The inevitable (but minor) downturn

After so many good days in a row, it is only natural that we now seem to be going the bad direction on the 'roller coaster' that is preemie care. Woody is just completely stuck on his ventilator settings, and is very sensitive to any changes in his settings. This morning they attempted to change his breathing rate from 50 to 45, and young Captain Crankypants just really hated that. His blood gases went down, his oxygen needs went up, and the nurses and doctors quickly decided to put him back to his previous setting rates.

This marks something like the fourth attempt in five days to wean Woody down on his ventilator settings with no success at all, and coupled with some marginal blood chemistry test results has qualified today as not as good as most of the previous week. To make things worse, because his tests are not as good, he has been ordered for a number of additional blood tests, and since they pulled his arterial line last Friday, he has no set port to take blood out of, which means that every test means another needle stuck in him. Which, needless to say, he hates.

(A quick note about how one can tell what a preemie hates. Yeah, he can't cry yet, and it's not like he files a formal grievance with the hospital any time he gets a procedure that he doesn't like. But recall that we watch his numbers carefully; when he gets stressed his oxygen percentage in his blood goes down [in the lingo we call that 'de-satting'-- i.e., desaturating, since the blood oxygen percentage measures the relative oxygen saturation level of his red blood cells], his heart rate goes up, and his blood pressure can go either way.)

His continued need for relatively high ventilator settings and his extreme touchiness when it comes to being bothered have led the doctors to consider another 'two day rule-out', which I explained at some point last week, to screen for all manner of infections in his lungs. Also, he is still on his first breathing tube, and since he's actually growing a bit now, he may have outgrown it, necessitating a new one. Overall, however, although he is not doing as spectacularly as the previous few days, my general worry level about him is still not as high as it was, say, a week ago, which is definitely a good thing.

Best day yet

Yesterday I got to hold the lil' peanut for the first time. I have heard from any number of people during Maggie's pregnancy how special it is to hold one's kid for the first time, but considering the circumstances I think it's even more special than the average dad's first time. For one, I had to wait until his nineteenth day to do so. For two, just a week ago I was quite literally worried about him not making it through the night. For three, well, Woody is really, really small. As you can see from the pictures.

As for the update on the vitals, he continues to progress very well in all areas except the lungs, and even there he is showing tiny signs of improvement. As of today, he is getting double the amount of actual feedings. This still isn't that much. Two mLs of breast milk every two hours, up from one. A mL is a cubic centimeter, which is about twenty drops of fluid. Twelve of those every twenty-four hours is about 24 calories of energy; he is getting about 75 through the nutrient line every day. All of which just demonstrates the central truth of THAT KID IS LITTLE.

I would like to take just a moment and thank people for all the nice little notes and comments I have received in the last three weeks. There are a lot of nice, sweet people in this world, and while many of them are related to me, not all are. I would especially like to thank the contingent of "Hormonal Hobbs Women", and the honorary HHW, which oddly enough includes some men too. There have been a lot of tears on this end too.

Looking ahead

Woody keeps doing well in every area but the lungs. Although he's not any worse, he doesn't seem to have much flexibility in lowering his pressures or getting down the oxygen needs yet. I am beginning to think that he just needs to be able to get some real food in him (his 'trophic feeds'-- i.e., the gut-primers, are scheduled to increase in the next few days) and be able to grow and get strong to be able to show any progress on that front.

His glucose continues to show improvement, so it looks like he can get more sugar in his nutrient mix; he isn't having much trouble maintaining acceptable levels of most of the things they track in his blood, and he continues to, uh, excrete.

One minor problem we have noted today for the first time is that Woody's working on a couple of little hernias. I take my cues for what to worry about from the demeanor of the doctors and nurses while on rounds, and it seems pretty clear that this is not a Big Deal, and therefore I am not going to stress about it. He'll need to get a quick surgery sometime around (or even after) he goes home and then it will be done.

After our awesome time holding him yesterday, I am looking forward to getting to hold him myself, and making sure he gets cuddled properly. I just know that will help him get better.

