Out of the Woods but Not Yet Home

Out of the Woods but Not Yet Home

Out of the Woods but Not Yet Home

A weeklong electronic journal.
Jan. 13 2003 5:25 PM

Out of the Woods but Not Yet Home

Percy's gone from under 2 pounds to 6 and a half, but she still stops breathing a few times a day.

Click here to read Zac Unger's "Diary" about his daughter Percy's birth.

Percy and her mom
Percy and her mom
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Things in the Neonatal Intensive Care Unit are starting to get boring. Our daughter was born 92 days ago, and except for a brief ambulance ride from one hospital to another, she's never been outside. In the beginning, when she was an impossibly small premature baby, it was all drama, excitement, that odd, unpleasant exhilaration that comes from being a combatant in the medical trenches. Now I've got that same glassy-eyed, thousand-yard stare I saw on the veteran NICU parents when we first got here. I want so much to take Percy home, to start figuring out how to live a normal life with our baby. But we can only take things as fast as she'll let us. Percy's not particularly sick anymore, but she's surely not well. She still stops breathing three or four times a day, which is an improvement over what she used to do, but not quite good enough yet for a doctor to write a discharge order. For us it's been three months of hospital food and sleeping in chairs, three months of watching every single move she makes for signs of illness, three months of living in suspended animation.

I have to remind myself just how far she's come. Since I see her every day, it's hard to get any perspective on the gains she's made. When she was born, she weighed only 1 pound, 15 ounces; now she's up to almost 6 and a half pounds. She's out of an incubator and into an open crib. We can hold her as much as we want and play with her like a regular newborn. The IV's are gone, and the only drugs she still takes are multivitamins. In fact, she doesn't have a single tube in her, just a few sticky pads on her chest to monitor her breathing and heart rate.

It's hard not to make comparisons with the other babies, though. Most babies born at 27 weeks like Percy get to go home at around 36 weeks post-conceptual age. We're already up to 41 and still counting. The doctors say she may be ready to go home in a week or two, but they've been saying that since early December, and I try not to pin my hopes on any particular date. In truth, we've been lucky. There's been no brain bleeding, no intestinal hemorrhaging, no blindness. Little Alejandro in the next room has been here for nine months already; his lungs are still in bad shape, and his mom says she has no idea when she'll be able to take him home. The nurses ride him around the ward in a stroller with a portable oxygen tank, and sometimes I peek into his room and see him sitting in his swing chair, looking out the window and babbling softly to himself.

Percy with her monkey
Percy with her monkey

From the very beginning, all the nurses have been using the word "roller-coaster" like a mantra, and we've certainly gotten the full E-ticket ride. Last week the head of the pediatric cardiology department from a hospital across town came in for a consult. Just the fact that he was showing up at 10 pm on a Friday felt like a bad omen. And he didn't exactly put me at ease when the first thing he said after introducing himself was, "So, has anybody in your family ever died unexpectedly at a very young age?" He told us that Percy was showing signs of a poorly understood cardiac anomaly that causes otherwise healthy young people to suddenly drop dead in their teens. We spent a week trying to figure out how we were going to deal with this new horror, until the doctor determined that the arrhythmia was actually a rare and temporary side-effect of a medicine that Percy was taking. Just kidding—no congenital heart defect after all.

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In the middle of that awful week, we got an unassuming little half-page letter from the hospital about payment for our first 40 days of treatment. One line in the upper right-hand corner said simply, "Balance Due: 944,748.32." At almost a million bucks a month, couldn't they at least have rounded it down to the nearest whole dollar? Fortunately for us, the hospital headquarters had recently been raided by the Justice Department because of an overbilling fraud. After the CEO resigned in shame, the hospital wasn't in a very strong bargaining position, so when my insurance company said they would pay $75,000, the hospital took what it could get and gave up on collecting the massive difference. Still, $75,000 and counting is a lot of money, and we get weekly calls from the insurance company asking us when Percy will be ready, prodding us to get her home soon. I always tell them that she won't be ready to go home for at least six months. That way, if we get her home in one, they'll feel like they got a good deal out of us.

Originally the doctors said that the apnea—the spells of not breathing—would go away by the time Percy reached 35 weeks. When she hit that point and was still forgetting to breathe, they said to look forward to her due date for relief. When that day passed, they said some preemies need another 12 weeks. I don't even want to know what they'll say when we get there. It's amazing how blasé I've become about my daughter not breathing. When the alarm goes off, I turn down the page corner of my book, rub her back until she sputters out a few breaths, and, when the monitor indicates that her oxygen saturation is back to normal, I settle back into my chair.

Percy with hand in pocket
Percy with hand in pocket

We can't stay here at the hospital forever, so they've started talking about sending her home hooked to an apnea monitor, a VCR-sized box that will let us know when she's not breathing. I can't decide how I feel about that. On the one hand, it will provide incredible peace of mind; I won't have to stay up all night staring at her. One friend suggested that we could train a Chihuahua to lick her face every time the alarm goes off so we can really get some sleep. But on the other hand, going home with a monitor feels like a defeat. I wanted a triumphant jailbreak, not a tentative furlough. It's as if the doctors are admitting that they don't know what's wrong with our daughter, they can't fix it, and we're probably better off going home and trying to puzzle it out ourselves. The thought of being solely responsible for our baby without round-the-clock nursing is a little terrifying, but pretty soon we'll have to strike out on our own. Yesterday the doctor joked, "Sometimes I let the baby go home, but I have to keep the parents here for observation."

Fortunately we've already had three months to get to know our baby, and we've had the best teaching possible from the nurses. We already know what Percy's feeding schedule is; we know the best way to rock her to sleep; we know that she likes her tie-dyed hat the best and that for a few hours before midnight she's always wide-eyed and alert, ready to play. She seems more worldly than your average newborn, like she's earned some street smarts during the last three months when she should have been wrapped up in the womb. I love the way she looks after she's just eaten: eyes rolled back in her head like a satisfied drunk, milk running down her chin, and her chubby cheeks working out a few furious hiccups. Soon the NICU will just be a good story about something that happened in the distant past. We'll take her home and start from scratch. Finally, after everything, our very own tiny baby.