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A Mother's Journal: Recollections of the Birth and Development of a Premature Baby

by Nancy King Bernstein

Introduction

"Tiniest Babies Show Success as Youths in Spite of Hurdles" reads a headline in the New York Times about new research. Each year 40,000 babies in the United States born weighing less than 1,500 grams or about 3 pounds 4 ounces, are considered very-low birth-weight infants. A study conducted at Rainbow Babies and Children's Hospital in Cleveland was the first to track the most at-risk premature infants into adulthood. They found that, despite frequent physical and learning disabilities that often prevent them from attending college, these "preemies" are nearly as likely to complete high school as children of normal birth weight, and less likely to engage in risky behaviors.

Statistics tell us about groups of people; personal stories tell us about individuals. Following is a mother's account of giving birth to a premature baby who weighed 660 grams and the experience of raising a child who beat the odds.

23 weeks and counting:

I am lying flat on my back. The hospital bed is tilted so that my feet are higher than my head. The nurses are particularly interested in the 23-week-old fetus inside me who is trying very hard to get out; they hope gravity will help keep him where he is for a few more days, at least until the steroids given to help mature his lungs have a chance to work. An IV drips magnesium sulfate into my veins to prevent my uterus from contracting.

We have had no warning: I bled during my first trimester; a sonogram showed a low placenta, which would probably move up. It did. I had an uneventful second trimester, feeling better throughout than I had during my first pregnancy 6½ years earlier. But a couple of days before the end of the second trimester I began bleeding again. A couple of sonograms a week apart revealed nothing unusual, but given all the blood it was suggested I keep my feet up over the weekend. Sometime in the middle of the night on Monday I realized that the lower abdominal discomfort I was feeling had a rhythm. I was in labor. At 23 weeks. When I went to see my OB the next day, he discovered bulging membranes; by the time I was checked after being admitted to the hospital, a tiny foot was hanging through my cervix.

So I lie there. I am, as one person put it, "out of charge," -- the opposite of "in charge" -- and I know it. I have no control here. I know the facts, which are too scary to dwell on: 24 weeks is the cusp of viability for a baby, and we are not quite there yet. The neonatologist who talks with us tells us that they think Matthew is probably around 700 grams or more, which is a good size and will help him. He says that the longer the baby stays inside -- every hour -- counts. He tells us quite a bit more that I can't focus on or absorb. All I can do is cooperate with the medical efforts to keep me pregnant for as long as possible. I can't bear to think about the quality of this child's life if he lives. I can't torture myself about why this has happened. What I have is life -- mine and the baby's -- which depend right now on my lying upside down in a hospital bed having contractions.

Matthew, weighing 660 grams, is born

This is more or less how it goes from Tuesday to Friday, with occasional alarms followed by racing around when the medical experts either think the baby is about to be born or can't find his heartbeat because of his small size and low placement. Visitors come; our cell phones ring; the windowsill fills up with flowers. My husband Bob sends out updates; answers pour in. At about 3:30 on Friday afternoon, Matthew is born: all not-quite-pound-and-a-half of him, breathing mostly on his own.

At some point a little later that evening, I unwillingly allow myself to be wheeled down the hall to the brand new neonatal unit. Matthew is lying on a shallow tray, under what looks like saran wrap, with a huge tube in his nose and a host of other attachments I can no longer even remember. There is a spanking new color monitor overhead making it easy for the nurses to monitor his vital signs: blood oxygen level, heart rate, number of breaths per minute. I am still in shock; I can't really feel anything, but I can literally see through this tiny transparent child and am only aware that I am crying and that I want to leave this room and not come back. Bob tells me later that the nurse took my hand and placed it on Matthew's leg, at which point my own legs gave out from under me. I remember none of this, only of thinking: How can this tiny see-through creature possibly survive?

Somehow I follow through on my plans to nurse, attaching myself to an electric pump for the first of probably thousands of times to follow over the next six or seven months. The milk produced by the mother of a preemie is different from that produced by the mother of a full-term infant: it has more of everything they need to grow and develop. I dutifully go down the hall to visit Matthew, but it is not where I want to be. I don't remember much of what the nurses and doctors say to me in those early days; most of me isn't functioning. Bob tells me the doctor has said Matthew is a fighter, and that's good: he will need to be.

