Carolyn Emily

Carolyn
Emily
Nettleton

Our experience with prematurity

"Everyone told us that twins are usually early. We thought we were prepared. We imagined our twins might arrive three or four weeks early, and we would take them home. We never imagined just how early they might arrive, the extent of dangers they might face, and how long they would remain under hospital care before coming home.

Many twins spend at least a few days in the NICU -- the Neonatal Intensive Care Unit. If your twins are premature, under 5 pounds, or at risk of physical complications they may be in the NICU for a long time. All of these circumstances are much more likely with multiples than with singletons.

Our daughters Carolyn and Robyn were born by emergency caesarean section at 31 weeks -- 9 weeks early. Some twins we met were born as early as 25 weeks, and others were close to full term. Some arrived naturally and others by caesarean section. Of triplets we met, two sets were also born at 31 weeks -- and others were born both earlier and later.

Most of the babies we met in the NICU at Women's College Hospital went home at close to full term. A few were kept well beyond full term. And, during our stay in the NICU some babies died. One was our daughter Robyn, who died of complications from twin transfusion, the condition that caused our twins' emergency delivery. Another was a triplet who died just days before her brothers went home.

At 1295 g or 2 lbs, 13.5 oz, Carolyn was small. The distance from her head to her bottom was six inches. Imagine two pounds of butter -- she was a little bigger than that. Her first baths were in a metal mixing bowl. In the NICU, Carolyn was about average size. Many babies in the unit had been born at under 1000 g. With a big head, big eyes and long, gangly limbs Carolyn looked more like ET than the expected Gerber baby.

Other than her first, tentative days and the inevitable onset of "premature apnea" (they all seem to forget to breathe at some point), Carolyn made only forward progress. This is not always the case -- many premature babies develop illnesses or complications that delay their release from hospital.

Prenatal classes and two hospital tours didn't prepare us for the NICU. It was mentioned during one tour when we briefly glimpsed one "preemie" -- who looked so forlorn and scrawny we didn't realize this is the normal appearance of a healthy premature baby. After becoming NICU parents, we discovered that some hospitals offer special prenatal NICU tours -- which we strongly recommend for every couple expecting multiples.

As the "intensive care" in "NICU" suggests, various serious circumstances require babies to stay in the NICU. Prematurity literally means the babies cannot yet survive on their own. Babies with jaundice or low birth weight may need only simple treatment and observation. Other common disorders associated with prematurity are much more serious -- including lung and stomach disorders, infection and disease, and spells of apnea and brachycardia (forgetting or stopping breathing).

At first glance, you would be forgiven for thinking of the NICU as a laboratory. Monitors, metal, tubing, glass and nurses fill the room. The babies are under glass -- usually in isolettes (a trademark name for incubators) that control temperature and humidity for the baby. The NICU is a busy but clean environment and certain procedures must be followed. Except for the babies, all people in the NICU must be scrubbed and gowned -- and must scrub in between handling any two babies, to prevent the spread of infection.

After a while, "our" NICU began to seem more like a sanctuary than a laboratory. Women's College Hospital employed a neonatal infant development and care program called NIDCAP that minimizes the frequency of medical intervention with the child, encourages parental participation, and fosters a caring approach in the medical team.

(Unfortunately, not all hospitals support the same degree of parental involvement and communication.)

As parents, we were permitted unlimited access to the NICU and were encouraged to participate in Carolyn's care -- a challenge we accepted with enthusiasm. Our responsibilities involved changing, feeding, bathing, and watching, whenever we could attend. Judy was at the hospital all day, joined by Michael as permitted by his work schedule. While the hospital tried to schedule the same nurses where possible, over 40 nurses cared for Carolyn during her seven week stay -- but her mommy and daddy were there, without fail, every day. We later learned medical evidence suggests babies with high parental involvement develop and grow faster than others -- and our experience and that of the other "regulars" agrees with this theory.

To track Carolyn's progress we photographed and videotaped her often and we kept a daily log of feedings, weight, significant developments, and visitors and nurses' names. Preparing the log was therapeutic -- and now it helps us remember and make sense of all the precious details concerning her stay.

We were both fascinated and frightened by the treatments applied to Carolyn. A ventilator provided positive air pressure into her windpipe through her mouth to "force" breathing. Carolyn was on the ventilator for two days -- a relatively short time as some children need breathing assistance for much longer. Two umbilical catheters -- one arterial and one venal -- were used for administering medicine and taking blood samples. For two periods of two days, Carolyn was also under strong lights to treat her jaundice.

Head ultrasounds (to check for abnormal brain development) and body X-rays were performed regularly in the NICU. But the worst of all -- for the babies, the nurses and the parents -- were eye tests. A baby's eyes must be clamped open to permit testing, and all babies scream with indignity during this procedure.

An intravenous needle inserted into Carolyn's wrist (later in her other wrist, alternate feet and finally her head) fed her sugar, fat and vitamins for the first four days. A feeding tube was threaded into her stomach through her nose. Her first feedings at four days were 12 ml every 2 hours -- progressing to about 30 ml every 3 hours for the next four weeks (plus persistent breast feeding attempts). Judy determinedly pumped breast milk that was fed to Carolyn in the hospital -- and we froze enough excess to feed Carolyn for several months. We also waited until after Carolyn was breast feeding steadily to allow bottle feedings in Judy's absence.

While the treatments were interesting, the monitors were terrifying. Three electrodes taped to Carolyn's chest were connected to a monitor displaying her heart and breathing rates. A photosensor taped to her foot checked the amount of oxygen in her blood. In the NICU, it was unnerving to hear these monitors sounding frequently. However, whenever Carolyn's monitor sounded our own hearts stopped -- particularly in the first few days -- even when we knew most were false alarms.

For a while, it also seemed like we didn't have a baby. Judy was pregnant, and then she wasn't, but we didn't have Carolyn yet. Our nurses helped make the NICU a friendly place -- taping an ornate name sign on Carolyn's isolette; saving her first hair cut when the IV was placed in her head; pointing out and praising every little stage of her development; and quietly encouraging us to participate in her care.

When her isolette was changed, instead of simply noting the date her nurse taped on a sign that read "Carolyn's Fall Retreat -- 18 Sept 1991".Carolyn stayed in the NICU for ten days. By then, she was stable, healthy and steadily gaining weight, and was moved to a Transitional Care Unit (TCU). Once she was maintaining her own temperature she graduated from her isolette to a "cot" -- a plastic bassinette mounted on a changing table. When she achieved five pounds, was able to breast feed and had been healthy and stable for a few weeks, she was released -- after a total stay of about seven weeks in the hospital, and still two weeks ahead of her due date.

We bade farewell to the NICU and brought Carolyn home.

See Robyn's story.