Friday, February 27, 2009

Evening Update (Friday 2/27)

There were several exciting developments today: Carolyn took Max out for a stroll, the NICU team have signed off on transferring Max to the HSC, and Carolyn and I took a tour of the HSC.

Today Carolyn made good on the NICU team's promise to let Max out for a stroll. The obsessives of the NICU of course made sure that Max was completely surrounded by blankets, with the attending herself, Dr. R., supervising the procedure. Even after Max was more than adequately cushioned, she insisted on a few extra blankets, so that Max was thoroughly protected from drafts, rain, sun, dogs, bees, crazed drivers etc.

Getting ready to go out for a stroll

Once he was outside, Carolyn posed for a picture with Max. That's the front door to Georgetown University Hospital in the background:
Out for a stroll

The NICU team insisted that a medical professional accompany Carolyn and Max; for a time it seemed that one of the medical students would be chaperoning Max. But in the end Dr. R. couldn't resist the temptation:
Out for a stroll with Dr. R.

The weather today was the same as the day Max and Ada were born: humid and unseasonably warm. While he was outside enjoying fresh air, Max got to see the outside of the NICU (the windows on the third floor):
The NICU from outside

The NICU team have agreed to let Max leave the NICU. However, realistically speaking, Max is far from being ready for the world. The pediatric neurosurgeons still consider Max a borderline candidate for a shunt, and want him followed closely. His head circumference is now officially off the charts, so he'll be evaluated by feeling his fontanel, looking for sudden increases in head circumference and watching him for neurological symptoms. Max is nowhere close to feeding himself; he will be tube-fed for some time to come. In addition, he still needs an hour to tolerate a feeding; any faster and he vomits back too much food to thrive. All this to say that Max still has a lot of work ahead of him, but he's accomplished quite a bit over the past four months, and he deserves some reward. He's medically stable; he hasn't had a major desat for more than a month; he's managing to get some food in by mouth and, if he isn't getting his nourishment in the standard 15 to 20 minutes, he's doing much better than the continuous drip he was on in January.

With all of this in mind, Carolyn and I took a tour of the HSC, home of the famous "preemie express", the transition vehicle for many babies from the intensive care unit to the outside world. Because the HSC is like a nursing home for children, Carolyn and I were braced for a depressing experience. We resolved that if it was too grim we would take Max home and manage his care ourselves. The HSC is in a charming 1920s-era mansion with rambling, steepled roofs and freshly painted white stone walls with blue trim. Inside it has high ceilings, Frank Lloyd Wright furnishings and architectural details and many tall windows. The nurse to patient ratio is the same as in step-down NICU and there are many more therapists. The rooms hold only six babies each, and are free of the constant alarms that have formed the background soundtrack of Max's life. I wonder how long it will take him to adapt to a soundscape made up of only babies and parents?

The HSC, of course, is far from a paradise. There are sad stories everywhere you look. But Carolyn and I have been hardened by the NICU. These stories are less sad than the NICU's: the patients are struggling but progressing and the parents look less frantic. The older children at the HSC are a vision of what Max's future might be like. It's nothing we would have chosen, but if he makes it to the HSC, Max will have beaten long odds.

The only remaining fear that Carolyn and I have is that the HSC staff haven't yet fallen under Max's spell and thus will, at first anyway, treat him like a normal baby. At the NICU, by contrast, the fact of Max's likely departure has finally sunk in. Max is now receiving a parade of visitors coming to say good-bye to him. Carolyn is assembling and delivering parting gifts. The coterie of coffee enthusiasts got several bags of Peet's Major Dickason's blend today. But that's just the start of the gifts. One of our earliest memories of the NICU is nurse B., in the very darkest hours of the night, collecting change and dollar bills from her colleagues and taking orders for a run to the basement vending machines to get snacks. These snacks are as insalubrious as you might imagine: we were never able to tolerate them ourselves. Carolyn went by Trader Joe's this evening and bought enough nuts, fruit strips, and other appetizing snacks to power a scout troop for a weekend's camping. These will be delivered in a tasteful wicker basket the size of a compact car. And I am sticking it to the RIAA by burning copies of The Philadelphia Chickens CD--a sovereign remedy for cranky babies--for all the pregnant staff of the NICU (that is, about half of them).

Carolyn have debated whether to wait until Max is actually getting transferred to deliver our gifts. The NICU exerts a malign gravity and no patient is truly out until he's tucked away safe in his own bed somewhere else. But with a bed set to open at HSC on Monday, everything looks set for Tuesday to be Max's last day in the NICU. I wonder if, in the future, we will celebrate his birthday on March 3rd?