Sick Child Awakens Parents to Value of Time Together

On the Sunday before I learned my baby would need surgery, I dolled her up for the Christmas card photo. I tried pinning her wispy blond hair in pigtails, a do that had been mine decades before.

During the ill-fated coif’s brief existence, Erin and I engaged in a game of peekaboo--she on one side of the bathroom door, I on the mirrored side. It was a sweet sensation, glancing first at my adult image, then at this giggly little girl looking as though she had walked out of my parents’ old home movies.

None of this has anything to do with the ordeal our family was about to endure, except that I would recall the moment often over the next few weeks.

Two days after the photo session, Erin came down with a cold and high temperature--her first fever. My husband, Mike, took her to the pediatrician, who ordered chest X-rays to check for “pneumonia or other.”

“This is definitely ‘other,’ ” the radiologist told our doctor. More than half of Erin’s intestines appeared in her left lung cavity, indicating a herniated diaphragm.

For 15 months, a dangerous birth defect had gone undetected in our robust and cheerful child. A hole in the muscles between her abdomen and lungs had allowed Erin’s bowels to creep upward. Usually, such hernias cause obvious breathing difficulties and are caught at birth. But Erin showed no symptoms at all.

Surgery was urgent, but doctors wanted Erin’s cold to subside before putting her under anesthesia.

The next few days were weighted with fear and grief. We learned enough about Erin’s condition to terrify us, but not enough to rein in our wild imaginations. I paced the floors of our home. My husband prompted me to change out of my bathrobe in the morning and to eat dinner at night.

*

It took the wise words of a stranger to yank me from my abyss. On a Saturday morning, five days into our limbo, Erin underwent more X-rays at Long Beach Memorial Hospital. This time, radiologists forced barium up her nose as she screamed in terror.

I waited outside the X-ray room, sobbing as Mike helped the radiologists hold Erin down. A woman sitting nearby with her daughter told me that she understood my state of mind. When her child had open-heart surgery as an infant, she didn’t think she could cope. Now the girl is a healthy 7-year-old.

“Cry when there is nothing that can be done,” the woman said.

I remember that day as my re-entry into some semblance of sanity--the day I decided I had no choice but to muster a little faith in modern medicine, the day I started putting Erin ahead of my fears.

Erin pulled out of her cold early the next week. Surgery was scheduled for Dec. 16.

My most wrenching moment was kissing her goodby as a nurse pried her from my arms. Erin however, had just been given a sedative and--fascinated with the nurse’s hair--happily dismissed me.

The surgeon said the operation would take two hours. We watched the clock from 11 a.m. until 1:15 p.m., when we were paged in the hospital lobby. A nurse told us that the doctor had discovered a second hole and would need another 45 minutes. Rather than panic, Mike and I focused on the positives: Thank God for that fortuitous X-ray.

An hour later, the surgeon appeared in the lobby. “Erin is fine,” he said.

I steeled myself before entering Erin’s room in the pediatric intensive care unit. Bandages covered my baby’s torso. There were tubes everywhere--in her nose for oxygen, in her back for epidural anesthesia, in both sides of her chest to drain mucus from her lung cavities, in her right arm for intravenous fluids. Her left hand was tied to the bed to prevent her from tugging at the apparatus.

She would open her eyes and look at us drowsily, indifferently, then drift off again. She cried weakly whenever a nurse fiddled with her IV or a respiratory therapist tapped on her chest. I stroked her hair and forehead--all that was available for me to touch--and fought back my own tears.

Days and nights melted together. Mike and I caught snatches of sleep at home in six-hour shifts. I conducted my visits to the silent house with businesslike efficiency--mail, bed, shower--purposely avoiding Erin’s toys and empty crib.

Our angel returned to us in wondrous moments day by day. “Look!” Mike said the day after surgery, nudging me from a nap. One of us had loosed Erin’s hand from the crib to hold it for a while, then forgot to retie it. She seized the opportunity to slip her two middle fingers in her mouth--a familiar and delightful sight.

*

On the third day, she reached for my headband. And on the fourth day, when she was taken off morphine, Erin’s spirit rebounded altogether. By evening, she was clasping musical toys between her feet and manipulating them with her unfettered hand.

Erin’s acceptance of her situation was consoling and heart-breaking. For days, the same child who demands her freedom after 30 minutes in a high chair or car seat lay strapped inside a crib. For days, the same child who loves waffles for breakfast and milk anytime helplessly smacked her dry mouth, deprived of even water.

Yet somehow she managed to smile, laugh, find amusement in her father’s silly faces or the lights above her bed. She was mad at the doctors and nurses, but not at the two people who had brought her to this torture chamber. As long as Dad and Mom were nearby, and white coats weren’t, life was OK. Babies are so forgiving.

Four days before Christmas, the surgeon unwrapped Erin like a gift. So long to the chest tubes, off with the oxygen tube, farewell to the heart monitor. He lifted the bandages, revealing a tidy scar running diagonally across her belly. A nurse brought her a tray with Jell-O, soup and milk. She consumed only the latter, although with gusto.

We were in our final lap. By the next day, Erin no longer needed an IV. And by the day after that, she no longer needed a hospital.

At last, the ceramic Santas and cookie-dough ornaments came out of the garage. It was a Christmas filled with immeasurable gratitude.

When a child has been seriously ill, parents too must recuperate--and for us, the process is much slower. I often wonder if I will ever again feel that my time with Erin is not borrowed.

But then, I tell myself, childhood is fleeting. Could we ever appreciate too much the time we have with our children?