A parents’ survival guide for when a preemie needs intensive care.
When my husband and I walked out of the maternity ward after our daughter was born, we didn’t look like new parents. Other couples carefully carried swaddled bundles to their cars and nervously strapped them into their safety seats, while we held only our overnight bags—and a breast pump. My perfect pregnancy had ended five weeks early, and our 2-day-old daughter was in a neonatal intensive-care unit (NICU). She was breathing through a tube, surrounded by other premature or sick newborns and the beeps of the highly calibrated machines that kept them all alive. It would be three weeks before we’d be able to bring little Abigail home from the hospital.
We were completely unprepared for the weeks that followed her birth: getting used to the sight of her tiny body hooked up to IV lines; watching nurses weigh each soiled diaper; finding terms like “oxygen sats” (the saturation level of oxygen in the blood) and “RDS” (respiratory-distress syndrome) lodged in our conversation; scrubbing our hands and forearms for a full three minutes, five or so times a day, before being allowed to touch our new baby.
Today Abigail is perfectly happy and healthy, and though the traumas of the NICU are long behind her, we, her parents, still remember them well. And we’re not alone: Each year, nearly 13 percent of newborns in the U.S.—some half a million babies—are premature (born at less than 37 weeks), and most will spend some time in an NICU due to complications. The numbers of preterm births are rising, up 36 percent since the early 1980s. Fortunately, with advances in neonatal care and technology, the chances that these babies will survive and thrive are rising too. While some parents are warned that premature birth and a NICU stay is a possibility due to multiple births or a pregnancy condition, many don’t know what’s ahead until they’re in the delivery room. In either case, it’s impossible to really prepare for what’s behind the doors of an NICU—except to know that, as trying as it may be, miracles happen there every day.
In the beginning, one of the most difficult tasks for parents is redefining what’s normal, says Mara Tesler Stein, a Chicago clinical psychologist, whose premature twin girls spent the first eight and a half weeks of their lives in an NICU. “When you give birth to a premature baby, you’re dealing with a tiny infant who’s fighting for her life,” she says.
And though you may feel you’re facing this trial alone, you’re not. Here, veterans of NICUs, both parents and medical experts, share their advice and experiences.
Learn About Risks For Preterm Labor
While I was in early labor, walking the halls of the hospital, my husband and I strolled right past the NICU but paused to watch the newborns in the well-baby nursery, even though I was only 35 weeks pregnant and it was highly likely that our baby would spend some time in the NICU. Indeed, hours later she was there.
If there’s a chance you may deliver preterm—if you’re on bed rest or carrying more than one baby, for instance—ask to meet the neonatologist and, above all, get a tour of the NICU. “You can begin building a rapport with the staff before the birth and learn a little about what to expect,” says Terri Slagle, M.D., the Director of California Pacific’s Neonatal Outreach Program, in San Francisco.
Karen Cork, of Calgary, Canada, knew she was at risk of preterm delivery, and says that getting a sneak peak of the neonatal intensive-care unit was a real plus: “I remember seeing a beautiful twenty-four-and-a-half-weeker in her parents’ arms and thinking, If she can make it, so could our thirty-two-weeker.”
Expect To Feel Scared At First
Even with preparation, the first few days following the birth are terribly difficult. “When I saw our son after he was born, I was scared to death,” says Marybeth Roberts, a Philadelphia mother whose son, Connor, was born at 27 weeks and spent two months in the hospital. “The NICU felt cold, my hormones were high, and it was the least rational hour of my life. I didn’t know how I was going to love this tiny infant with a head the size of a tangerine.” Roberts’s feelings weren’t unusual. In fact, some parents of extremely early preemies find it difficult even to name their infant, fearing the baby will die.
No doubt when you imagined getting to know your newborn, you didn’t picture a two-to three-pound infant behind a tangle of tubes and wires. “But keep in mind that you are the baby’s parent. Even though she’s in the hospital, trust in your ability to begin parenting,” says Jeanette Zaichkin, a clinical nurse specialist at Providence St. Peter Hospital, in Olympia, Washington, and the author of Newborn Intensive Care: What Every Parent Needs to Know.
Many parents soon realize, as Roberts eventually did, that their baby is theirs to love and care for. No matter how small he is, he needs your love and touch—something technology can’t provide.
