Entering the newborn intensive care unit at the University of Utah Medical Center to visit my new granddaughter for the first time left me thinking that entrance to Fort Knox might be easier. She was four days old when first I saw her. Her twin sister, Abbie Rose, had not survived her birth.
I had no idea what a NICU was or what to expect there. I had witnessed the delivery of four of my own children, but I was completely ignorant of the term “23 weeker.” With my children, I simply walked into the maternity ward and held them in my arms, smiled, accepted my father’s honors and took them and their mother home.
“First time in the NICU?” the desk attendant asked. I surveyed the heavy security door leading into the nursery.
“Yes.”
“Who are you here to visit?” she continued, pulling out a clipboard.
She handed it to me, a lengthy list attached. Before entering, I was required to check in with a charge nurse and check off a litany of preparatory procedures before I was allowed inside the sterile environment my granddaughter called home.
My thoughts raced. Would I be allowed to hold her? Would she be awake? What would her smile be like? What color her eyes? Had I understood the realities of an ultra preemie, these questions would have been ridiculous.
“Annie Mae Hixson,” I responded. And so the process of admittance began. Not until I had answered enough questions to constitute a physical exam, scrubbed until my skin was tender and gowned, and was masked and gloved was I allowed to enter.
The enormity of my ignorance took my breath away as my imaginings became reality. I knew Annie Mae's condition was critical, though I wasn’t sure what that meant for a newborn 13 inches long and weighing 1 pound, 3 ounces. I reminded myself that my daughter would be searching my face for reactions, and that a look of panic would not be a good thing in her already tender emotional condition. She met me at the entrance to Annie Mae's wing. The look in her weary eyes and the gentle squeeze of her hand as she led me to the inner sanctum telegraphed her stress to my heart.
“Thank you for coming,” she said quietly.
“Glad to be here,” I whispered, though I wasn’t sure it was the truth.
I steeled myself as we approached the incubator for my first view of Annie Mae. Even before we reached her enclosure, the images around me and the thoughts peppering my brain left me speechless. As I surveyed the micro world of the babies around us, one overriding conclusion pounded at my heart: “This is impossible!”
All preconceived notions were laid waste in one glance. I could only imagine what shock, terror and anxiety had flooded over Annie Mae's parents in the last four days. Yet to be faced was the cold fact that her sister Abbie Rose's funeral was still waiting.
My initial questions were answered faster than my eyes and mind could process them.
No, I obviously could not hold her, though at 19 ounces, she would have easily fit in the palm of my hand. I was actually grateful. The thought terrified me. I had never seen a baby with transparent skin. Skin is supposed to cover up stuff not meant to be seen. Not so for Annie Mae.
Her fragile eyes were covered with patches, although beneath the patches they were sealed tight anyway. What color? No one would know for the indefinite future.
Her smile was penetrated with tubes for nutrition and oxygen and I didn’t know what else, but it wouldn’t be seen that day or any other for a long time.
She was not awake during my visit. Medication to keep her calm in the presence of constant unbearable pain flowed through an almost microscopic IV needle in the back of her hand and prevented hope to hear a sweet newborn cry. Holding my hand up to the glass of her incubator, I realized that not one of her delicate tiny fingers would reach around one of my own. “Impossible,” I thought again.
I don’t believe the uninitiated person can grasp the hairpin turn which looms instantly in life’s path for a family thrown into the world of prematurity. After the first shock wave comes the day-to-day battle between life and death, with sleepless days and nights and recriminating guilt, even when it is misplaced.
As the initial impact wanes, the specter of the future and the black hole of uncertainty press in. Postpartum moves on, but there is no time or energy to accommodate it, good or bad.
The stark reality is that there is no guarantee that the future will ever be certain or even that if there will be a pattern of normalcy. I have learned that with the help of incredibly gifted and dedicated professionals, the improbable happens every day and “impossible” just takes a little time. That, however, is more faith than assurance.
As a family, we have seen miracles, some too tender to share. We have also weathered dark nights wishing we could remove the pain from our children and their children, yet knowing there is little we could do but wait and pray.
In time, the shock wears away. In order to cope, parents of micro-preemies learn to enjoy very small victories and hope for happy ever after. The events of daily life-and-death struggle tend to make families appreciate shining moments. Racing headlong into the future dreaming about first steps or first dates seems pretty aggressive when life hangs from IVs, heart monitors and confusing medical terminology. Blessings are counted a little differently. No day is taken for granted.
As a grandparent, a step removed from the ever-present demands and challenges of prematurity, I have perhaps been able to more objectively observe the stresses endured by siblings.
Lacking adult understanding, Annie Mae's sister Emma has had to deal with a fearful uncertainty about emergencies, trauma and life or death decisions at an age when most children are wrapped in a cocoon of complete narcissism. It is unfair, but it has brought out strengths which other children take years to discover. There are also wounds which, in time, will hopefully heal.
Annie Mae's little brother Ryan has become the friend, protector and competition which often restores the innocence stolen from Annie Mae at her birth. As years pass, and the unforgiving world around Annie Mae becomes inured to and less understanding of the conditions of Annie Mae's birth, it seems likely that Ryan will also become her defender and champion. Right now, she is his.
Annie Mae is now 11 years old. Her years have been some of the most amazing of our lives. Though she must fight her own battles in the quest for her place in life, her daily challenges and victories are inseparably connected to the strings of my heart. I weep for her pain and some of the bright prospects she will never realize. I also rejoice in the exquisite joy of her passion and the disarming depth of her simple faith.
Her smile makes me laugh and cry and hope for all things possible and a few that are not. My understanding of and compassion for those who will follow in her footsteps and who will benefit from her experiences are broadened each day that she lives. We don’t know how many she will have, but these days cherished.
The commitment of parents of premature children is worthy of our deepest respect and support. Organizations such as Parent to Parent, a nonprofit, volunteer support group, and the March of Dimes do much to buffer the hard edges of life on the brink of disaster.
I accept that we might lose Annie Mae's vibrant presence at any time, for reasons I may never understand. Infections, surgical procedures and emergency room visits take an unknown toll. I am resigned that I may receive an anguished phone call for assistance and support from anxious parents as they endure yet another unexpected and unwanted trial. I know that the cost, both financially and emotionally, that allows us to share Annie Mae's life has been enormous.
Still, would I trade the distractions, disappointments and setbacks for an easier life devoid of one who loves without question, who smiles even when her eyes are filled with tears and who fears nothing? It would be unthinkable.
There is nothing in Fort Knox as valuable as Annie Mae's smile.
An unabashed fan of outdoor humorist Patrick F. McManus, Ed Smith is a freelance writer, golfer and flyfisherman. He resides in West Bountiful with the love of his life, Ann. Ed can be contacted at efsmithwrites@gmail.com.