A big milestone

Woody's improvement continues, and with it, Maggie got the first opportunity that either of us has had to hold him. She was a little (ok, a lot) nervous at first, but quickly settled into the idea of having this fragile little baby laying on her. I was pretty jealous, but it makes sense letting her have the first turn and having him listen to her heartbeat for awhile.

He's now 17 days old, and it's amazing to me how quickly he seems to have turned things around. Only about five days ago his condition seemed pretty dire to me, and now it seems like everything is improving at some level. The only big concern remains the respiration, as he has not been able to drop the pressure requirements too much on the ventilator, nor come down consistently on the O2 needs.

However, even on that front I remain very optimistic. As I pay more and more attention, I realize that my thinking on the issue of oxygen requirements has gotten a bit more sophisticated-- I used to look solely at how much he needed, but now I realize that the pressures needed to force the air into his lungs has a great deal to do with how he's doing as well. For example, a higher pressure need may be worse for him than a higher O2 need, but I might have looked at the lower O2 number on his ventilator and felt just fine about it. On the flip side, I have come into his room a couple of times in the last few days and noted a higher O2 number, but felt fine about it because it was with much lower pressures than he has needed in the past. And as long as his lungs are getting better, I'm not going to worry as much about the minutiae of everyday care.

Another sign of how we think he is improving is that Maggie and I felt good enough to actually go out last night. We saw the St. Paul Saints minor league team (they lost) on "Love Boat Night." Ostensibly, this was to honor the 30th anniversary of the television show. The gate prize of a purple and yellow boat with "Minnetonka Queen" on the side might lead one to believe that the Saints were, in fact, trying rather to make fun of another local sports franchise. Maybe.

Nice and boring

Woody's sixteenth day is starting out with him quite stable and with good news from the doctors. His general haze in the lungs is clearing, with the doctor pronouncing it "way better." His blood gases are good, his oxygen needs are decreasing, and he is handling the tiny bits of milk they are feeding him (and producing the, uh, proper waste products).

The arterial line in the belly button is coming out later today, and they'll have to come up with a new place to pull blood samples after that, but I don't consider it a very big deal. I know it's a lot less exciting than worrying about some potentially life-threatening complication, but I'd rather be bored than excited any day.

Upon reflection, it's been about three weeks where I've not been immediately worried about either Maggie or Woody. I got back from seeing Auntie Val's graduation and immediately was taking Maggie to the hospital with what we thought was severe heartburn. It wasn't until early in the morning, after I had been up for about 24 hours straight, that I realized that Maggie wasn't just going to get sent home from the emergency room. And later that day we were told that she wasn't leaving the hospital until we had a kid.

Here we are and we're parents and yet not really feeling like parents yet. Maggie and I still don't own any baby stuff, aren't able to even really think about bringing Woody home anytime soon, and haven't even been able to hold him. But if we keep up the boring improvement, it should happen fairly soon.

Save Ferris!

My mom (Grammie) told me yesterday that she ran into a colleague of hers at the post office and briefly told her about the Woody Situation, as it were. The colleague said something along the lines of "I've been praying for the one pound four ounce baby already! It got announced on the radio station!" Thanks to the chaplain at Gardner-Webb University (go Bulldogs, woot woot) it seems that everyone in Cleveland County, North Carolina has heard about lil' Woody.

This tiny anecdote is but the most dramatic example of the phenomenon that I have become aware of: people that I didn't even know about have been following the kid's progress. I am flabbergasted and touched and in some ways, really freaked out. I mean, I kept up a blog for a long time but I was protected from my spotty writing by the fact that no one actually ever read it. That being said, I write the updates partly for posterity, partly for my own personal therapy, and partly so that I don't have to send out daily emails to family and friends. And I am self-aware enough to know that it's the charisma of the kid that keeps up the interest. Anyway, thanks for caring. I really mean it.

