Terry Sauer, RN, has spent her career surrounded by premature infants. As the manager of the neonatal intensive care unit (NICU) at Deaconess Billings Clinic in Billings, Montana, she cares for several babies at a time, each facing an uncertain future. Lifesaving technology has improved dramatically in the 25 years since Sauer first stepped into a NICU, but one thing has remained constant: Today's parents are just as worried as ever.
Preparing parents is a large part of Sauer's job. Before any baby goes home, Sauer gives moms and dads the information -- and the confidence -- they'll need for the work ahead. If a premature baby (born before 37 weeks of pregnancy) has just joined your family, you're not alone -- about 13 percent of babies are born early. The coming months will be filled with challenges and uncertainty, but remember that every child is different. Only your doctor or nurse can say what type of care your baby needs, and nobody can say for sure how your baby will respond. All you can do is your best. Here are some important things to keep in mind as you care for your new baby.
How old is your baby?
A premature baby who is 3-months-old is not developmentally the same as a full-term baby who is 3-months-old. As you watch your baby grow, it's helpful to keep in mind his "gestational age" (the number of weeks since he was conceived) and adjusted age (his age minus the amount of prematurity). A full-term baby is 40 weeks old at birth. When that full-term baby is 1-month-old he will have the same gestational age as a 4-month-old preemie who was born 3 months prematurely. Even though the preemie has been out of the womb longer, both babies have a gestational age of 44 weeks and the preemie will have an adjusted age of 1 month.
Gestational age is most useful when talking about babies younger than 40 weeks. After that, it's more common to refer to adjusted age.
Interacting in the NICU
Hospitals will keep a premature infant in the NICU until he's stable enough to take home, usually at 36 to 38 weeks gestational age. Depending on how early your baby arrived, you're likely to be spending a lot of time in the NICU.
Preemies are often very thin and their skin may seem transparent, with red blood vessels visible because there's not much fat under the skin. At first it can be very scary to see your tiny baby in an incubator hooked up to an oxygen supply, intravenous lines for food or medicine, or monitors to check heart rate and breathing. Even though you might feel helpless when there are so many machines and barriers between you and your baby, remember that your baby needs you more than ever. Touch and talk to your new baby as much as possible. As the tubes are removed, you'll be able to hold your baby and help with bathing and care.
Most NICUs will allow you to take your baby home when he can maintain a constant body temperature in a crib, feed well by breast or bottle, and gain weight steadily. Some hospitals have a transition period before discharge when parents can room together with the baby in the hospital until they are confident about taking him home.
Common complications among preemies
In general, the closer to the due date that a baby is born, the better his or her chances are for being born healthy. Even a few days or weeks can make a huge difference: A baby born at 23 weeks has only a 10 to 35 percent chance of surviving and greater than 50 percent chance of a long-term disability. At just 25 weeks, survival improves to between 50 and 80 percent, and the chances of a long-term disability drop to between 15 and 25 percent. At 27 to 29 weeks, survival rates are above 90 percent, and disability rates fall to less than 10 percent. Between 34 and 37 weeks, survival rates are excellent (greater than 98 percent), and chances of long-term disability are slim -- less than 5 percent.
Certain complications are very common -- almost universal -- among preemies. These include sleep apnea (when breathing stops during sleep), trouble eating (because of weak and uncoordinated muscles), and jaundice (yellowish skin because the liver isn't working efficiently). Other common problems include abdominal hernias, acid reflux, breathing difficulties, abnormal blood sugar regulation, and heart development that remains incomplete.
If your baby has any of these conditions, the medical providers in the NICU will treat them and teach you how to care for your baby at home until they have resolved. These common conditions are usually short-term complications. If your baby was very premature (before 28 weeks) he or she may have additional problems that may be more severe or take longer to overcome.
Growth and development
Premature babies usually begin life just a little behind the curve, compared to babies that are born at the expected time. They are generally smaller and may grow more slowly at first. The good news is they have plenty of time to catch up. According to the American Academy of Family Physicians, most children born early eventually reach a normal size for their age in a year or two. Many premature babies also reach major developmental milestones right on schedule, Sauer says. "They may be small, but they can still sit up at six months," she says.
Your child's doctor or nurse practitioner will want to check your baby regularly to make sure he's growing and developing at a healthy pace. If your baby seems to be falling behind in his or her growth, try not to worry too much. Premature babies often grow in spurts.
A few babies who are born prematurely will remain small for their entire lives. According to a report from the University of Wisconsin, stunted growth is most common among babies who were less than 2.5 pounds at birth (which is considered a low to extremely low birth weight), who were small for their gestational age at birth, who suffered a long illness, or who were slow to gain weight in the hospital nursery.
Feeding and nutrition
As a rule, premature babies need more than just breast milk or standard formula to thrive. Your baby may be prescribed iron drops, vitamin supplements, or, if your baby is bottle-fed, a special nutrient-rich formula.
