What to Expect the First Year (132 page)

“My baby is in the NICU, and it's scary seeing all that medical equipment he's hooked up to … all those tubes and wires.”

A first look at a NICU can be frightening, especially if your baby is one of the tiny patients in it. Knowing what you're looking at can keep your fears from overwhelming you. Here's what you can expect in most NICUs:

A main nursery area comprising a large room or a series of rooms.
There may also be a couple of isolation rooms in an area separate from the main nursery. Adjoining may be several small family rooms where moms can express milk (breast pumps are usually provided), and where families can spend cuddling time with their babies as they get stronger.

An often busy atmosphere.
Depending on the size and occupancy of the NICU, there may be many nurses and doctors bustling about, treating and monitoring babies. Other parents may also be caring for or feeding their own infants.

Relative quiet.
Though it's one of the busiest places in the hospital, it's typically also one of the quietest. That's because very loud noises can be stressful for tiny babies or even harmful to their ears. To help keep the sound level down, you should talk quietly, close doors and isolette portholes gently, and take care not to drop things or place items loudly on the tops of incubators. (One sound that is important for your preemie, however, is the sound of your voice;
click here
.)

Dim lights.
Since still-sensitive eyes need protection, too (after all, they'd be exposed to no light at all if they were still in the womb), NICU staff usually tries to control the brightness in the nursery. While bright lights are often necessary so that the doctors and nurses can do what they need to do (and see what they're doing) to keep your baby healthy and thriving, most NICUs do their best to keep the lights down to simulate life in the womb. Putting a blanket over your baby's isolette when the lights are bright may help somewhat as well—though ask the staff first, because it's also important that your baby not be kept in the dark all the time. Research shows that constant dim light can disturb body rhythms and slow the development of normal sleep-wake cycles. In fact, preemies who are exposed to natural cycles of light and dark that mimic day-night rhythms gain weight faster than those kept around-the-clock in either bright light or low light.

Strict hygiene standards.
Keeping germs that can spread infection (and make sick babies sicker) out of the nursery is a major priority in the NICU. Each time you visit, you'll need to wash your hands with antibacterial soap or sanitizer (there's usually a sink or dispenser for this purpose right outside the nursery doors). You may be asked to put on a hospital gown, too. If your baby is in isolation, you may also need to wear gloves and a mask.

Tiny babies.
Some will be in clear incubators or isolettes (bassinets that are totally closed except for four portholelike doors that allow you and the staff to reach in and care for your baby) or in open bassinets. Some may be on warming tables under overhead heat lamps. Some very small babies may be wrapped in a plastic (polyethylene) skin wrap to minimize the loss of fluids and body heat through the skin, particularly in the few hours right after birth. This helps preemies keep warm—particularly those less than 4 pounds, who lack the fat necessary to regulate body temperature, even when they're swaddled in blankets.

An array of apparatus.
You'll notice an abundance of technology near each bed. Monitors that record vital signs (and will warn, by setting off an alarm, of any changes that need prompt attention) are hooked up to babies via leads that are either held on the skin with gel or inserted by needle just under the skin. In addition to a monitor, your baby may be linked to a feeding tube, an IV (via arm, leg, hand, foot, or head), a catheter in his umbilical stump, temperature probes (attached to the skin with a patch), and a pulse oximeter that measures the oxygen level in his blood using a small light attached to the hand or foot. A mechanical ventilator (breathing machine) may be used to help your baby breathe normally if he is less than 30 to 33 weeks gestation. Otherwise, your baby may receive oxygen through a mask or delivered into his nose through soft plastic prongs attached to tubing. There will also be suction setups that are used periodically for removing excess respiratory secretions, as well as lights for phototherapy (bili lights), used to treat babies with excess jaundice. (Babies undergoing this treatment will be naked except for eye patches, which protect their eyes from the bili lights.)

A place for parents to cuddle (and kangaroo) their babies.
In the midst of all this high-tech equipment, there will likely be rocking chairs or gliders where you can feed or hold your baby.

A large team of highly trained medical specialists.
The staff caring for your baby in the NICU might include a neonatologist (a pediatrician who has had special training in newborn intensive care), pediatric residents and neonatal fellows (doctors undergoing training), a physician assistant or nurse practitioner, a clinical nurse specialist, a primary nurse (who will be your baby's primary caregiver as well as your primary go-to), a nutritionist, a respiratory therapist, other physician specialists (depending on your baby's particular needs), social workers, physical and occupational therapists, x-ray and lab technicians, and lactation specialists.