Woody is doing very well the last few days. The doctor yesterday told me that the PIE issue has seemed to just evaporate, and suddenly isn't something we're nearly so worried about anymore. His x-rays continue to show problems with the nasty haze and they sound (here's that gross word again) "wet", so they continue to treat him with the lasix to keep him urinating strongly and keep fluid from accumulating in the lungs.* The haze in his lungs is likely the development of scar tissue and similar damage due to the CLD and he is going to be fighting this for the remainder of his time at the NICU. Fortunately, my research has indicated that CLD is something that kids can just sort of outgrow, literally, as they repair the damage to their tissues and get bigger and stronger. Moreover, he has maintained good blood gas levels, which means that he's tolerated the move back to the normal ventilator well.

To that end, we're very happy that we have moved back to trying to prime his gut with tiny amounts of milk, which can lead to real feedings later. Other than his ongoing lung problems, the biggest worry now is his arterial line that remains in his belly button; these things normally last only about a week to nine days, but it's been in a lot longer. If it doesn't come out, it can pose a danger for clots and infection, but if it comes out, then we'll have to come up with another strategy for drawing blood for tests, and with his condition being touch-and-go this week they considered that the worse threat at the time. Sometime in the next couple of days the 'art line' will have to go and a decision will need to be made about his draws.

Finally, Woody is two weeks old today. He's already survived childbirth, intubation, two ventilator switches, PIE, and generally just existing where a 23 week baby isn't supposed to. He's been such a fighter and I'm really proud of him. Now if I could only just hold him and stuff.

*DID YOU KNOW?? Woody's room features a mini postage scale, and they weigh each diaper to keep track of how much he pees out.

The difference between worry and worry

"Don't kid yourself," my mother-in-law said the other day. "Even after he gets out of the hospital, you're still going to worry."

I get her point, really I do. But (I think) there is a huge qualitative difference between being worried about a near-death experience in a hospital and the normal everyday worry about one's kid being hit by a bus. I always tell my own mom to never, ever go research the various things that Woody's been diagnosed with, but I can't take my own advice. So, for example, when I got the diagnosis of the PIE the other day, of course I went out and googled it something fierce. And that's just not a good thing.

But it looks like the roller coaster that is micropreemie care in the NICU is on one of the welcome upswings. Yesterday's news was all good, and this morning things look good too. After I posted yesterday's updates, Woody got moved back from the oscillator to the normal ventilator, and is tolerating that well without any bad blood gas readings that cause the doctors to scramble around figuring out what the deal is. Also, he is being weaned down in terms of pressures and O2 saturation again for the ventilator, which is good, and he is off the blood pressure medication again.

Just like that, it seems like we're back on the imaginary flow chart of preemie care, where we can start thinking about priming the gut for feedings again and stuff like that. Of course we still have a long way to go, even on the lungs. The nurse and I were joking yesterday about how if we can just kick the PIE issue then we "only" have to deal with the "normal" Chronic Lung Disease that he's fighting off. *sigh*

Oh, and check it out: Woody has all the leads now on him like a normal preemie:



Click the picture to see the tags.

A brief note on Maggie: she had her checkup yesterday, and the doctor is happy with her recovery so far. We also got back a lot of test results, and she doesn't have any chronic conditions that would have caused this. In other words, we have no idea what went wrong with the pregnancy, and aren't likely to be able to predict anything happening like that in the future.

I'll take it!

After posting yesterday's update, I went and listened to the doctors and nurses discuss Woody while on rounds, and heard that they had settled on a partial diagnosis for what is causing his recent respiratory difficulties. It's a condition that used to be very common in micropreemies but is not seen so much nowadays called Pulmonary Interstitial Emphysema (PIE). In laymanspeak, PIE is where air gets trapped in the space between the little sacs (alveoli) and the lining of the lungs. This is Bad, as it causes difficulty in making the oxygen and CO2 exchange in the blood cells, as well as making it likely that the air trapped there will escape into the other side of the lungs, which can cause holes in the lungs and can precipitate total collapse of respiration.

I didn't like this diagnosis very much.

Nonetheless, the doctors decided that to treat this, we were going to try to decrease Woody's ventilator pressures and then give him a steroid to decrease the lung inflammation, as well as continuing with the diuretic to get him to decrease the fluid in his lungs. When I went back there last night, I learned that he had not responded well to decreasing the ventilator pressures, which meant that we were down to relying on the steroid and diuretic to try to get the PIE to lessen. I went back to the farm with a heavy heart and found it difficult to keep my normally very hopeful mindset.