Going home without Matthew

The first few days home aren't much better. I manage to pump and sleep and pump and sleep and at some point I come into the city for a postpartum checkup and a visit to the baby, but I am overwhelmed: every simple task, every phone call, brings tears and sends me back to bed. I focus most of my available energy on my six-year-old Daniel, who has been through hell this past week with Mommy and Daddy both away for reasons that are completely beyond him. What I am really doing, I realize later, is trying to insulate myself against loving this baby, because I cannot believe he will live.

Bob's reaction is different. He is on every website, reading every article, asking all manner of questions of the medical staff at the hospital -- questions I can't even follow in my state. He encourages me to read this book and that article and visit these fourteen websites, but I demur. I will get there, I tell him, but not yet.

At the hospital, the senior neonatal nurse is assigned to Matthew over his first weekend (she spends the early days with most new babies who arrive in Intensive Care, I learn over the months that follow), and tells us what we most need to know: how to comfort the baby (firm gentle touch, rather than light stroking), and the broad outlines of what to expect -- including, she warns us, nasty infections, because a hospital is a terrible place to be with such an immature immune system. Once he's strong enough to go home he will be safe from these, but since we're nowhere near there yet, she warns us to expect probably five (Matthew will have four before we leave, all of them scary and one positively terrifying).

We are also warned about brain bleeds, which strike most preemies, especially micropreemies like Matthew, in the first week of life. Depending on their seriousness, they can lead to various degrees of complication down the road, including developmental problems. Somehow, miraculously, Matthew escapes this one; he seems never to have suffered even one of the mildest-grade brain bleeds.

He does have jaundice, for which he is treated under the lights with shades over his eyes. He lies there on his back with his hands up, looking for all the world as though he were on the beach and would like someone to please bring him a cocktail; except that he still weighs less than two pounds. He is in an incubator by now, and we can reach in and cup our hands over his tiny head and rear end, which a nurse tells us will help him feel comforted. There is still a ventilator and feeding tube; at some point, they begin to stimulate his digestive tract with the milk I have pumped, dripping in the milk through the tube.

Days go by. I go back to work after a week or two. I stop at the hospital to pump and see Matthew in the morning before going to the office, then again at lunchtime, and once more before heading home. I watch alarms go off around the room as various babies' blood oxygen levels go below acceptable levels, or their heart rate slows or speeds too much, or they stop breathing for an instant (apnea). I watch their parents struggle with unknown pieces of bad news; I watch parents hold their babies. No one volunteers to let me hold Matthew for quite some time, and I do not ask: he is so small, and while I am craving contact with him I am also afraid of it. The nurses assure me that he will do all right. He's a fighter, they tell me repeatedly -- and while they know he needs that fire to help him survive, they also wish he would chill out and lie still and quit trying to pull all his tubes out and stop working so hard, and use all those calories he's squandering to gain weight. Slowly I begin to believe that he will live, and relax my guard against more pain. The days all run together, in that strange unnatural hospital light, with this tiny beautiful boy at the center of all our hopes and thoughts, while we try to go on with living as usual: our jobs, everything our six-year-old needs, all the rest of everydayness. I worry that I am not doing enough, as I see mothers who spend all day long in the NICU (Neonatal Intensive Care Unit). But I want to take time off when Matthew comes home, so I keep working for now.

Progress is slow, but not always sure

There are a hundred critical points to get past safely having to do with all of Matthew's underdeveloped systems. He must get off the ventilator as soon as possible because it will do grave damage to his lungs the longer he is attached to it -- but he has to have enough oxygen, and he can't breathe that in for himself at first. Until he can, one of the neonatologists explains, the doctors choose to risk his lungs rather than his brain, which needs that oxygen now to develop properly. His lungs will get so much larger later that damage should be less serious in the long run, whereas brain damage can't be reversed.