Prepare For Ups And Downs—For Both Of You
Overwhelming love, fear, anger, detachment, and helplessness are just some of the emotions you’ll probably feel feel, warns Tesler Stein, co-author of Parenting Your Premature Baby and Child: The Emotional Journey. “But perhaps the most basic feeling is powerlessness,” she says. “You couldn’t stop this from happening and you can’t make it better. I would look at my girls on the ventilators and think, Oh, if only I could breathe for you.”
It’s important to avoid blaming yourself. “I spend a lot of time telling new mothers that they didn’t cause this,” says Ellen Bifano, M.D., a clinical professor of pediatrics at the State University of New York at Syracuse and an attending neonatologist at Crouse Hospital, also in Syracuse.
Although most parents will face long days when their baby is rarely alert (preemies in the NICU spend lots of time sleeping) and days when they may receive news of medical setbacks, there will likely be better times, too, and those are the ones to savor. “Think about your baby’s homecoming,” Dr. Slagle advises.
Take Care Of Yourself—And Each Other
You’ll weather the days in the neonatal nursery a lot better if you spend some time away from it. “A nonstop bedside vigil is exhausting,” says Dr. Slagle. “At home, you wouldn’t sit at a newborn’s bassinet 24 hours a day. Every new parent needs downtime.”
Good advice, but it can be hard to follow. Three days before my daughter came home, I was en route to my hair salon and feeling like a terrible mother, an imposter: How could I be so vain while my newborn was still in the hospital? But that haircut was one of the best things I could have done for myself. “Look to your nurse to give you cues about the ideal times for you and your spouse to take a break,” says Zaichkin. “It’s okay to enjoy yourselves by taking a walk or going to a movie or dinner.”
Getting enough rest will help keep your spirits up too. “The more tired I became, the more depressed I felt,” says Cork. Unlike most parents of newborns, you can actually look forward to uninterrupted sleep while your baby is in the NICU. It’s a thin silver lining, but you may as well take advantage of this small gift.
Get Ready To Pump
During my pregnancy, I assumed I’d breastfeed my baby. But I was speechless when, the day after I gave birth, the nurses brought me a breast pump and milk bags. Many preemies aren’t yet strong enough to nurse on their own. So there I sat, listening to the whomp-whomp sound the contraption made as it sucked milk from my breasts, feeling more like a cow than an enraptured new mom. But I stuck it out, as many mothers who have sick or premature babies in the NICU are encouraged to do.
Pumping may be unromantic, but your breast milk can do wonders for your baby’s well-being. In fact, it’s higher in certain proteins and amino acids than that of mothers of full-term babies. Plus, pumping allows you to do something for your baby that no one else can.
Be patient while pumping, advise mothers who’ve been there—and be proud of what you’re able to produce. Relax, drink lots of water, and try to think about how your milk is helping your baby grow and thrive. “For the first two days, I pumped and pumped and thought, nothing was coming,” recalls Karen Cork. But the nurses took those first drops and fed them to her son. What Cork had considered “nothing” was colostrum, the fluid rich in antibodies and nutrients that all breast-feeding women produce before their milk comes in.
Expect To Take On Different Roles
How you and your partner respond to the crisis, and to each other, will greatly affect this experience. If one of you sits a cribside vigil while the other hates to visit the NICU, it can be a tough go. You may wonder, “Why is he so angry when I’m so sad?” or “Why is she accepting this when I can’t?”
“You need to acknowledge that you have separate needs and may each take on different roles during this time,” says Tesler Stein. My husband recalls wondering why he wasn’t as worried about our tiny daughter as I was. “I’d be at work and get calls from the NICU and think, Why am I okay being here? I guess I didn’t feel like our baby was ours yet. But these days if she scrapes a knee while playing it almost breaks my heart.”
Get Involved In Your Baby’s Care
It’s easy to feel like a useless outsider while the competent medical staff cares for your newborn. But your presence is terribly important. “I firmly believe that babies know the difference between a nurse’s therapeutic touch and a parent’s loving one,” says Zaichkin. Perhaps most gratifying for parents is practicing “kangaroo care,” a therapeutic-touch technique offered in some NICUs and practiced under the supervision of a nurse or doctor: The baby is carefully undressed and brought up underneath the parent’s shirt, where she’s held against Mom’s or Dad’s warm chest. “Research suggests that when an infant has skin-to-skin contact, specifically kangaroo care, he often has a more stable breathing rate and sleeps better,” explains Zaichkin. One look shows how good it is for parents. As high-tech as the NICU is, a baby’s success doesn’t rely totally on technology.