However, this morning I was met at the hospital with some long awaited good news: although Woody's lungs still looked "hazy" there is definite improvement visible in the PIE pockets of air. He remains still a bit puffy with retained fluid, but the diuretic is keeping his urine output at torrential levels. Overall, the nurse (and I must point out that this is the same sour-faced nurse I was complaining about yesterday) was pretty upbeat about him this morning, telling me that he was "head to toe better". I was waiting for good news yesterday, and although this is far from saying he's cured, I am definitely happy to hear that there is some positive progress being made.

Maggie is doing much better, and has her post-surgical followup today with the doctors who performed the c-section. We are also moving her back to our house from the farm today, and that will mean that she can spend more time at the hospital. Thanks for all your concern and prayers. It really does mean a lot to us.

Waiting for good news

Woody is a sick kid. He has had continued problems with his lungs and as noted yesterday, the doctors are trying to do what they can to address his issues. I am at the point now when I'm going for all the good news possible, so here it is.

• His oxygen needs are pretty stable, and in good ranges (almost always below 50%). That's good!



• His pressures needed to keep his numbers up is not having to be raised too much; in fact, it's down a little bit today. That's good!



• The main person on the staff that tells us that things aren't improving is a sour-faced intern, who has told us negative news that didn't pan out before... since we can't trust what she says, it's good, right? (right!)



• Woody's troubles now are pretty routine for little preemies. It doesn't seem like he's having anything out of the ordinary. Which is good(!).

Well, I am waiting for good news at every turn. I know Grammie was scared by yesterday's post, and she has nominated "white-out" as a banned word, which I can agree with. But the truth is that micropreemies just have trouble with their lungs, and they're doing the best they can. He doesn't seem to be in any immediate danger, and we're just going to have to wait for things to get better, which I remain very confident they will. Thanks for the support and prayers, and in Jeron's case, for mowing my lawn.

Oh, and one other piece of good news... Woody opened his eyes yesterday.


Which is good!

All about the lungs, baby

Babies are not supposed to be born at 23 weeks, 2 days. Most of their life support systems are not ready to go, but the primary issue is the lungs. As noted yesterday, Woody has been having recurrent issues with his lungs, which makes it difficult to move him up farther on the imaginary flow chart that it takes to make a preemie more healthy. When you see his chest x-rays, instead of nice dark areas within the lungs, he has had "haze" in the lungs, which isn't so great. Now we're up to "white-out" in the lungs, as they say, and that's bad.

So what can cause lung white-out, you say? Here are our options.

• Infection. This is possible although not necessarily likely. The doctors have ordered blood cultures to see if he has bacteria running around in there, and as a precaution they're starting him on antibiotics. If I had my choice, this is the one I'd like him to have, frankly, because at least you can treat it right away.
  


• Chronic Lung Disease. This, as mentioned before, is probably close to inevitable with a kid his size and age, but it's a little early yet to make a diagnosis of this. As the name implies, it's a chronic condition and about all you can do is keep him comfortable and with as much oxygen as possible and hope that he can get strong enough to build new lung tissue and fight off the damage.
  


• "Wet lungs". This disgusting term is what the doctors call a scenario where he's retaining fluid in the lungs, making it more difficult to keep his lungs fully inflated and exchanging oxygen and carbon dioxide. This appears to be the most likely of the possibilities, based on his response to the oscillator versus the normal ventilator; the oscillator does a little better job forcing his lung pockets open and keeping them that way. To deal with possible wet lung, Woody's getting a round of Lasix, the diuretic used famously on race horses to mask steroids. Which means he may, yes, need to piss like a race horse.
  


• The ductus again. The medical team doesn't think this is likely, but if the ductus is periodically popping open and shut, it can allow fluid or even blood to backflow into the lungs. Which wouldn't be so great. If this is the issue, it's not playing very fair with us, because the echo shows it's closed and the characteristic murmur hasn't been heard since the last round of the drug used to close it. However, these things can flap open and shut with little warning, and the oscillator is so loud it makes it more difficult to hear the murmur. So it's back to watching and waiting again.
  