He is on the ventilator for several weeks before he graduates to CPAP, short for Continuous Positive Airway Pressure, which he hates hates hates, and keeps trying to pull out. After a couple of weeks of that comes a little nose cannula. As he grows stronger, they take him off the cannula for longer and longer stretches; when he no longer needs it, he will be moved out of the NICU and into Intermediate Care. But the morning after he's finally breathing fully on his own, at maybe a month and a half old, we get a call at 6 am: Matthew is not well; they suspect infection, they want to do some testing for which they need our consent, and they're going to have to re-ventilate him. We find a friend to take Daniel for the day and rush in, and are crushed by what we see. This baby, who has been animated and comfortable and content the evening before, free of so much of the apparatus that had been driving him crazy, is gray-green in color, completely unresponsive, and clearly breathing only because of the ventilator which is doing it for him; his chest moves up and down in time with the machine -- worse than it ever was when he was ventilated in the first place, when he was doing at least some of the work himself. The staff is shocked and quiet and sympathetic, and I am disbelieving, terrified. I had let myself believe that he would live, I had let myself love him, and now it looks as if he may not make it after all and I don't think I can stand it.

He is given broad-spectrum antibiotics; a lot of time is spent looking for a good vein. It is torture to watch them poke and prod; they finally find one on his head, giving him a really bad haircut in the process. When they are finally done and put him back down to rest, I ask if I can hold his hand. A nurse warns me not to expect a response. But when I put my index finger into his tiny hand, he grips it for all he's worth. He is much better by the next day.

We learn about the nurses, most of whom are wonderful: warm, full of energy and information and reassurance and much-needed humor. We learn about those few that drive us crazy, and share intelligence with the other parents. Our endless hours in the pumping room make for some close friendships after a couple of months with our babies at the hospital.

I experience my first serious "brady" -- short for bradycardia, or too-slow heartbeat. I am watching Matthew's monitor when suddenly the heartbeat number plummets from well over 100 down into the 80s. I try to call for help but nothing comes out: this, however, is why they have monitors. A bell has begun to sound, and a nurse is there in no time, calm and quick, massaging him a little until the number comes back up. It has probably not even taken a minute, but it's felt like an eternity. My own heartbeat is elevated for quite some time.

Most of us parents try to be there at feeding times, so that we can participate -- even, in the early phases, when that means holding our babies in one arm and a vial of breast milk attached to their feeding tubes with the other hand. We change their diapers and take their temperatures once we are allowed to. We are allowed to practice kangaroo care, so I take to wearing huge shirts that I can re-button over both of us; and with Matthew's bare skin next to mine, we sit for as long as they will let us, watching the activity in the NICU going on around us but quiet and warm and still, just the two of us. The monitors show he loves this: all his numbers stabilize while he is next to me this way, and he sleeps.

Out of the NICU - Into a bassinet

Matthew is moved into intermediate care one weekend at the end of November. A week or so after that he is removed from his incubator and placed in a plastic bassinet. I have finally gone out baby-clothes shopping, since without the incubator we have to pile on the layers to help his tiny body maintain temperature. Until I was told he could actually use some clothes, I was too superstitious to shop for him, and I cry as I walk around the local baby store in my neighborhood and the Baby Gap near the hospital.

The most satisfying moment comes on the day I lift him out of his crib for the first time without needing anyone to extricate him from any wires or tubes, or to take him out of the incubator for me. It is just the simple parental movement of going to Matthew, picking him up, and bringing him to my shoulder for a hello hug -- the simplest, most wonderful thing, which I have waited more than two months to do. I am beside myself I am so happy.

Matthew also starts "nippling," or actually drinking from a tiny vial. He is not very good at this: a lot of it comes back up (reflux) and he bradys often. The way he is improving by the second week of December, they tell me they think he'll be home by Christmas; but all the reflux and whatever else is going on causes his weight to hit a plateau somewhere in early December, so he's not at the magic number (1100 grams, or about 4 lb. 11 oz) in time (he makes it three days before the new year, on December 29th).

Going home with Matthew

At our exit interview, we are read the riot act about protecting Matthew from germs. We are to be ruthless about keeping him away from other kids and public places. We are not to let anyone in our house with even a cold, and we are to make everyone who comes in the front door wash hands immediately. We are to be vigilant about this for a year and a half, but especially during the winter -- which is when, of course, we are taking him home. We are to keep him away from smoke and dust, and not to be surprised if he turns out to have allergies and/or asthma. I can't remember what else they tell us, but I plan on a quiet maternity leave, mostly at home, while cold & flu season rages around us. Matthew gets his first dose of synagis in the hospital, to protect against RSV (which sends a lot of full-term babies to hospitals during the winter). He will get a monthly shot during his first two winters.

