Thursday, February 5, 2009

Evening Update (Thursday 2/5)

At rounds this morning, Carolyn, having done her homework, was able to catch an error in the resident's presentation (Max did not lose 90 grams last night, he gained 90 grams). Having seen the dynamic yesterday, I can say that this particular resident is new to the NICU and, to my eye, is quite clearly terrified of Prof. Hill. No doubt she's having flashbacks to medical school.

Max did a lot of vomiting today: twice during the day and, according to nurse B. (hooray! B. is back again!), once tonight. A couple of times he vomited on an apparently empty stomach, producing mucus. (B.: "I don't know where that's coming from.")

Carolyn is quite frustrated that Max's schedule, two hours of feeding every three hours, leaves essentially no time for normal baby interactions. While his feeds are going in, he's clearly uncomfortable and prefers to sleep. In one of the golden hours, Carolyn tried to rouse Max and do some physical therapy, but he was quite drowsy, and then vomited.

In addition, we're growing increasingly concerned that Max is losing oral competence because he never has to use his mouth to eat. The NG tube itself can cause oral ability to deteriorate. The NICU team has a plan for Max that could take another month: first, some time to let him adjust to the new medical regimen and then to see if that cures his reflux. If not, this is followed by a two week course on an "elemental diet" to see if maybe Max's reflux is caused by a milk allergy. Max came into this world on an unseasonably warm October day, we don't want him to leave the hospital having missed one of the coldest winters in a while. The NICU team and the insurance company have mentioned the possibility of an extended stay in a nursing home for infants--sort of an even more stepped down NICU. This place would be exactly like the NICU for Max, with the idea that he would spend months and months there getting control of his reflux and learning to tolerate compressed feeds.

The developmental costs of continuing on the present course are much clearer to us now. We have to weigh these against the risks of surgery, and the chance that the surgery won't, ultimately, work. We've been learning as much about the Nissen as we can. It's barbaric surgery, a sort of elegant mutilation of the stomach and esophagus, and it's only practiced in the modern world because of its good track record.

All of that said, Max did suck successfully on Carolyn's finger today. One time, he got his Maalox dose while sucking on Carolyn's finger: nurse J. used an eyedropper to slowly feed it to him as he sucked contentedly . He got them all down without showing obvious signs of respiratory distress. When I hold Max now I see a baby who has made it almost all of the way back from the distant dark outer reaches where he started. My view is that the secret of the NICU is that the babies do all the work. But maybe we can help Max over this hurdle so he can finally burst into the world and let us do the work for a while.