As the nurse told me yesterday, this just is his life right now, and we're in for a long summer. Oy.

Another trying day

I sometimes wonder how much of what seems like a bad day has to do with when in the day we show up to visit. This morning, for example, I was there for rounds and the doctors and nurses were going over all of his charts and deciding that things looked pretty good and had a positive, upbeat demeanor. Meanwhile, even as they are saying this, the nurses were switching Woody's position and all kinds of alarms, beeps, and buzzes were going off and the nurses seemed like they were frantically trying to make sure that they were addressing each one in turn. I had the oddest time wondering whether I should believe the doctors in front of me or my senses to what was actually happening at that point in time. And yet even as all hell seemed to be breaking out with Woody, the doctors agreed to try to take him off the oscillator, cut his BP medicine (which was back on again), and agreed that his ductus was closed again. (Note: I don't know whether that is good or bad news.)

Similarly, when I arrived this evening, Woody's blood gases were doing poorly again and the team decided to switch him back onto the oscillator. So within five minutes of getting there, five nurses, two respiratory techs, and the on-call doctor were all crowded into the room paying attention to all the beeps and buzzes and alarms and his oxygen was up all the way to 100%. I was not happy with this turn of events, especially when one of the nurses told the doctor that the recent chest x-ray had come back with significantly more haze than before.

The doctor, who was just kind of watching the action, turned to me and asked if I was the dad. Yeah, I said, and I'm sure he could see that I was at least highly worried, if not actually freaking out.

"This means nothing."
But what about his bad x-ray?
"That just means he liked the other ventilator better. He just doesn't like the pressure ratios of the normal ventilator right now."
So the hazy x-ray doesn't mean any actual damage?
"Nope."
So what about the beeps and whirs and buzzes?
"We'll switch him to the oscillator, and he'll be stabilized within an hour on the same good blood oxygen as before, good blood gas numbers again, and we won't even really remember that this little incident happened."

As I write this, it's been an hour and a half, and he was just completely right about everything. Which makes me wonder, if I had gotten here now instead of when I did, I probably would have been none the wiser for something that the medical team didn't even consider to be that big of a deal.

I guess the conclusion is that if I had timed my visits better today I would have considered this a great day. My take as I sit here is that today was a bad, trying day. For me. And I'll take that, I guess.

Fun amongst the anxiety

Allow me a post to ramble for once. I want to make three points.

First, Maggie and I bade my mom (Grammie Hobbs) good-bye tonight and then welcomed my dad and Sherri in here a few hours later. There has been some level of discussion between Maggie and I about the issue of what to call those who are married to the "natural" (for want of a better word) grandparent. I am sure this is a common issue for those who live amongst blended families. Maggie and I are in agreement that it does not diminish the contribution of the biological parent to share the term "grandparent" as long as the, uh, target of this name is comfortable with the title. Therefore, Sherri can be grandmother and Ralph can be granddad and Woody will be the richer for it. We shall definitely tell him plenty of stories about Granddad Jerry and Grammie Hobbs doesn't lose her unique and special place by sharing the wealth of love in the family.

Second, it is a hard thing to be in the situation that Maggie and I are in. A week and a half ago, we thought we were having a more or less normal pregnancy and had barely even thought about some of the nuts and bolts decisions about actually having a child. We didn't own a single thing for children prior to going to the hospital the night that Maggie was admitted. So we had our idea of how the birth was going to play out get completely shattered in the last two weeks, and it's been hard. I can't necessarily speak for Maggie, but I can't help but feel a little (ok, maybe a lot) resentment when I see parents that don't seem to realize how lucky they have it. I know it's not fair, but there it is. I guess what I'm saying by getting this off my chest is just that if you have healthy children, don't take this for granted. Hug your kids if they aren't in an isolette.

