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Alex
The Fathering of a Preemie
By Jeff Stimpson Chicago Review Press Incorporated
Copyright © 2004 Jeff Stimpson
All rights reserved.
ISBN: 978-1-61373-466-7
CHAPTER 1
JUNE TO OCTOBER, 1998
Somebody yells "Boy!" Everything I used to want turns to mist when someone sails past with a baseball. Later I learn it's his head. I think it's gray. I peek on tiptoes as a clot of doctors dive onto the "Boy!," and beyond their gowns I glimpse hands and feet the size of a GI Joe's. "So small," I whisper. So small it kicks my chest. They slide him into a clear plastic box, and wheel him away.
Our road to parenthood had already been twisty. My wife Jill and I were living in Baltimore in early 1997, trying to conceive a baby. When that didn't work, we headed to doctors, who gave us appointments, exams, and odd things to do in cups until one evening in December we heard the nurse on the phone say, "Jill, your test is ... positive!" So we quit our jobs at suburban Maryland newspapers and wheeled it back to the New York City, where Jill is from. In the months since, we'd been pinballing from sonogram to sonogram to let doctors probe Jill as if hunting for a submarine. They said the baby was small, small, small.
They can tell a fair amount about a fetus just by looking at the sonogram: what it sort of looks like; how big it is; if it's moving the right way; if it's making the pre-breathing movements. Alex seemed okay for most of those things, but he was way behind in growth, which we discovered when Jill went in for a routine sonogram at around twenty weeks and was told that Alex was roughly a seventeen-week size.
Around this time, one of the doctors had begun to sigh a lot, and started to use the word "miracle" in a bad way, and not long after that four new letters landed in our lives: IUGR, or intrauterine growth retardation. Alex didn't just arrive prematurely: They chose to deliver him early, thinking that he would do better outside the womb than inside. Jill had also been given steroid shots to "develop" his lungs for this early delivery — though, in the time since, research has shown that steroids don't help in these cases.
The doctors were dating growth from before conception, which made no sense to me. But as our submarine dropped further down a percentile chart of fetal growth, the doctors began wondering when intensive care might be best. "Let's just hope you make it to twenty-eight weeks," the doctor sighed. Then "twenty-nine weeks." Then "thirty ..." As the numbers climbed, the doctor's hands waved and waved in wider and wider circles, and she felt compelled to add that she'd be praying for us. They continued to monitor the fetus with, eventually, daily and detailed sonograms, measuring it and looking for specific signs of movement and particular behaviors, such as joints flexing, and pre-breathing movements — entering Alex in the first critical race of his life: develop, or come out.
Jill went on bed rest, sentenced to rented movies and my cooking. She rose only for sonogram appointments, which jumped from once a week to twice a week to once a day, which pretty much killed time until she was ordered into the hospital after a technician seemed at sea one day during a biophysical (the detailed sonogram), and the doctor didn't see the signs from the fetus she wanted to see immediately. In the years ahead, Jill would say that if she had it to do over again, she'd insist that the doctor wait half an hour, let her eat something, and try it all again. But a pregnant woman is rarely in a position to fight off panic and battle a doctor.
So we came to that Sunday, when Jill gave me the news and I said, "Okay." "I just hope the kid isn't too shocked," she added, looking out the window, her hand on her belly where the kicks continued.
Premature labor affects a fifth of pregnancies in the U.S., and annually some 400,000 premature infants — "preemies" — are born in the country before the thirty-seventh week of pregnancy. The trickiness of predicting the outcomes for such fetuses has been documented. My family was looking at two and a half months early.
Tick tick tick went the heart monitor in the OR as I tied on my papery surgical mask and wondered how life was about to change. Wondered how I was going to screw up this kid. Wondered if I'd get the chance to screw him up. There was nothing to do but stroke Jill's head, listen to the surgeons' chatter and remember the comforting words of "The Neonatal Intensive Care Unit Parent Information Booklet," a hospital handout that begins with the observation, "We know this can be a very stressful time."
The Neonatal Intensive Care Unit, or NICU ("nick-YOU") looks like a baby hatchery: it has a clean, gluey smell and is crammed with carts and medical gear and clear plastic boxes called isolettes. Inside the isolettes, most of the arms and legs don't move; their owners seem pretty tired. Cries are muffled — one infant sounds like a crow — but red and green numbers on monitors constantly set off alarms, bleeps and bells that shatter any sense of a homey nursery. Jill has told me preemies can hear, and some parents fill a few cassettes with recordings of the NICU to play for their baby when it comes home.
In a premature infant, the lungs, digestive and circulatory systems are undeveloped. Preemies' most common health problems affect breathing, heart, brain, body heat and eyes — the latter problem may result in permanent blindness (Steve Wonder was a preemie). Premature babies are at increased risk for apnea, in which breathing temporarily stops for twenty seconds or more. Maybe a lot more.
