receiving david

William B. Eerdmans Publishing Company

Contents

preface........................................viiacknowledgments................................ixreceiving david................................1protecting david...............................73letting go.....................................111redefining and remembering.....................147

Chapter One

What is going on here?

Our son David was born on December 14, 1982. He arrived fourteen weeks premature and we were told that he was not expected to live more than a few hours. His vital signs were weak; his eyes were still fused shut. He weighed only one pound, fourteen ounces. So he was simply handed to us, wrapped securely in a soft blanket. It was half past four in the morning.

Filled with love and sorrow, my husband Harry and I gently cradled this tiny boy, our second child. We had been debating names, and as we gazed at him, the name David seemed to fit. Unsettled and unsure of what was going on, we watched his shallow, weak breaths and held him close. He was so tiny, his head no larger than a tennis ball.

A week earlier, I had undergone tests indicating a complication of pregnancy called partial placenta previa. No need for great alarm, I was told, just don't vacuum or lift anything heavy. It was the Christmas season — we had a calendar full of planned events.

Within hours of learning this news, I began premature labor. Harry was away at a meeting the evening of December 7. What I first tried to ignore became an issue to present to him when he walked in the door later that night. A phone call to the doctor directed us to head right to the hospital. The next seven days and nights were spent at the hospital, mostly in the labor room, where I was given strong medications in an attempt to stop the premature labor. But my labor pains prevailed. The medical team gave us little hope for delivering a child who could survive; they tried to prepare us. Mid-December — and our baby was not due until late March — this could not be good.

After his birth, the delivery room nurse checked on us frequently, kindly asking if she should take him. Take him? Take him where? To the newborn nursery, she said, where he might be warmer. Until he dies? I wondered, while Harry thought, until he warms up? It was years before the two of us realized we had conflicting interpretations of that moment.

Time passed, and my nurse, Linda, eventually carried our baby away from us down a brightly lit hallway and watched as his eyes inexplicably fluttered and then opened. In the newborn nursery, Linda noticed his breathing and color improving, as David fought to live.

Meanwhile, wanting to share the news of David's arrival, Harry and I telephoned our parents and pastor. David's outlook was grim, we said. While we had hoped that he would be strong enough to live, all hope was swept away with the doctors' belief that it was not to be so. We wept, exhausted and filled with sadness. Accompanying our sorrow was a sense of regret that, for fear of disturbing him, neither of us had opened the blanket to look at his fingers and toes.

More time passed. Sensing he was stronger than the doctors had believed, Linda called her nursing supervisor. A doctor was called to reassess our baby, and soon one of the staff, bypassing the elevator, raced David up the stairs to the Neonatal Intensive Care Unit (NICU) to seek more help.

Then, shortly, several hospital staff — Linda, the OB doctor, a NICU nurse, and the NICU resident — came to my room to tell Harry and me that David had been rushed to the NICU. They showed us Polaroid pictures taken minutes earlier of David, his eyes wide open. Did we want to see him?

Of course. So they wheeled my bed into the elevator and took us up to the strange, amazing world of the NICU.

Now, as a nurse positioned me next to David's treatment table in the triage room, I looked at him with wonder. He was pink and lying with his eyes open under a hood of oxygen. Seeing him again and hearing he was doing better than expected, I was overjoyed.

Harry, on the other hand, slumped against a wall, horrified. What is going on here? What has been done? Our son's color had been gray and his breathing irregular for quite some time. A special education teacher, Harry recognized the gravity of the situation, understood the damage that can result when oxygen and other assistance are withheld. One of the staff found a chair for him to sit on as he buried his head in his hands.

Long months in the hospital

Given David's fragile condition, it was six weeks before we were able to hold him again. We visited the hospital every day, often twice a day, to caress and talk to him. Struggling to grasp what was happening from day to day, we wrestled with the uncertainty of David's life. Minute by minute things would change. Hopes rose and were dashed. Living hour by hour, we gradually built an emotional armor around ourselves, a shield from fear and grief.

David's stay in the NICU lasted nearly five months, during which time he endured thirteen surgical procedures. He also suffered through infections, liver and intestinal failure, kidney failure, broken bones, unknown neurological damage, and eye damage resulting in blindness. Many nights we did not know whether he would live to the next morning.

In the NICU we became acquainted with several other families who had premature infants. Each baby took his or her own route through the ordeal of prematurity. Witnessing the differences in our various experiences, we were gradually able to understand why the doctors could not give us the concrete predictions we so wanted.

Home, finally

On May 6, 1983, we took David home from the hospital.

Harry and I had been married nearly six years. My first pregnancy had been uneventful, with Jared arriving just a few weeks early, robust and resilient. Jared, who had just turned two, was young enough to enjoy the attention family members and friends provided him while we spent so much time at the hospital with David.

Eager to finally take David home from the hospital, Harry and I were also apprehensive when the responsibility of his demanding care fell to us.

Weeks before David's birth, at a family Thanksgiving gathering, one of Harry's cousins came up to me before leaving and said, "I hope that your pregnancy and delivery go well, Faye." At the time I thought his concern was kind but unnecessary — I was doing fine. But remembering his words later, I realized that no pregnancy could ever be assumed to be routine.

There was much we needed to learn.

home life: the first two years

At home we were presented with new challenges. Since David wasn't strong enough to drink from a bottle, we had learned in the hospital how to place a feeding tube into his nose, leading to his stomach, allowing him to be fed directly.

Along with David's feedings, multiple medications, oxygen use, monitors, and overall fragility, we had the ongoing care of Jared. An energetic delight to us, Jared kept us from being consumed with David's care. We were glad for the distraction he provided.

Though uncertain and often overwhelmed, we did the best we could and learned whatever was necessary to meet David's many needs.

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