Your baby's medical provider can also help you plan a feeding schedule. According to the American Academy of Family Physicians, most premature infants need to eat eight to 10 times a day. If they go more than four hours between feedings, they can easily become dehydrated. It's not unusual for infants to spit up regularly, but check with your medical provider if your baby has frequent problems holding food down after feeding.
Premature babies often have trouble swallowing for the first few months, so there's no rush to introduce solid food. Your doctor will probably recommend waiting about six months after his original due date (not his birthday). Start with iron-fortified rice cereal and move on to other food only if your baby does not have any problems.
Germs that merely make other babies miserable could be a serious threat to your baby. You can never completely protect your child from exposure to germs, but you can take steps to keep him as healthy as possible.
First, don't give up on breastfeeding. This may be difficult for women with preemies since they are often separated while the baby is in the hospital. However, you can begin pumping your breasts to establish a good supply of milk, and nurseries will often feed this milk to the baby while he or she is in the hospital after week 32 to 34. It may even be possible to breastfeed your preemie in the hospital under some circumstances.
Try to keep your child away from places where people -- and germs -- tend to gather. "We always tell our parents to avoid taking their children to daycare (centers), malls, churches, and similar places," Sauer says. "It really helps cut down on infections." According to the University of Wisconsin, most babies can start mingling with crowds after they've been home for three months.
As hard as it may be, you may also have to keep some visitors away during your baby's first three months. Nobody with a cold or the flu should come through the door unless they absolutely have to. Any members of the household who feel ill should wash their hands before touching the baby.
In addition to the usual recommended immunizations, your child may need to receive extra shots to ward off infections. A flu shot at six months of age might help prevent a serious illness down the road. If your baby's lungs are still not fully formed, your doctor may also suggest that your baby be treated with palivizumab, a mouse antibody that can protect your baby from RSV (respiratory syncytial virus). RSV is a very common infection that makes the rounds every cold and flu season. Premature infants who receive palivizumab can still catch the RSV bug, but they are less likely to become seriously ill.
Even if you've done everything possible to protect your baby, you should stay alert for signs of infection:
- Fever or chills
- Poor skin color
- Unusual trouble keeping down food
- Unusual trouble breathing or increased apnea
- Unusual sluggishness
First, the good news: Premature babies tend to sleep more hours per day than full-term babies. On the downside, they also wake up more often. Be prepared to comfort your baby several times during the night. Make sure you put your baby to bed on his back, and not on his stomach.
Fun, games, and affection
Like any other baby, premature babies thrive on love and attention. Hold him closely, sing a song, show him a picture book, and hold him some more. Just remember that premature babies also need plenty of rest. If your baby turns away from you, cries, or generally acts irritable or distracted, he may need some quiet time.
Premature babies often need special care when they come home. For instance, although it's uncommon, it may be necessary to provide supplemental oxygen to a baby for a few months while his lungs develop if your doctor recommends it. Your baby's doctor will give you thorough instructions for handling any equipment or medications before you take your baby home. The doctor may also suggest that you learn to perform infant cardiopulmonary resuscitation (CPR).
Bear in mind, even when your baby is out of the woods you might need to take him to see specialists for several months, even years, to monitor his development. These specialists might include neurologists, ophthalmologists, or physical therapists.
Caring for a newborn baby is hard enough, but caring for a premature baby with special needs can seem overwhelming at first. Don't be afraid to ask for help, and remember to take time out to relieve stress and recharge your strength. Through it all, just remember to never lose sight of the big picture: Despite all the potential problems, most premature infants born in the United States these days grow up to be healthy adults.
"We encourage parents to keep things as normal as possible," NICU nurse Sauer says. "At some point, they have to look past all of those monitors and see the child."
Interview with Terry Sauer, RN, manager of Deaconess Billings Clinic Neonatal Intensive Care Unit.
Premature Birth. Mayo Clinic. January 14, 2004.
U.S. Centers for Disease Control and Prevention. National Center for Health Statistics. Birthweight and Gestation. http://www.cdc.gov/nchs/fastats/birthwt.htm
American Academy of Family Physicians. Premature babies: Caring for your baby. October 2000.
Care of the Premature Infant: Part I. Monitoring Growth and Development by David E. Trachtenbarg, M.D., And Thomas B. Golemon, M.D. American Family Physician, May 1, 1998 http://www.aafp.org/afp/980501ap/trachten.html
Meriter Hospital. Understanding and Parenting Your Preemie. http://www.meriter.com/content/?cm_id=580
Infectious Diseases in Children. Still long road ahead in development of prophylaxis of RSV. April 11, 2003.
Your Over-35 Week-by-Week Pregnancy Guide by Kelly Shanahan, MD. First edition, 2000, Prima Publishing, Roseville, California.
Your Preemie's First Year by Amy Tracy http://www.babiestoday.com/articles/breastfeeding/a-preemie-s-first-year-188/
Nemours Foundation, KidsHealth.org. Taking Your Preemie Home. http://kidshealth.org/parent/pregnancy_center/newborn_care/preemie_home.html