While it’ll be some time before you can bathe or diaper your baby, the valuable lessons of touch can still be learned, often with the guidance of a skilled nurse who specializes in newborns like yours. “From the beginning, the nurses encouraged us to touch Connor, and they showed us how to make skin-to-skin contact without overstimulating him,” says Marybeth Roberts. Your deep involvement and contact will greatly benefit your baby.
Take Time To Know Your Baby
One of your major tasks is to start to make your baby truly your own, even when it feels like she belongs to the hospital. Although most parents become experts at reading the monitors attached to their baby, the staff urge parents to focus on the baby instead.
Watching your newborn is not only rewarding, it helps make you feel like a parent. “We made Connor ours by watching him and learning his little habits during his NICU stay,” says Roberts. “We noticed how much food he could take at a time and how he liked having his diaper changed.”
Just because your baby is in an incubator doesn’t mean you can’t both feel more at home. “Many parents find that when they begin dressing their child in something other than hospital T-shirts, it’s a real emotional transition for them,” says Tesler Stein. (Preemie-size clothes are sold at Babies “R” Us, BabyGap and JCPenney; or by mail through the preemiewear catalog at 800-992-8469; and on the Preemie Store Web site at preemiestore.com.)
Parents can post photos of themselves and the baby’s siblings outside the incubator. “The nurses said it would help our son know who we were,” says Mayora Hiney, of Los Angeles, whose son Ciaran was born at 30 weeks and weighed only 1 pound, 14 ounces at his lowest weight. “The snapshot helped us feel okay about leaving him.”
Record Your Baby’s Milestones
During my daughter’s NICU stay, I couldn’t relate to certain infant-care and baby memory books. My daughter was invisible in them: I couldn’t find her story in the chapters on the first month of a baby’s life, and I couldn’t write in her baby book because the second page was “Baby’s Homecoming.” Rather than mourn this loss, many parents find great solace in creating their own daily journals. “It’s hard to see notable changes at first because so many days feel like two steps forward and one step back,” says Roberts, “but when I leafed through my journal and read things like his previous weights, I could see the huge progress he was making.” Other parents fill the pages with their questions, fears, and hopes.
Believe it or not, you will want to remember this time. Once you bring your baby home, you’ll probably feel tremendously proud and awestruck at what you’ve all accomplished. Stephanie Lerner-Ernsteen, a social worker and president of the NICU parent-support group at Evanston Hospital, where her own premature twin girls stayed, still can’t believe that her twins’ arms were once the size of her own little finger.
Make The Nurses and Staff Part Of Your Team
My husband and I felt like we had two important jobs while our daughter was in the NICU: Take care of her as well as we could, and befriend the nurses, who were at her side whenever we weren’t. The latter part was easy. The NICU nurses were extraordinarily caring, devoted and skilled caretakers of both the babies and their parents.
But the nurses are just one part of the medical team, which includes neonatologists, social workers, and respiratory therapists. “We got close to the staff because ultimately the only thing you have is your trust in them,” says Roberts, who asked the same questions over and over again. “It helped us build a relationship and learn what was going on with our son.”
Talk To Other Parents of Preemies
Though the NICU will be bustling with people and activity, it can still feel very lonely at times. But hospital support groups, some facilitated by a medical social worker, can be immensely helpful. Meeting survivors of the NICU may be the most inspiring and powerful boost for parents whose babies are facing a long stay. And something about the NICU experience draws parents back—it’s not unusual to see a parent visit with a beautiful healthy toddler. “On our third day, a mother brought in her baby who had spent time here. I asked her, ‘How did you get through months? I can’t even get through this day.’ It helped so much to talk to her,” recalls Roberts.
Believe In Miracles
Although my husband and I are sorry that we ever had to discover the NICU, we’ll always be grateful for the medical miracles that saved our daughter’s life. And even with all the latest high-tech equipment, new drugs, and sensitive monitors, there is room for the wonder and awe that accompany the birth of any baby. Cork feels inspired every time she looks at her son. She says, “I am still so proud of what he did. He was four pounds, four ounces at his lowest weight, and he had trouble breathing. Now he’s sitting here smiling and eating his socks!” Lerner-Ernsteen still draws strength from the thought of her twins’ struggle for survival. “They were barely a pound and they were fighting for their lives. How could I give up?” she says. “They’re still my heroes.”
Sharon Epel is a freelance writer.