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12/21/2004

OH, MY GOD, et cetera

Paul is so much more low-key than I am. I would have begun his post with, "OH, MY GOD, OUR BABY ALMOST DIED."

Instead I'll begin my post that way. OH, MY GOD, OUR BABY ALMOST DIED.

Yesterday we were awakened early by the ringing phone. It was a physicians' assistant from the NICU, and the call began innocuously. "I just wanted to warn you that we've put Charlie back on CPAP so that you're not alarmed when you come in." But the news got worse from there: they suspected Charlie had an infection.

The overnight team had noticed Charlie was having more desats, periods in which his blood oxygen saturation dipped. His color wasn't good, and he was less active than usual, meaning he didn't squirm or scream when his diaper was changed. They'd taken some blood for a culture and started a course of antibiotics. They'd stopped his feeding until his condition improved.

The doctor called a bit later to repeat what the PA had told us. He planned to remove Charlie's central line, an intravenous catheter placed in a large vein in his arm. Its advantage is that you can leave it in place for a long time, like when a baby is expected to need IV nourishment and medication for a while. Its disadvantage is that it can provide a convenient route for infection to set in. Charlie's line had been placed a few days after he was born. After three weeks, it seemed its sterility had been compromised.

We went to the hospital and sat by Charlie while the antibiotic dripped into his vein. Once again it was hard to see his face between the CPAP tubing and the hat that held it in place. He'd been undressed so that the nurses could keep a closer eye on his color and his breathing. He was splayed on his back, not in the compact midline position he seems to find most comfortable. Except for a slight difference in size, he looked just like he had on the night he was born. Noticing that, I got scared.

We watched as the central line was removed. The catheter was about the diameter of a single piece of thin spaghetti, and it had been threaded deeply into Charlie's tiny arm. The PA pulled it gently and smoothly. It kept coming and coming. And then it was out, and the opening was cleaned and dressed. Charlie's arm was now free of the splint that had protected the line — the first time we'd seen his left forearm in weeks.

He didn't move much as we watched him. His CPAP apparatus bubbled. A blood transfusion was ordered. He slept. I cried.

Around 2, Paul and I left the hospital for a break. On our way out, we ran into the doctor who'd called us earlier. All I remember about what he said was this: "This is really tough...but he'll go home with you."  And that was the first time the seriousness of the situation sank in. It finally occurred to me: Wait, you mean there's a chance he won't?

Yes.  But instead of drafting chapter 1 in OH, MY GOD, OUR BABY ALMOST DIED for Dummies, I will simply revise and reiterate yesterday's vow: I will not Google "bacteremia preterm neonate."  I will not Google "bacteremia preterm neonate."  And don't you do it, either.

When we got back to the hospital later, we were told he was doing better. He was having his vital signs taken again, the blood pressure cuff fastened around his upper arm, the little Brookstone vibrator moved around his chest to loosen any mucus in his lungs. And he was angry. He screamed and screamed, more vigorously than I'd ever heard. I was initially pleased, thinking this meant he was feeling well, mustering enough energy to yell.

And then he simply stopped breathing. After a moment of yelling, he'd be so worked up he didn't draw a breath. The nurse rubbed his feet and he started again. Then he'd yell. Then he'd stop breathing. She'd rub, he'd breathe. Spells of apnea aren't unusual in premature babies; in fact, they're often normal, since the parts of the brain that regulate breathing can still be immature. But when the apnea sets in only after a baby has gotten sick, it's troubling. And when it's not a single isolated event every few hours but a string of apneas one right after another, it's especially troubling.

The nurse went to call the doctor. Paul and I watched Charlie's chest rise and fall. When it didn't, we rubbed his feet, wiggled his fingers, tickled the soft skin on his belly — all the things you don't normally do to a premature baby for fear of overstimulating him.

We stimulated the hell out of that baby.   We rubbed, he gasped. I cried and swabbed my nose with rough hospital paper towels, then raced over to scrub my hands before touching him again.

After a couple of hours, with a course of caffeine percolating into his new IV, he started to breathe more reliably. It was a good time to do the spinal tap the doctor had ordered to rule out meningitis. Paul and I waited outside while it was done, then anxiously sprinted back to Charlie's isolette to make sure he was still breathing.

Not only was he breathing, he was sleeping comfortably, lying on the side he prefers, tucked snugly in a soft white blanket. We watched him sleep for half an hour longer, then dragged ourselves home (ha, "home") to wait for the preliminary results from the spinal tap.

The news was good. His white cell counts weren't elevated. The culture results wouldn't come in until morning, but by then we'd know what the pathogen was, anyway — a normal white cell count was all we needed to see to rule out meningitis. We ate a late supper and a lot of cookies and slumped into a grateful, exhausted sleep.

This morning as soon as I woke up I called the hospital to see how Charlie was doing. The nurse said he was much better, and told me they were going to restart his feeding. I told her we'd be there for it.

When we got to his isolette, the nurse handed me Charlie's first bottle ever. No hat, no cannula, no syringe screwed to the end of his feeding tube. Just the baby, a blanket, and a bottle, which he sucked back eagerly. Then he immediately fell asleep, breathing comfortably and regularly on my lap for the next hour and a half, Gram-negative rods be damned.

On our way out, we saw the doctor again, who looked grave and said, "You know, yesterday he looked really bad. We were pretty concerned..."

I held up my hand to stop him and said, "I can't listen to that right now." I can't hear how bad it was until the danger has completely passed. I am still too aware that OH, MY GOD, OUR BABY ALMOST DIED to have that notion confirmed.

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