The day we bring Matthew home, we take a picture of him on his brother's lap. This is pretty cool: Daniel has seen him only once before, being held by a nurse, through the glass of the neonatal unit. Then, several hours later, Daniel comes down with the flu -- high fever, the works. And what have we done our first day out? We have put Matthew in his lap. The next few days are a nightmare, as I can't go from one child to the other without disinfecting myself first. Poor Daniel, who is very sick and quite miserable. Bob comes down with it next, and takes to wearing a surgical mask on those occasions where he has to hold the baby while I tend to Daniel. Somehow, Matthew and I escape this round.

I have birth announcements printed. They announce Matthew, born September 25, 1998, weight: 1 pound, 7 ounces; Came home: December 29, 1998, 4 pounds, 11 ounces.

The next steps

I go back to work at the beginning of April. Matthew seems to be doing beautifully: he is a happy and sweet baby, and I am thrilled. Luckily, we have agreed to participate in Lenox Hill's follow-up program, because I see nothing wrong with Matthew -- but at our visit in May, they do. He is not moving well, he is stiff; haven't I noticed? I have not, not even a little. They point me to a physical therapist in Westchester, and we begin physical therapy immediately, along with the process of being admitted to Westchester's Early Intervention program. If it hadn't been for the Follow-Up program, we would not have known he needed the help.

Early Intervention arranges for a battery of evaluations over the summer: special education, physical therapy, occupational therapy, speech. By this time, Matthew has become a mover. He has been in physical therapy for a couple of months, and has learned to sit, crawl (speed crawl -- with his rear end moving a mile a minute) and pull up all at more or less the same time. He is not talking at all, but the special ed evaluator notices that he doesn't miss much: he loves the toys and pictures she offers him and watches everything intently. Occupational and Speech Therapy are added to Matthew's weekly regimen of therapies, and we add some wonderful people to our lives in the persons of his new therapists. For about 18 months, Matthew will have physical therapy twice a week, occupational therapy twice a week and speech twice a week. It will be next summer before Matthew shows any real inclination to learn to speak, and then he will do it the way he learned to move the previous summer -- all at once. When we go on vacation in August, about a month before his second birthday, I keep a list of of the new words he learns at the beach -- not just words he repeats after we say them, but words he uses on his own. There are more than 100 after two weeks.

At some point shortly after his first birthday, when Matthew seemed to be making significant strides towards catching up with his chronological age, it occurred to me that he might be ready for school the following fall, so I signed him up. It's a good thing, because he is very ready by the time he turns two. He is discharged from physical therapy in September. Our speech therapist lets him go just before the winter holidays. Our occupational therapist thinks at that point it will be maybe another six months until she is through with him, but in fact she thinks he's ready by February. Last summer he went to day camp five days a week, and almost learned to swim.

Matthew as a toddler

Matthew just turned three on September 25. He' s still small -- in about the 5th percentile in both weight and height for his chronological age. (But his brother, who was born full term, was small, too.) He goes to school every day and loves it. He is a friendly, happy, mischievous kid, who adores music and gymnastics and his big brother and just ab out everything else in his life. Joyful Boyful, we took to calling him at some point along the way. He hasn't been sick much -- despite my worry early on. Colds have always been colds, nothing more.

For other mothers of "preemies"

What do I want to tell you? Two things. One: however you feel when your preemie is born is okay. However you need to deal with your emotions and your experience is okay. Don't compare what you feel and need to do to what your partner feels and needs to do or to what any other parents in the NICU feel they need to do. Do what you feel you need to do, for yourself and for your family.

Two: make sure your baby gets appropriate follow-up care once you are all home. Our physical therapist is convinced that Matthew had not only physical problems, but neurological problems contributing to them when she first began working with him. She thinks he might have had "CP hemi" -- or cerebral palsy affecting half his body -- had we not gotten him into physical therapy when we did, but that brains that young can actually rewire themselves somehow with appropriate therapy. The earlier a baby can get help, the better. We've been extraordinarily lucky and not every outcome will be so good, but have your baby checked early and often.

About the Author

Nancy King Bernstein is a freelance writer and editor, and is co-founder and editor-in-chief of Inward Springs, a periodical for liberal religious families.