Someone has stuck a piece of white tape across the front of my son's isolette and written "Hi! I'm Alexander!" No other baby has a piece of tape. Tubes run into Alex's isolette. Blue tubes, green tubes, clear tubes, fat tubes, fine tubes. One carries in warm, humid air; another runs into his pinhole left nostril, and a wider clear tube goes down his throat. He opens his mouth wide, but no sound comes out because the clear tube is between his vocal cords. My kid is painstakingly crafted with miniature versions of my feet and with knuckles the size of these letters. My finger is monstrous in his hand. His eyes are closed, wrinkles rippling across his forehead just as they did on the forehead of my father, who also had thin hair. Alex has my nose. I open the porthole of the isolette and peer in. I look at his palm; his lifeline is long.
"He is one tough little kid," his doctor tells me, then reiterates all that may yet go wrong. As recently as the 1980s, doctors were brutal with the parents of preemies, standing over isolettes and spewing predictions of everything from a quick death in infancy to a bad social life in grade school. Don't touch them, they'd say, don't bug them; their nervous systems aren't formed, and the case is kind of hopeless anyway. These days the medical profession has wised up a little — some nurses encourage holding, for instance — but nobody will predict anything more than a day, sometimes an hour, ahead.
"Some babies fall apart within six weeks," the doctor says. "Some take right off. Your experience will probably be somewhere in between."
I've never been a parent, but I already make a prediction of my own: a years' worth of worry, helplessness, highs, lows, daydreams and dread will be crammed into the next eight weeks until — at the soonest — Alex can come home.
"I'm optimistic," the doctor says.
Optimism floats us through the first week. Jill and I get plastic hospital ID bracelets, hers with "Mother" and mine with "Father" and both with the number "64092." My life becomes a pattern of days spent at work, then meeting Jill at the hospital over Alex's isolette. We cradle his head and touch his palms, watch him squint and learn to yawn. I write a letter to Alex, pregnant with feeling and significance. "You are part of that river of humanity that has had billions and billions of bright sparkles upon its surface. You're one of those sparkles now," I write to him.
Meanwhile Jill hooks herself to a pump to begin trying to lactate. But the stuff comes hard, and soon she hates opening the door of the pumping room fridge and seeing the full beakers of the other mothers; soon she speaks about full-term moms and their "bully" babies in the same tones she once used to describe other drivers on the Beltway.
Each night at nine o'clock that first week I leave Jill, who's still recovering in the hospital, and head home, arriving at about ten o'clock, and spend two hours juggling phone calls. Amazing how a 21-ounce person has started phones ringing from Tucson, Arizona, to Waterville, Maine. "Awful big name for such a little baby," my sister says. "Little guy, isn't he?" my brother says. The phone rings and rings until I get about four or five hours' sleep a night, and begin to feel like a parent.
Alex doesn't call, because he's busy. When the big ventilator gets to be too much, they attach a device that makes his chest flutter. They wiggle a tiny stocking cap on his head to preserve body heat. The dial controlling the percentage of pure oxygen in his air tube goes up to 70, down to 25, and gradually settles around 30 to get him used to breathing air (which is about 21 percent oxygen). I look at Alex and I know that he doesn't know what he's doing here. He doesn't know what a "transfusion" is when he needs one on Tuesday night. He doesn't know what "jaundice" is when it sets in, when they haul out banks of purple lights and bake him while he lounges like a preemie movie star in a pair of tiny black eye shades. His right fist finds his mouth. We learn he may qualify for Social Security. Around that time, a grandma new to the NICU walks past Alex's isolette and looks at him as she would a car wreck. We tell Alex he's just met his first jerk.
This is how the first days go, before Alex turns one week old on Father's Day. To celebrate, Jill's mom sticks her head near the isolette port and breaks into "99 Bottles of Beer in the Wall." Jill and I squabble about who gets to change his diaper, which is about the size of a pack of playing cards; it's the smallest size they make, and it's too large on him. This is how the first days go, while our world goes up and down, mostly up: good heart, cloudy lungs; firm kick, yellow color. He pinks up, twitches in a way that lets me glimpse the baby that my child will become.
This is a very stressful time. Day to day I try not to stare at the babies and little boys on the street — hordes of them, a mob, a terrifying many because all, all are bigger than Alex. Time after time my stomach will not stop catching when I enter that bright room ("Hi! I'm Alexander!") and go once more into the bleeps, praying that no bell tolls for him. Praying, as I look down at my boy through the clear plastic and realize that I am the one who feels so small.
Alex turns a month old without ever leaving the hospital. I learn to call him a "preemie," a cute new word in my life that has let in menacing associates: "BPD," "desat," "brady" (bradycardia, when the heart rate falls below 100), and others that on every visit cause Jill and me to keep one eye on Alex and one on his loud, pitiless monitors.
An Irish nurse calls him "the wee man." But he's seven ounces bigger than when he was born, and so far this week he's gained about twenty grams a night. I think a penny weighs about twenty grams. Sometimes we take him out of the box and hold him for a half hour, hoping that ounces will never be this important to him again. Or to us.
