Wednesday, January 28, 2009

Evening Update (Wednesday 1/28)

Max had another fair-to-middling day today. He spit up some in the morning (those darn vitamins again) and was clearly in pain from reflux at a late afternoon feed. One of the nurses has an infant at home with reflux and told Carolyn that her kid sometimes cries for three hours straight. And, of course, most babies spit up a little bit, hence the ubiquitous towel-over-the-shoulder look sported by parents everywhere. But it was still difficult to see Max in pain, and of course his breathing remains a little labored.

Speaking of which, Carolyn reports that Max's breathing was a little easier today than it was yesterday. He had some desats in the morning but none in the afternoon. While still pretty fast, his breathing was slower than yesterday and he retracted less severely. (Retracting is a characteristic movement of the chest that indicates the baby is working really hard to breathe.)

The audiologist tested Max's hearing: he passed, although like all preemies he'll have to be tested again in six months. The neurologist is dropping by for a routine evaluation tomorrow; he'll take his own look at the most recent MRI. And Carolyn and I are scheduled to have a "family meeting" with the attending, Dr. S., on Friday. Previous family meetings have been tense affairs, mainly because they took place in the midst of various crises. This family meeting promises to be less dramatic, more routine. We'll evaluate Max's progress along the path the NICU team laid out for him.

Overall, Carolyn and I are feeling some NICU fatigue. Maybe we became habituated to Max's early daredevil antics where he would teeter on the brink of some medical disaster (hydrocephalus! head bleeds! NEC!) and then gather strength for an amazing recovery. Thus, his current slow and halting progress is frustrating. The same kid who confounded the neurosurgeons just hours before they were going to crack his head open should be able to master eating and breathing in a snap. We'll find out more of the NICU team's opinion at the family meeting on Friday, but Max's progress feels to me like the slow end of normal for preemies; this is a huge improvement over the high-wire act of his early weeks, but, with many of those problems waning, it seems like time to bring him home.

We have his room all ready for him. Crib, soothing music, interesting mobile, coffee maker for mom and dad, it's all sitting around gathering dust. Max has come a long way since he was born, he's done a lot of work, all he has to do is take a few more steps and he'll have finished his part and he can let his parents start doing theirs.