Sarah and James
Our journey into the world of the NICU began 18 years ago as we welcomed our first child into our family. From that eventful day in February of 1993 until present, we have been a part of ten different NICU facilities, welcoming into our family seven daughters and one delightful little boy.
Jenna was born on February 8, 1993 at 28 weeks, after weeks of unexplained preterm labor. She weighed three pounds, five ounces, and to me, she was the most beautiful sight I had ever the privilege to gaze upon. My first glimpse was fleeting as half a dozen medical personnel rushed her past me into the adjoining room, promptly hooking her up to hundreds of pounds of machinery. It took me nearly an hour to gather the courage to disregard the nursing staff that had been trying to prevent me from entering the NICU, afraid, I suppose, that I would not be able to mentally handle the sight that I was about to walk in upon.
There she was, our tiny miracle, hardly visible for all the equipment needed to keep her alive. We stood in the corner of the NICU for close to 20 minutes before anyone noticed “baby Cluff’s parents” had entered. I stood there, feeling the unbearable ache and longing to reach out and comfort this beautiful little creature that had been wrenched away from me far too soon. I was scared and emotional, and I felt lonely and alone in such a sterile, medical environment.
I was surprised at how seldom I would see other parents at their baby’s bedside, but as the days passed I began to understand why. I was made to feel superfluous and uninvited. I consistently felt like an obstacle in the way of the nurses. Often I would be told that there was nothing I could do for my baby and I should get some rest. Well-meaning people would even suggest that I “take advantage” of the situation and go back to work while I had the best babysitters in the world caring for my infant. It seemed that at every moment, there were “professionals” trying to convince me that I was not needed yet, and should return in a few weeks when I was. Decisions were routinely made without regard to my opinion, or even the slightest explanation about why different procedures were being carried out. Asking questions would inevitably bring about patronizing answers, hastily and loftily given. The more unwelcome I began to feel, the more determined I was to spend every possible moment at our daughter’s bedside, commonly staying 16 to 18 hours a day.
Two days into our journey, one nurse finally asked me what we had decided to name our daughter. At that moment, I was consumed with intense incredulity. How could anyone look upon these beautiful miracles and not think of them as babies with names and families? It was a harsh concept to grasp that, to the majority of the NICU staff, our Jenna would be only “baby Cluff — girl,” just one of the nondescript infants passing through the nursery. By the end of the third day, I had been allowed to hold my daughter only one time, for a total of 15 minutes; her daddy, James, had not yet enjoyed this privilege at all. Needing to feel actively engaged, I would place my hand in the hole on the side of the incubator as often as possible, and without fail, be reprimanded by a nurse for doing so.
Every moment that followed for the next five weeks was a journey of indescribable pain, joy, love, heartache, frustration, and ultimately, confidence. Confidence because of one extraordinary nurse who gave us the priceless gift of education. She took us on a journey from young newlyweds to parents.
On the fourth day of Jenna’s NICU stay, we met gretchen Lawhon, a nurse working on her research to earn her PhD. gretchen quietly watched us for a few minutes as we began our daily routine of scrubbing, gowning, and sitting beside our daughter. I will never forget the first thing gretchen ever said to us. She said, “Jenna is beautiful. Will you tell me about your daughter?” That was the first moment I felt like a mother. gretchen had not only spoken of our daughter by name, but had actually ASKED me about her! Over the ensuing weeks, gretchen taught us how to understand our baby, how to read the subtle signs that Jenna was giving us so we could better communicate with her and meet her needs. We were encouraged to watch our baby, not the monitors. We began to be more assertive with the hospital staff, persistent about receiving explanations and in-depth answers to all our many questions. We began to have the confidence to demand that we be included in the primary care of our daughter. gretchen taught us how to properly care for our new little daughter, and this support has continued to bless our lives with every addition to our family.
Our third baby daughter Abigail, born at 35 weeks was a very healthy seven pounds, three ounces but presented us with an entirely different set of circumstances. For reasons unknown, she was crashing fast. Again we were shuttled up to the major hospital over two hours away where her needs could be cared for. In the 18 months since we had seen it, the unit had been completely overhauled and remodeled. It was an entirely different NICU from the one we previously endured. Upon arrival, we were met by a team of care providers whose specific intent was to educate us about the NICU. We were offered an empty patient room just down the hall and told it would be at our disposal as long as the hospital didn’t need the bed for a patient. Arrangements were again made to care for our daughters at home, and again, the familiar routine of caring for an infant with special needs began.
At such a healthy size and relative healthy gestation, the cause of the crisis was not premature lungs, or inability to maintain body heat. There was no concern for typical preterm presentation of apnea or bradycardia. We faced a reality that no specialist or professional of any kind was able to discover the cause of her rapid decline. She suffered a cardio respiratory arrest and was intubated. As the hours passed, seizures became commonplace and each would leave physical indents in her muscles with the slightest touch. She had no reflexes and the results of an EEG showed no activity. We were invited into a quiet room where we were confronted with the cold sober faces of half a dozen medical professionals prepared to methodically explain that our daughter was going to die. This snapshot is seared forever into memory, never to fade. The excruciating decision was made that life support would need to be terminated.