Finally, it's also just kind of hard to maintain a continual crisis mode with the worrying about stuff. I wonder how long anyone can go being afraid of the phone ringing, or just being anxious all the time. I for one do my best to try to stay loose and have a good time, and enjoy my time as a parent so far. It's been really good to have my family visit the last week for that reason, because without a little fun amongst the anxiety I think it would just be unbearable.

With any luck, we'll hear about the echocardiogram results tomorrow morning.

Duck, Duck, Gray Duc(tus)*

Yesterday was a classic day of how the life of a micropreemie operates. Get some great news first, then some less good news later. Today I got a more complete picture of Woody's recent difficulties. His blood pressure is having problems again, he remains on the oscillator, but most importantly, his ductus appears to have opened up again. The nurses heard the characteristic murmur again last night, and an echocardiogram this morning confirmed that it is indeed open.

This can be looked at two ways. First, the bad way: the ductus issue can be very dangerous in and of itself. It makes the heart work harder, can cause sinking blood pressure, and can make fluid and in the worst cases, blood, to back up into the lungs.

The good way to look at this is that at least there's a diagnosis that explains why his lungs were having to work so hard yesterday to keep his CO₂ levels down, and why his blood pressure is down today too. If we can solve the ductus, then the hope is that his lung issues can start to deal with themselves as well.

So here's the rub: they are giving Woody another two doses of the drug that temporarily closed up the ductus last week, and hoping that it works again, at least for a while. If that doesn't work, we'll be looking at surgery on Monday or Tuesday. This is a very frightening option with a baby of Woody's size, but I am told that it is actually quite common and has risks far less than the alternative. So if it has to happen, it has to happen.

While we are waiting to resolve this issue, the feedings are suspended and little else can really be done with him. So we just have to watch and wait.

*One of the outstandingly quirky things about Minnesota is that this is perhaps the only place in America in which the kids do not play Duck, Duck, Goose. Instead, they play Duck, Duck, Gray Duck. "It" goes around the circle and pats various people on the head saying (for example) "Pink Duck, Blue Duck, Grrrrreen Duck, Plaid Duck, Fuchsia Duck" until they get to the chosen victim, and then they say "Gray Duck" which is the trigger for that person to get up and chase them. Yeah, it's pretty weird.

It's always something

It feels like no sooner that I write something about great news that there has to be some countervailing bad news to equalize it. Although Woody's brain scan came back clean as a whistle, I was called back up from the farm by NICU this evening because his blood gases (CO₂ mostly) have been trending bad since about the time we left this afternoon. As a result, Woody has been switched to a different ventilator, a large and obscene behemoth referred to as the oscillator. The theory behind this contraption is that where 50 breaths per minute are not doing the trick, why not go up to 700 micro-breaths per minute?

I'd love to have been in the developing room when the doctor proposed this. "Yeah, let's try pumping a whole lot of tiny breaths into the super-duper preemies and see if that does the trick!" "Sounds great, Ted."

Anyway, It's worrisome but so far Woody looks like he's responding very well to it. They've been able to decrease the oxygen in the air they are giving him to just above 30% (remember that 21% is regular air), which is pretty good, especially if you consider that when his blood gases were doing poorly earlier they were cranking up the percentage well above that. This most recent crisis has also temporarily put a halt to his introduction to food, which is frustrating too. But this is exactly as we were warned: even in the best of cases, there is a maddening back and forth where one problem looks like it is addressed and then the next problem crops up, or we move back a step or two in the flow chart and try to get something we thought was taken care of rectified again.

As seems to be usual, our primary worry for those offering prayers is the lungs. This will continue to be the main worry, if we are lucky, for weeks or months. Thanks for your support.

...and for our next miracle...

The day before Woody was born, I had a doctor lead me on a walk-through of the NICU there and tell me generally what we could expect. I saw the phototherapy lights, monitors, and the rooms, and learned enough to know that we really didn't want to deliver the day we did (and up to about two hours before, we still thought that Maggie was stable enough to delay for at least another week or two).

One of the things she told me to prepare us was about the possibilities of the intercranial bleeding; many if not most micropreemies (Jared thinks this sounds a bit pejorative, and suggests perhaps "gestationally challenged") have some degree of intercranial bleeding that can pose later challenges with their neurological development. Well, we have the results back, and have learned that Woody apparently has no bleeding at all. This is beyond fantastic.

