Midday update (Tuesday 12/16)

The NICU team consider last night's measured head growth to be normal (after all, Max gets 0.5 cm/week and it's been about a week since his head grew from 34.5 to 35.0). They're also not seeing other signs of increased ventricular distention such as a bulging fontanel. Dr. M., one of the gloomier attendings, felt his fontanel and pronounced it "fine". He also told Carolyn not to be too optimistic just because the neuro service signed off on Max: it just means that they won't visit him every day on their rounds. They've still got an OR warm for him, I suppose. Dr. M. also pointed out that Max's breathing and eating problems could be related to hydrocephalus.

Today's bright spot is provided by the poop journal: the boy seems to be getting the hang of it, although it still seems to take him a lot of red-faced straining. He's delivered plenty of dirty diapers over the past 24 hours.

And now, on to the rest of the morning's developments.

Carolyn reports that today's speech therapy session did not go well. As a reminder, speech therapy is not about elocution at this age. It's about getting the mechanics of suck-swallow-breathe right. Max did well on stage 1: sucking, but then when given a bottle containing actual milk he responded with a brady/desat. The speech therapists take this seriously because it could be a sign that the milk is going down the trachea. Dr. M. was not comforting as he watched this performance. He insisted that Max has "got to get himself together" and that half-measures such as practicing sucking with a pacifier wouldn't be sufficient. (Later, the speech therapist clarified that some practice with a pacifier might be good for Max. He's actually not that good at sucking yet.) In the past, NICU docs and nurses have told us that learning to eat is like flipping a light switch: one day they're not doing it, the next they take to it like ducks to water (or babies to milk). Today's NICU team didn't have any such reassuring words for Carolyn. Dr. M. was quick to remind Carolyn that babies with neurological issues can have trouble eating.

Next, Max's breathing problems. To review, Max has trouble maintaining his oxygen saturation levels in the required range. In addition, his breathing often feels labored--far too deep and fast. In the past, his breathing problems were related to his GI issues. Indeed, during the worst phases of his GI freakouts he had to have respiratory support. Now he is without respiratory support, and the last of the caffeine is leaving his system. (My own theory that Max is going through coffee withdrawal has been dismissed with the curt observation "babies metabolize caffeine differently than adults"). Carolyn felt that Max's breathing seemed more labored today. The apnea study that the NICU ran over the past two days revealed that Max has "disorganized breathing". Dr. M. was quick to remind Carolyn that babies with neurological issues can have trouble with organized breathing.

In other news, the NICU team have decreased the time over which Max's feeds are pumped into him to 30 minutes, down from 45 minutes. Max didn't tolerate their previous attempt to go to from 60 minutes to 30 minutes; we'll see how he does this time.

So what's going on? Some depressing possibilities are that Max's disorganization isn't temporary, that it's related either to some underlying process in his brain or to his hydrocephalus. Additionally, instead of a single unifying reason for all of his problems, I worry that he has trouble eating and stooling because of a neurological deficit, and trouble breathing because of a mysterious problem with his lungs, perhaps the same problem that his sister had.

A benign view--one that I favor--is that Max is slow to learn everything: how to pass stool, how to eat, and how to control his breathing. Could be related to his hydrocephalus, or it could just be the way he is, and that--here's the important part--he will eventually figure everything out. He's had a very rough 7 weeks . The Great NEC Scare hit about three weeks after he was born and lasted until last week.

As Georgetown's Christmas present to us all, Dr. M. will be the attending on call through the holidays. Sure he's dour, but the man does grow on you after a while.