We left that room dazed and in shock, but not numb. Anything but numb. Ironically, it was at this moment I absorbed some of the many changes that had occurred in the NICU. Several parents were sitting bedside to their tiny infants. One mother was looking at a chart, another talking to a doctor. There were three fathers in the room that day, two of them seemingly there to give the mothers a much needed moment to rest, shower or eat. In every direction, people were holding, cuddling, feeding, or otherwise attending to miraculous life in the form of miracle babies. One family was completing the necessary tests and paperwork to discharge their son. The boy’s mother briefly looked in my eyes before turning away, unable to face the pain emanating from my very soul. I found myself hungry to sit by my daughter’s bedside, eager to again be the obstruction in the NICU interfering with conventional routine. Did I really, just hours ago, anticipate with horror the weeks I might have spent here? We insisted on an exception to the “no children allowed” so we could bring Jenna and Mckinlei to the bedside of their sister the next morning and for one brief moment, allow our family to be together and whole.
That night, amidst bouts of tears and unsuccessful attempts at sleep, we received a phone call that would change the path we were about to walk. It was about 2:30 in the morning and on the other end of the phone was an unfamiliar voice. My first excruciating thought was that it was too late, that our daughter had already passed away. Unexpectedly, I was greeted by the wonderful British accent belonging to a doctor by the name of Niel R. Buist announcing the possibility that the source of Abby’s overwhelming sepsis may have been discovered and was possibly treatable. He asked our permission to begin treatment. We were told that there was great probability that Abby’s brain was merely paralyzed due to a toxic amount of ammonia in her blood. We rushed to the hospital with our children where we were educated about the extremely rare diagnostic possibility of THAN — transient hyperammonemia of the newborn. We were informed that the ammonia level in our seven pound daughter’s body was well over 1000. We learned that when an adult has a level of around 60, coma is likely. Dr. Buist theorized that if we could wash the blood of ammonia through dialysis, perhaps her brain would be able to wake up. This course of treatment was started immediately.
This phenomenal man, instructed the nurses to allow our children to see their baby sister and make arrangements for us to have a room at the nearby Ronald McDonald House. For the next 16 days, I rarely left Abby’s bedside. Never once did someone reprimand me for touching her too much. I was encouraged to ask questions and told that if there was anything I did not understand they would answer, find the answer or arrange to have the doctor come and answer any question I had. We were even encouraged to be available when the doctors met each morning to discuss care and treatment during “rounds”. Never once was I made to feel like an obstruction, but rather, a vital member of the team whose entire purpose was to heal a devastating illness and allow our daughter to come home.
I was never denied audience with Dr. Buist and had the opportunity to discuss with him the different NICU experiences we had survived. He said he was familiar with the NIDCAP approach. He cited statistics about Kangaroo care, parental involvement, and shortened hospital stays as well as decreased re-admittance rates. He shared with me one of the most profound statements that I continue to remind myself to this day, and which would become particularly useful in years to come as we welcomed more children into this world. He said, “The practice of medicine is just that, it is PRACTICE, and it is ultimately your decision to allow medical professionals to practice on your child.
Abby was discharged after 16 days of intensive care and an additional day in the special care nursery where I was encouraged to room in with and completely care for my bundle of joy. James and I administered all the necessary procedures and medications that would be needed at home. We felt triumphant and confident caring for our baby; quite in contrast to prior experiences, where the predominant feeling of elation at discharge was matched by insecurity about our abilities. Oftentimes, making appropriate care decisions; interpreting preterm infant behavior; and attempting to understand the best way to protect and encourage bonding, development and support felt ambiguous at best. Today, Abigail is a healthy 15 year old who excels in school.
The NIDCAP approach to care has provided parents the priceless gift of confidence and determination, supporting them in their appropriate role as parents despite the daunting circumstances that may lie ahead of them. NIDCAP certified professionals and nurseries have gradually helped to change hospital nurseries around the world. Health care professionals and medical facilities have steadily come to a more complete understanding of the undeniable positive outcomes of individualized, developmental, relationship-based care…a portal to
Over the years as our family has continued to grow, we have experienced the NICU with the birth of each of our other six children. Each birth has presented its own special challenges, but we also became aware of the gradual changes in the nursery, and the care provided, that has taken place over the course of the last 18 years. The NICU can be a place that annihilates parents causing indefinable harm to families. With every subsequent NICU we have been a part of over the last 18 years, changes are evident regarding preterm behavioral understanding and support for both the families and the babies.
It has been almost a year now since I had the awe inspiring experience of seeing my darling Jenna cradle her tiny baby brother in her gentle arms as we sat in the NICU in April. Tears fell unrestrained as I was overcome with the realization that my beautiful daughter possessed all the confidence that had been initially ripped from me in those first few days after her birth. It will be a miraculous day when the norm is supporting parents and giving them the gift of confidence to care for these precious miracles born too early. I am of the opinion that the NIDCAP philosophy of caregiving quite possibly could prevent scenarios of child abuse, failure to bond, failure to thrive, and other such catastrophic events that have an irreversible negative impact on families. I am indescribably grateful for the blessing that NIDCAP has bestowed upon nearly two generations of our family.