When I first saw the kid, my thought was that the doctors were going to have a really rough time doing anything for him. He just seemed so small and fragile, and I knew how tough it was sometimes just to get them to breathe, and then to get a tube in their throat for the ventilator, and then to get the lines in their umbilicus to take blood and also to give nutrients. Upon those successes the first night, I realized that Woody was already up three (or so) miracles, and that there was, in fact, hope. I feel affirmed in that today, even though he still has so many challenges to overcome just to become a normal baby.

Thanks again to everyone for pulling for us and your prayers. We have so long to go yet.

Maintaining perspective

In all of the excitement of keeping everybody up to date about Woody, I forgot to mention one really good piece of good news-- Maggie got released from the hospital yesterday. Her platelets and her blood pressure took a little while to reverse course and get better, but they are now under control enough to let her out of the sight of the doctors. This was a big relief to me, and I have told her that now that she's out of the hospital I now do not have to worry about her anymore.

Of course, I was kidding. I still feel pretty protective of her, and even though she feels better she has a tendency to overdo it, and then she gets really tired and sore, so I try to make sure that she's taking it easy.

Woody's had a pretty uneventful day, which is good. I just worry about his lungs a lot, especially because they were telling me a couple days ago that they were going to try to wean him from his respirator and now they're saying that is not going to happen for another few days at the earliest. On the other hand, part of the reason is that if they have to re-intubate him it can carry some not-insubstantial risks of hurting his sensitive trachea, so they are likely to be pretty conservative with that process. He has so far not had any problem with the tube feedings, although there is not any definite sign of digestion either. We remain in wait and see mode on that point.

Tomorrow is a pretty big day for him, as his head ultrasound is scheduled. Pray-ers, pray. Finger crossers, cross fingers. Visitors to Buddhist temples in Mongolia, well, you get the idea.*

*One of mom's friends is in Mongolia, and has been staying up on Woody's progress from there, and offered up a prayer from a local Buddhist temple.

Banned Words

Upon Maggie's entry to the hospital, her vitals were surprisingly bad. She was diagnosed with HELLP syndrome, which is an acronym for Hemolysis, Elevated Liver enzymes, and Low Platelets. They gave her some drugs, and she got very much better for a couple of days. However, the doctors remained very worried about her and said that this was probably just the "Honeymoon Period." I maintained hope that they were wrong, but it turned out it was exactly right. On Friday, her vitals crashed and they had to do the emergency C-section.

Upon Woody's entry to the NICU, they warned me that preemies tend to have a Honeymoon Period too, where they seem like they're doing fine, but after a few days they get more twitchy. I was met this morning with a report that his honeymoon was over, as he has gotten more and more sensitive to disturbances, requiring a bit more oxygen every time he has to be disturbed for a test or a diaper change or anything. Naturally, that got me worried again, but it was exactly to be expected.

Nonetheless, I hate the term honeymoon period now. If I never hear anything referred to as that again it will be too soon. But all things considered, Woody is still doing "extremely well", according to the doctors. He's maintaining good blood C0₂ levels, he's kept his glucose levels stable without intervention for a couple of days now, and his PICC line (the IV line that they installed yesterday) moved itself overnight into the right position, so they aren't going to have to do that to him again for a while.



Check out those feet.

A better night

I walked into Woody's room tonight and was talking to his nurse. "How's he doing," I asked, like I always do. She told me he was doing fine. I checked all his numbers; his blood oxygen levels, his blood pressure, his ventilator settings, and how he looked, and sure enough, he looked about the same as before. "I'm glad to see that, since he had a tough day." She looked at me oddly and then said rather emphatically that he had not had a tough day at all. I like hearing stuff like that because it puts it in perspective. Sure, his x-ray was showing some haze, but it's not really worth worrying about now, because it can mean a lot of things. Also, to be entirely realistic, Woody is almost inevitably going to have some degree of chronic lung disease for his time in the NICU. Micropreemies are born with undeveloped lungs, and they are just not ready to breathe normally. That does not mean he won't be a normal little kid; it just means he's going to have some challenges before he can go home.

