Evening update (Wednesday 2/25)

When Carolyn arrived at the NICU this morning, she found Max wearing a hospital-provided outfit because he'd soiled all of the outfits she had brought for him two days ago. Along with having volunteers hold your child, this is one of the failures that NICU parents use to judge each other. After four months, we feel that we're due a little a few allowances.

At his morning physical therapy session Max was bright-eyed, alert, smiling, grabbing at things and generally having a good time. The therapists have now attached a ring to Max's pacifier so he can practice grasping it and keeping it in place himself.

Max wasn't interested in a bottle at noon; but he took 10 ccs at 3:00 PM. Carolyn held him very still for the rest of his feed and for half an hour afterwards (Max was very sleepy after his big morning). But just as she was putting him back to come home, Max vomited up a largish amount of milk.

Carolyn also got to insert Max's ng tube--this is the tube through his nose into his stomach. She had noticed that it appeared to be misplaced and that it had been in for more than a week and so needed to be replaced. As the NICU team pointed out, we're going to be placing the tubes ourselves sooner or later so we might as well start now. Passing the tube down the esophagus is an art, but Carolyn seemed to master it. In addition, one checks the placement of the tube by puffing air from a syringe down it and listening (with a stethoscope) for a blast of air in the stomach.

Although Max is vomiting fairly regularly, the NICU team agree that he appears to be thriving (this is a technical term in neonatology, but I still like its positive ring) and he is well-proportioned. Well-proportioned, excluding his huge head of course, but big heads run in our families.

The complete evaluation from the pediatric neurosurgery service isn't in yet, nor had Max been seen by the attending. Nonetheless Carolyn spoke to Dr. R. about her reading of the results of his recent CT scan. In the past, we've gotten good news from the NICU team only to have the neuro service render a much bleaker assessment, so we're taking Dr. R.'s view as strictly provisional. Nonetheless, it was pretty positive. She characterized Max's hydrocephalus as "stable", reported that she saw brain growth and that she saw interaxial space (that is, space between the brain and skull). All of these findings are tentative, but if they hold up they don't point to a worsening of Max's hydrocephalus. It may be some time before we get the official word from the neurosurgery team because, as Dr. R. put it, they have "about a million of Max's records to review". True, he is developing a big file. Although we haven't met the new neurosurgery attending, we've heard good things about him from nurses, staff, and other doctors.

The NICU team had their regularly scheduled "discharge rounds" today, where they evaluate their patients' progress for release. Assuming that he is cleared by the neurosurgeons, Max may be a strong candidate to leave the NICU sometime soon. He may come home, or he may go to HSC's "preemie express". There is a bed open at HSC; Carolyn and I will visit some time in the next couple of days. Even while waiting for the neurosurgeons to sign off on Max, the NICU team are preparing him for transition away from the NICU. Dr. R. and the NICU fellow tried to compose a feeding schedule that was a little more humane, in the sense that it had longer gaps during the night while giving Max the same amount of food in any 24 hour period. It's a fairly complicated math problem: Max can't tolerate feeds faster than a given rate, his stomach can only hold a limited amount and so on. The doctors were clearly stymied when Carolyn volunteered to compose a schedule for them. Everyone present agreed that Carolyn probably knew more math than they did and gladly handed over responsibility. Cj just showed me the spreadsheet she composed. I have to say that it's a masterpiece, but a daunting prospect to think about actually implementing.