A Star is Born, part three: Over the Rainbow

Last year I started a journal that I'd hoped to show the boy later as he grows. This blog has turned into that record of his growth and development (but an excerpt of that journal is included below). I posted two other portions of his birth story last spring that you should read if you haven't. My wife's ordeal that ended up in a five week hospital stay before labor is related in part one, and labor and Alexander Brent Wescott's birth on November 15, 2010, constitutes part two. Romantic stuff.

Part three is to be read to the tune of Israel Kamakawiwo'ole's "Somewhere Over the Rainbow."

When Xander was born premature at 34 weeks, within a couple of hours it was clear his lungs hadn't developed enough to handle his own breath, so he was intubated with a CPAP mask that covered most of his face. That mask only lasted a day, but the ventilator tube remained down his throat for a week. Over the next few days, he was slept in phototherapy for jaundice, put on pain killers to ease the abrasiveness of the ventilator tube, and received chest x-rays every day to determine his lung capacity.

This is after the intubation was over, with the CPAP mask on.

We parents were able to change his diaper and touch him--preemies like pressure, not stroking--but he was to stay in his warmed incubator sleeping for as much as possible. I did the changing. Mom did the worrying.

What they didn't tell us until later was that he had developed pneumonia during those first hours after birth. During the first two days, he actually got steadily worse, with the amount of oxygen helping him breathe increasing as much as it could and the x-rays indicating no change in the condition of his lungs. The steroids they gave him shortly after birth weren't clearing them up like they were supposed to. 

He was a sad clown in black light. Jaundice will do that do a guy.

The only hint of the severity of this situation was from the night nurse on Tuesday who told us that there was nothing else to do once they increased the oxygen flow as much as they could. After that, they just would wait to see what happened. We didn't know until later that some of the staff were actually afraid he wouldn't make it.

The next day, however, he began to turn around. 

What follows is from my journal during the next month:

          Sunday, November 22, 2010

Today Xander was extubated from the ventilator, weened off of the Fentanyl, taken out of the Billruben phototherapy, and the IV line in his right hand was removed. He still needs a cannula around his nose for oxygen and he also has a feeding tube up and down his nose, but he looks like a normal baby for the first time since his first hours of life.

          Saturday, November 27, 2010 

May’s pretty worked up. This morning Xander wasn’t really up to par. He is supposed to keep his oxygenation up between 85% and 96%, or else the monitoring alarm beeps at the nurse. It's pretty common for an alarm to go off. The NICU is constantly beeping from somewhere. If he’s highly saturated, then the nurse pretty much just turns off the alarm, but if he keeps that up, she might turn down the percent of oxygen he’s on. The air around us is 21% oxygen, and he needs to be able to breathe by himself at that percentage. If he is low, again usually the nurse just turns off the alarm and goes about her business because usually he comes right back up to the appropriate level. But sometimes, if his saturation levels stay in the lower 80s, the nurse will turn up the percentage or do one of dozens of things just to make sure everything is okey-dokey. 

For the past few days, since Tuesday when they took off the CPAP mask, Xander has been on a high flow cannula giving him around 28% oxygen. This is supposed to ween him off of the pressure that the ventilator and the CPAP mask were giving him. The high flow started at level 2 (I don’t know if that’s a percentage or just a level, but it’s much lower than the pressure settings he was on through the CPAP). Thursday, Thanksgiving, they weened that level down to 1.5, and he had been working along great like that. 

But this morning, for whatever reason, his oxygenation levels were fluctuating. Some of the time he was high, 96 or 98 percent, and other times he was low, even into the high seventies. This worries May. Everything worries May, to be true, but this came after yesterday’s drop in his heart rate.

Yesterday May was holding Xander after his feeding time, and she watched his heart rate drop from the normal levels of 145 or so down to under 100. The alarm went off and his heart rate continued to plummet, she said, to about 70. I think this is called brachycardia or bradycardia. May said she patted Xander on the back for a second and he kind of moved a little bit and his heart rate went right back up to normal. The nurse, Susan, said she thought it must have been that his neck was back a little too far as he was resting on May’s chest and perhaps his airway was constricted or something. So it didn’t warrant any more attention than that, but it really worried May.

Last night, May was even more upset by the fact that she decided yesterday for the first time in a week that her throat was not quite scratchy enough to justify her wearing a mask in the NICU. She had been feeling like her sinuses were encroaching upon her face since she was released from the hospital last Wednesday. Her throat felt a little prickly, and she felt for sure that she had caught a cold and would have to stay home from the hospital for days. So she wore a mask the whole time she was with Xander until yesterday. And sure enough, she was holding him to her chest and she felt her nose start to run. Without thinking, she reached up to wipe the snot-boogers away (really, just a little drop of liquid, I’m sure), then went right back to cooing with her little boy, probably touching his face or hands or blanket or something. This memory caught up to her at about 9:30 last night, and she broke down for a little time.

And so this morning, he was not up to par. I think it has more to do with the fact that for the past week, every day brought some new improvement. I, at least, had it in my head that Xander would make these kinds of steps forward every day and we’d be getting him home in days rather than weeks. I know that’s unrealistic, but I hoped, you know? And seeing him just keep to the status quo for a little while, not even taking a step back, is a little disheartening. Kirsten, the nurse, explained that he looked fine, that his numbers were totally normal, but add this to the rest of the last two weeks, to the fact that May hasn’t slept well in months, and she’s worried. Did I mention that May worries a lot?

          Tuesday, December 14, 2010

Xander is four weeks old plus one day, just one day shy of a whole month. 

And he came home today! Booyah.  

If you look closely, you'll see him there in the middle of the car seat.
He doesn't even fit in it any more.

He’s currently in our bedroom sleeping in a small crib/bassonette that folds out like a pack-n-play portable crib. He’s got a low-flow cannula up his nose, giving him 1/16 of a liter of pressure with 100% pure oxygen. Talk about your latest rave oxygen bar. We’ve got a large 3-foot tall tank of oxygen in the hallway between the master bedroom and the nursery with a 25-foot long hose taped to his face. The nurse today told May that he could be on that oxygen just a couple of weeks, or he could be on it for a year. I told May he won’t be on it for a year. She asked how did I know that? I said I just know. Can’t I just know things?

It’s been an exciting day. I left school early to get to the hospital at about 1:30, and the kid was pretty much ready to go. May and I were more than a bit anxious. Filling out a review of his care for the hospital, we marked that he had very good care for everything, but the last question asked how ready we felt about bringing him home. We joked that we should mark the last one, “Not at all.” 

The first of many aerial dives around the house, courtesy of Air Daddy.

Turns out, we did fine. He's a year old this week. Took him to the doctor today. 21 pounds. 28 inches tall. 85 percentile for his head. That all means he's a little short, a little chubby, but with a huge brain. I'll take that any day.