Daniel Edward, named after his two grandfathers, was born on Sept. 11, 1990, weighing just 1 pound, 11 ounces. A full-term pregnancy is 40 weeks; I had only reached my 28th week.
The first time I saw him was in a Polaroid photograph the nurses sent to my hospital room. (I was recovering from preeclampsia, the reason for Daniel's premature birth and my emergency C-section, and I couldn't get to the intensive-care nursery to see him in person.) He seemed so unbelievably fragile; the doctors gave him a 50-50 chance of survival.
But Daniel was a fighter, and 24 hours after his birth, my husband pushed me in a wheelchair to the neonatal intensive care nursery, or the NICU (pronounced NIK-u), as I would soon learn to call it, to see our little guy. There he was, the tiniest baby in the nursery, sprawled out on a sterile tray-like bed. A big blue tube, which pumped air from the respirator into his lungs, kept me from getting a good look at his face. A web of wires, leading to a heart monitor, covered his translucent skin. On his barely two-inch-long foot was a glowing red light that monitored his pulse. This was my son. I was his mother. And I felt completely helpless and terrified. I wanted to run from the room as the doctors and nurses explained his medical condition.
Nurturing in the NICU
It took several more visits to the NICU before I felt comfortable enough to listen to the nurses and doctors tell me about Daniel's health. His medical condition was typical for a baby born so early: He needed continuous supplemental oxygen until his lungs matured, and his breathing required constant monitoring. He was fed through an IV because he couldn't suck or swallow.
I was incredibly frightened by all this, but slightly comforted when I learned that I was not alone. Each year, more than 400,000 babies are born three or more weeks before their due date. And with increasingly sophisticated medical technology, more and more tiny babies like Daniel are not only surviving -- but growing up to be normal and healthy. The doctors and nurses caring for my son assured me that everything medically possible would be done to ensure his future.
So then, what could I -- his mother -- do? As it turns out, a lot. I discovered that the sound of my voice comforted him. When his heels were pricked every four hours for blood tests, I would talk to him quietly about our cat, Hana, and his very own room, both of which were waiting for him at home. My touch also seemed to soothe him. Placing one hand firmly on Daniel's bottom and cupping the other around his head often helped him to fall asleep in the noisy NICU. And pumping and storing my breastmilk so it would be ready when needed was something only I could do.
I now know that this intensive-care parenting not only helped me feel more like Daniel's mother, it also helped him. "One of the most important factors affecting how a preterm baby grows and develops is the parents' participation," says Jane E Brazy, MD, a neonatologist at The Center for Perinatal Care at Meriter Hospital in Madison, Wisconsin. "It's important for parents to know they're not just visitors."
To help parents feel more involved, many NICUs across the country have implemented "family-centered care." Of course, how much you can do depends on your baby's health. During the first day, simply being near your baby, speaking softly and gently touching his head or bottom can help him feel more secure. Daryl Morehart, mother of 3-pound, 6-ounce Nathan from Austin, Texas, kept a stuffed animal she'd slept with throughout her pregnancy near her son, providing him with a familiar, comforting scent. Some mothers place cotton balls soaked with their breastmilk near their babies.
As your preemie's health improves, you can participate in routine caregiving, such as changing diapers, taking temperatures and feedings. Many parents say that holding your diaper-clad infant on your bare chest (known as kangaroo care) also creates an extra-special closeness.
Preparing for homecoming
Before a preemie comes home, "most nurseries require that the baby keep her body temperature up without being in an incubator, take all feedings by bottle or breast and gain weight daily," says Dr Brazy. Unless your baby needs surgery or has ongoing medical problems, she'll probably be ready to go home around the date she would have been born had she gone fullterm. Some hospitals send babies home with monitors so parents can watch for apnea episodes (in which a baby briefly stops breathing), and some who have weak lungs also go home with supplemental oxygen. My son went home on both. Fortunately, because of the time I spent with Daniel in the hospital, I felt prepared for his homecoming -- though anxious.
Indeed, most parents of preemies feel overwhelmed when they first get home. "You go from having tons of support in the hospital to being totally alone," says Kris Winterowd, of Santa Fe, New Mexico, mother of Lars, who was 2 pounds at birth. "You need to learn that you can make mistakes and your baby will still be OK."
In the meantime, creating a support network can help you feel less isolated. To find other families or a local preemie support group, ask your hospital social worker for recommendations. You can also try Internet support groups and chats. To find a list of these support groups, log onto www.preemies.org.
Knowing what to expect in those first months after homecoming can also relieve some anxiety. Here are some of the most common questions asked by preterm parents:
How can I keep my baby healthy?
"Normal, healthy children will get a cold and be OK, but colds in preemies can lead to more serious complications," says Judy Bernbaum, MD, director of the neonatal follow-up program at Children's Hospital of Philadelphia. To reduce the chance of illness, Dr Bernbaum recommends practicing preventative care by insisting that people wash hands before picking Baby up, avoiding contact with people who may be sick and staying away from crowds.
Is my baby eating enough?
Whether feeding by bottle or breast, your baby may need frequent feedings -- as often as every two to three hours -- for optimal growth. If you're bottlefeeding, your pediatrician may prescribe a formula specifically designed for preemies.
If breastfeeding, you may need to supplement with a slightly higher-calorie formula if your baby needs those extra calories. Do not supplement without consulting your pediatrician, however.
Some preemies develop a digestive disorder, called gastroesophageal reflux (GER), that affects their ability to eat. "It's like acid indigestion and can cause discomfort," Dr Bernbaum says. "If left untreated, a baby may stop eating altogether." Symptoms include eating only small amounts, spitting up and/or fussing after feeding. The baby may also arch her body during feedings. If you suspect GER, consult your doctor.
When will my baby "catch up" to the other babies?
Your baby should achieve milestones in the same sequence as other kids (rolling over, crawling, then walking), but she might hit them a little later.
"If parents are using developmental charts, they should use their baby's adjusted age," Dr Bernbaum says. To calculate, subtract the number of weeks or months between your baby's birthdate and his due date. For example, if your baby is now five months old and he was born two months early, he has an adjusted age of three months. Doctors typically evaluate a preemie according to the adjusted age until he is about two or three years old.
Making sure your baby is developing normally and keeping him healthy can seem stressful at times. I still remember how much extra care Daniel required (much more than his fullterm brother). There is an upside though. Because of Daniel's special needs and because he was a tiny infant much longer than most children are, I really got to know him well. The time I spent nurturing Daniel, first in the hospital and then at home, created an early bond between us -- a special closeness that continues to this day, almost nine years later.