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.

Resuming life

Harry, bringing a special education teacher's perspective, resolved that David should be treated as a part of the family, not the center of it. We should try to live as normal a life as possible. Naturally more cautious, I had a hard time seeing how that could happen, but Harry was serious. Within weeks of David's homecoming, Harry decided we should ask our twelve-year-old neighbor Jill — the oldest of four and a responsible girl — to come over and watch Jared and David so we could go out. "I don't think so!" I said. My good, persistent husband insisted that we needed to get out and that David would be fine if we were gone for only an hour.

"I am going to go," Harry gently insisted, "and I hope you will come with me. We can't let this baby make us feel trapped. We need to find ways to refresh ourselves, even if for only an hour or two." After thinking a few more minutes, I agreed. We called Jill, who was willing to come over (with her very competent mother at home next door), and we left David and Jared in her care for a little over an hour.

Also, soon after David came home, a casual acquaintance began inviting Harry to join him fly-fishing. Not having seen Harry interested in fishing before, I was surprised at how readily he accepted the invitation. Quickly, fly-fishing became a much-loved hobby to pursue with this new friend. Harry encouraged me to find time myself to leave the demands of home while he would care for our sons. I began to nurture my friendships with other women and planned activities, events, and getaways. So, while we did find things we could enjoy together, we also valued discovering separate ways of re-energizing ourselves.

Over the years I realized that these were critical points in our life with David. While watching who David would become, we were determined not to lose our individual selves.

Early therapy

In September 1983, David, now nine months old, began receiving twice-weekly services through the local public school special education diagnostic center. A teacher with visual impairment certification came to our home one morning a week to work with David and me. Anne quickly became a wonderful resource, offering gentle, loving support and direction. She even brought games and books for Jared to enjoy, making him part of the process.

David also received therapy at school one morning a week, and I was required to attend a weekly parent support-group meeting at the same time. This did not appeal to me, so I tried to get out of it, thinking it would be an ideal time to get groceries. "How about I just drop David off for his therapy and pick him up at the end of the session?" I suggested. But the rules were firm: David would not receive assistance if I didn't attend the parent group. So, grudgingly, I consented, not pleased to be sitting in a room full of other parents of children with disabilities and challenges. No time for this, I grumbled.

A psychologist led the group, teaching us about disabilities and providing opportunities for us to share our questions and concerns. How did we feel about the delay or disability our child had? How did I feel about it? Up to that point I hadn't allowed myself to think much about that question — no energy. I had been raised to press on and deal with life; feelings just weren't a high priority.

For well over a year, as David went to therapy, I attended the parent meeting. Gradually it became a welcome, safe place for me. The psychologist slowly wore down my defenses and led me to recognize, acknowledge, and then verbalize the grief and fears I had about David and his future.

I have always looked back at that fragile period as the time I began learning how to deal with David — to grieve the losses he experienced and to generate the strength to move forward.

Medical issues

We had been warned to watch for bowel obstructions, the result of scarring from David's repeated colon blockages and surgeries in the NICU. Instead, we faced two episodes of aspiration pneumonia that required hospitalization during his first year home. During the second bout, in January 1984, we became aware that he had also developed a specific seizure pattern. This condition caused David to lose all responsiveness and forced us to return to tube feedings after five months of bottle-feeding.

When the seizures first developed, Harry and I were already exhausted from David's ongoing care. Now multiple tests would be necessary to assess the seizure pattern. Seeing that I was not emotionally capable of facing yet another ordeal, Harry rearranged his work schedule so he could take David for the testing. This was a lovely gesture toward our marriage, cementing the fact that we were in this together and would support each other throughout. We realized each other's need to balance the care load in order to go on day after day.

While David was in the hospital for treatment of these seizures, we received training in how to administer injections of a medication intended to stimulate brain activity. Once he came home, we continued the injections, but for months David only slept, responding very little. Devastated, we were told that we faced three possible outcomes — David would die soon, remain unresponsive, or respond to the medication, though with possible new damage to the brain.

Gradually he did begin to respond. Over time he again learned to drink from a bottle. Later we introduced pureed food by spoon — but for years David would not chew. Waiting for him to swallow was enormously frustrating, so Harry and I developed a system: We'd put a spoonful of food in David's mouth and then step away, glancing periodically to see whether he had swallowed. It was often five, ten, fifteen minutes, or more, between each bite.

Eventually David grew stronger — but it was wearing on the rest of us. Patience is a virtue neither Harry or I had been naturally blessed with.

Legal questions

After David's first birthday we decided to seek legal advice on the circumstances surrounding his birth. The inevitable questions kept coming up. What could have been done differently at the time of David's birth? Was there mismanagement or negligence? The long period when he was breathing irregularly without assistance deprived him of oxygen, affecting several vital organs. A thorough investigation revealed that we did have legal avenues to pursue. Yet our attorney warned us that if we were to proceed, this could become a very public matter. Were we prepared for that?

After careful, prayerful consideration of the legal — and human — questions, Harry and I decided that this was the child we had prayed for and asked for; who were we to question the child we had been given, and under what circumstances? A peace enveloped both of us. We decided to put the legal process to rest and proceed with life as it evolved.

David's eye trouble

During his stay in the NICU, David's eyes had been checked periodically. We knew that eye damage could occur in premature infants, but since his initial eye checks looked okay and he was facing so many episodes that were life threatening, we did not devote much energy to this concern. That changed one Saturday morning in April 1983, about a month before we brought David home from the hospital.

Harry was at work and I was home with Jared. The telephone rang. It was an ophthalmologist, who had just checked David's eyes. Concerns he had noted earlier had developed into serious problems, he said. David's vision would be greatly impaired owing to a condition called retrolental fibroplasia. (Years later it became known as retinopathy of prematurity.) He told me about an ophthalmologist on the other side of the state who was having limited success reattaching the retinas of extremely premature infants.

Distraught and apprehensive, I questioned him extensively. After hanging up, I paced around the house, overwhelmed and frightened by this new complication, one more concern added to the many we already had about David's health and future.

Minutes later the phone rang again. I thought about not answering it, but then did. It was my friend Flori calling from her home in California to see how I was doing. How was I doing? Deciding I couldn't share the news I had just received — it was more than I could handle — I talked in general of how David was faring in the NICU. The love, concern, and compassion she provided from miles away calmed me down.

Feeling comforted by a longtime friend, I paused to wonder at the timing of her call. Perhaps we were not meandering aimlessly, even though things seemed out of control.

The ophthalmologist said David's eyes should be further assessed as soon as possible. So after David had recovered somewhat from his latest intestinal surgery, we arranged to drive him across the state for a consultation and possible surgery. We loaded David into the car with his feeding tubes, monitors, medications, and everything we would need for a few days' stay. A NICU nurse accompanied us on the 150-mile trip.

The ophthalmologist there agreed that David needed surgery but would not operate because, he said, David had a slight fever. We returned to the NICU the same day, frustrated and disappointed. More frustration followed when we returned for eye surgery a month later and learned that David's eyes had greatly deteriorated since our April visit.

Still, we decided to return there and go ahead with several eye surgeries, once David had been discharged from the NICU, to see if his retinas could be reattached.

(Continues...)

Excerpted from receiving davidby faye knol Copyright © 2010 by Faye Knol. Excerpted by permission of William B. Eerdmans Publishing Company. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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