Woody's new IV line is not in the perfect place, but it's good enough to give him fluids and some nutrients, and he's doing ok with the small amounts of milk they're starting him on (for yet another perspective on how tiny he is, they're starting him on half a cc of milk every other hour. Uh, yeah, that's pretty tiny). Also, they managed to give him a little blood transfusion before the vein line worked out of his umbilical stump. I'll sleep a little better tonight, I think.

Preview of tomorrow's worries: will his digestive system start up properly? Can he start to be weaned off his ventilator? And the big head ultrasound is Friday, and then we'll see what, if any, degree of cranial bleeding he may have had after birth. That can be a decent predictor in many, but not all cases, to predict later neurological issues.

Thanks for all the well wishes & love & prayers. Maggie and I really, really appreciate it.

Ups and downs

Morning five. After the great day yesterday, it should not come as a surprise that not all is going as well today. Upon his birth, one of the NICU doctors warned me that even in the best cases, micropreemies always seem to progress in fits and starts and not to be too worried when there are setbacks. Today's involves his lungs, always a concern with any premature baby. They had thought yesterday that they might try to start weaning Woody off his ventilator, but he has not shown that he's ready to do that yet, and his chest X ray this morning shows a little "haze", which can mean a lot of things.

The other concern today is that the vein line in his umbilical cord is coming out, which they aren't too happy about because the lines they put directly in him are so thin that they can't give him further blood transfusions, which will require situational sticks for that purpose. But that is not a huge concern yet.

On the brighter side, they are going to give him a tiny amount of mom's milk today to prime his digestive system for future feedings. And he is still not requiring much oxygen, so I am still optimistic about the long term prospects for his lungs.

In short, members of the World's Largest Prayer Chain^TM should pray for his lungs first and his new IV line second. And we are thankful that his glucose and blood pressure seem to be doing very well still.

Woody is 24 weeks gestational equivalent today. Or as I have jokingly referred to it, now he's minus 112 days old.

Latest Medical updates

As noted earlier, all the news has been good today. Yesterday's worries were centered around a couple of things. First, most micropreemies (that's a premature baby born before 25 weeks of gestation; Woody was a 23 week 2 day) are born with their ductus vein still open. The ductus is a blood vessel that bypasses blood around the lungs prior to being born, but usually closes up in babies that go closer to term. The problem with an open ductus is that it causes a heart murmur and can make the heart work too hard, depress blood pressure, and can even cause blood to back up into the lungs. Yesterday Woody got a dose of a drug designed to close that up, and the echocardiogram this morning confirmed that his ductus has indeed closed. This is great.

Second, Woody was taken off his insulin drip this morning, which he was given to keep his glucose level down. So far it is holding where we want it to. This is also great.

Finally, Woody has been on a drug to keep up his blood pressure since day two, and was taken off it this morning. So far he is doing great with that too. Which is fantastic.

Tomorrow's worry preview: The doctors want to try to wean him off his ventilator starting perhaps tonight but more likely tomorrow night. If he stays on ventilator too long, it increases the risk of chronic lung disease later. If he goes off, then there is increased danger of a type of apnea (cessation of breathing). Basically, babies his size are so undeveloped in their life support systems that sometimes they forget to breathe. He will be watched closely to make sure this doesn't happen.

Second worry is that the doctors are going to try to give him his first digestible food tomorrow or the next day, assuming that his bowels start working. This is obviously important to start, but can also introduce some new concerns.

Finally, I worry that any one of the earlier troubles that have shown such great progress will recur, setting us back. The doctors have been very forthright about letting us know that even in the best cases, there are setbacks and steps forward on a near daily basis. I know that not everything can go perfectly, but I am very hopeful so far.

First post mark II

So I have used my considerable internet savvy (hah!) to create a Woodyblog that gives me a little more say over the content. I'll keep the Guestbook going on the Caringbridge site, but otherwise, I think all the posts are going to go here.