noticed his little pug nose (not sure where exactly he gets this), his forehead that crinkles into a consternated expression just like Nathan's, and his huge blue eyes. He has a big personality and he's frisky. He bosses the nurses around by holding his breath against the ventilator (resulting in all sorts of beeping alarms) when he wants to be changed or have his head repositioned or get an extra blanket. Nurse J mentioned she doesn't need a clock around to know when to feed Woody, because his intentional alarming will notify her that he's ready. He enjoys kisses and being held. He is and will be a normal kid.

As the surrealness of the early days of Woody's life begins to recede, as he begins to look more everyday like a "real" baby, and as I have physically recovered, I'm beginning to feel the responsibility and shear elation that must come to every new parent. For me, it has been a process, not a Eureka experience, that has led me to realize my inner "mom." In fact, while contemplating this post, I came to understand that parenting isn't something bestowed, it's something that earned. It's the interaction with your child, the act of caring for your child, and the internal reflection of this relationship that creates the definition. I come to the point, and I know this is incredibly cliche, but it is true - "Mom" is a verb.