Portrait of a Preemie

The parents of full-term newborns may be surprised when they first see their babies. The parents of preterm infants are often shocked. The average preemie weighs between 1,600 grams (about 3½ pounds) and 1,900 grams (about 4 pounds, 3 ounces) at birth, and some weigh considerably less. The smallest can fit in the palm of an adult hand and have wrists and hands so tiny that a wedding band could be slipped over them. The preemie's skin is translucent, leaving veins and arteries visible. It seems to fit loosely because it lacks a fat layer beneath it (making it impossible for baby's temperature to self-regulate), and often it is covered with a fine layer of prenatal body hair, or lanugo, that has usually been shed by full-term infants. Because of an immature circulatory system, you may notice some skin coloring changes when you touch or feed your baby. Your little one's ears may be flat, folded, or floppy because the cartilage that will give them shape has yet to develop. Preemies often lie with arms and legs straight rather than classic newborn style—curled or tucked in—not only because their muscles still lack strength, but because they never had to fold to fit in a cramped uterus as full-term babies do.

Sexual characteristics are usually not fully developed—testicles may be undescended, the foreskin in boys and the inner folds of the labia in girls may be immature, and there may be no areola around the nipples. Because muscular and nerve development are not complete, many reflexes (such as grasping, sucking, startle, rooting) may be absent. Unlike term babies, a preemie may cry little or not at all. He or she may also be subject to periods of breathing cessation, known as apnea of prematurity.

But the physical characteristics of preemies that make up this portrait are only temporary. Once preterm newborns reach 40 weeks of gestation, the time when, according to the calendar, they should have been born, they very much resemble the typical newborn in size and development.

“The doctors say my preemie will have to spend many weeks in the hospital. How long is it likely to be—and how will I be able to handle her long stay?”

Chances are, you'll be able to bring your baby home from the hospital at about the same time you would have if she had arrived at term—about 37 to 40 weeks gestational age—though if your preemie faces other medical challenges besides being small, the stay may be extended. But no matter how long your baby's hospitalization ends up being, it will likely feel even longer. To make the most of that time and to even help it pass somewhat faster, try:

Striking up a partnership.
Parents of a preemie often begin to feel that their baby belongs less to them and more to the doctors and nurses, who seem so competent and do so much for him. But instead of worrying that you can't measure up to the staff, try teaming up with them. Get to know the nurses (easier if your baby has a primary nurse in charge of care at each shift, which is likely), the neonatologist, and the residents. Let them know you'd like to do as much of the baby care as possible—diapering, swaddling, bathing—which can save them time, help you pass yours, and help you feel less like a bystander and more like an involved participant in your little one's care.

Getting a medical education.
Learn the jargon and terminology used in the NICU. Ask the in-charge nurse to show you how to read your baby's chart. Ask the neonatologist for details about your baby's condition and for clarification when you don't understand. Parents of preemies often become experts in neonatal medicine very quickly, throwing around terms like RDS and intubation as easily as a neonatologist. See
box
for some frequently used terms.

Being a fixture at your baby's side.
Some hospitals may let you move in, but even if you can't, you should spend as
much time as possible with your baby, alternating shifts with your spouse as needed. This way you will get to know not only your baby's condition but your baby as well. (If you have other children at home, however, they'll also need you now.
Click here
for more on siblings).

Making your baby feel at home.
Even though the isolette's only a temporary stop for your baby, try to make it as much like home as possible. Ask permission to put friendly-looking stuffed animals around your baby and tape pictures (perhaps including stimulating black-and-white enlargements of snapshots of mommy and daddy) to the sides of the isolette for her viewing pleasure. Ask if you can pipe in a recording of your voice for when you're not there, or soft music. Remember, however, that anything you put in the baby's isolette will have to be sterilized and obviously can't interfere with life-sustaining equipment.

Readying your milk supply.
Your milk is the perfect food for your premature baby. Until she's able to nurse, pump milk for indirect feedings and to keep up your supply. Pumping will also give you a welcome feeling that you're “doing something.”

Hitting the shops.
Since your baby arrived ahead of schedule, you may not have had time to order furniture, layette items, and other necessities. If so, now's the time to get online and get that shopping done. If you feel superstitious about filling your home with baby things before she is discharged from the hospital, fill up the cart but don't complete the order until you're closer to the homecoming (especially because you won't know what size to buy those diapers or baby clothes in just yet). You'll not only have taken care of some necessary chores, but will also have filled some of the long hours of baby's hospitalization and made a statement (at least to yourself) that you're confident you'll be bringing your new bundle home soon.