Doctors tell us that parenting a preemie is a roller coaster. Jill says it's more like pinball played badly. Both similes hold up during a typical weekend with a preemie: Friday afternoon the head doctor greenlights our holding Alex skin-to-skin, and gives his overall assessment of Alex as "pretty good." But when's the kid going to grow?
Not this Friday, which is a bad day. The doctors give Alex a spinal tap, then have to move his isolette once or twice. That evening the bells go off, as Alex starts "desatting," meaning the oxygen-saturation in his blood dips below 80 percent (not good — it should be very close to 100 — but this happens to a lot of preemies). The numbers refuse to rise; the doctors wheel in an X-ray machine that must look to Alex about the size of a mobile home. "Don't touch him just yet," they tell us, "and come back in a few minutes." So we stand back like tourists watching a mugging while they turn the lights up and dive on him. Couldn't some of the reading be caused by his squirming? It's amazing what a baby's wires can get into. No, they tell us, no. The doctors never look at his face. Another doctor says Alex needs a diuretic to get fluid from his lungs. Later we're told we can hold him, but after the nurse finishes feeding another baby. Then a hideously young doctor flies by and bombs us with the word "pneumonia." Jill cries all the way home.
Everybody wants to know how he is. Why's he desatting? Why don't they feed him more? What kind of infection? Why don't you find out? Jill and I turn off the phone and open beers. We sit at the table and drink beer and talk about a time when others might actually understand something about our lives and when we'll understand how we can follow the nurses' advice and "take care of ourselves." "The hardest thing about this is telling other people," Jill says. "I wish there was a way to have a conversation with someone and have them just not ask."
On Saturday, Alex is fine. Jill holds him to her chest, and he stares up at her chin with eyes bluish and bright under a tiny wrinkled forehead, and goes to sleep. It's amazing what's possible again. As the poppa, I will announce that Alex has sucked his thumb twice that we know of, and is the only baby in the NICU who doesn't need a constant IV. Jill is filling more and more plastic containers with breast milk, while I watch and sometimes handle the timer. The doctors inject his milk with stuff that has initials.
Jill and I spend a week at her parents', which is close to the hospital, to save the time we spend on the subway hating the word "desat." We take the bus up each evening, and afterwards walk back south the eleven blocks, along the darkened park. We pass the same doormen and the same brooding museums. Ahead of us on the walk, never seeming to get any closer, is the brightly lit "1" of the Empire State Building. We sit on a low wall and weep or work out a strategy for the next time we walk in and alarms are going off.
Alex begins to grow. His eyes move around. A doctor tells us that yes he can see, but his brain can't process the information. The nurse takes him out of the box and I hold him, wishing that the people with the questions could feel his weight and could look down and see his head like a fuzzy ball on their chest. In his box we put a stuffed football rattle, a postage-stamp drawing of a sailing ship, a Tiny Toons Bugs, and a little teddy bear. On one wall of the isolette I tape a headline from the NY Post that reads, "Tough as Nails!"
Then it is another Sunday. "This will just take a few minutes," says the doctor as they turn up the lights and more and more doctors gather over him. He's moved a tube, so they say, and it has to be re-inserted. Jill and I flee into the empty breast-pumping room, then settle at the empty doctors' station and eat their jelly beans. Jill picks up a neo-natal textbook — bad move — and reads that by six weeks many premature babies double their birth weight. Alex hasn't even gained a third of his. The few minutes drag to an hour. More doctors come in. We buttonhole two of them on their way out and learn they are anesthesiologists called in to supervise the insertion of a new tube. Alex lies squirming for almost ninety minutes while a plastic tube is shoved down his throat twice. Jill is ready to shatter when she asks if they can give him a sedative. "We don't do that to babies this size," the doctor says. There is always an answer. This time the answer is that Alex vomits during the tubing, and may have to go on days of antibiotics if he got any of the stuff in his lungs. "We'll know later tonight," a nurse says. The Tiny Toon Bugs has been flattened against the bottom of the box.
Jill cries halfway home. We sit on a bench near the park and she pulls back from the edge of a rant. I have no ranting in me. I just wish my new family felt better. I have a better handle than Jill on getting through this one step at a time, but part of me wishes I could rant. And to the right people. Once Jill and I had things to do this summer. But no plan feels as real as the hospital. When I see my son inside the box I know he doesn't give a dirty diaper for our plans. He's here, he's tough as nails, and somebody's going to pay attention for however long this takes.
People are still asking about Alex by the time he's seven weeks old, and two pounds. He moves around and likes to take a bath in a plastic bowl. Recently he had his first tantrum, during which he resembled his mother. We're near tantrums of our own. Sometimes I understand other parents when I look through the plastic of the isolette and into his eyes, which are the color of the night sky when you're having a good evening. That face through the plastic makes everything else evaporate. At other times I hate clear plastic and I hate other parents and their fat children who grow. So does Jill.
(Continues...)
Excerpted from Alex by Jeff Stimpson. Copyright © 2004 Jeff Stimpson. Excerpted by permission of Chicago Review Press Incorporated.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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