When you have a premature baby in the Neonatal Intensive Care Unit (NICU), the nurses warn you that it will be a roller coaster ride. What they don’t say is that the roller coaster is not measured by weekly ups and downs or daily ups and downs but hourly, sometimes minute-by-minute, swings. A 9:30 a.m. visit with your baby where the primary care nurse speaks glowingly of your child’s progress can veer to a crisis requiring emergency surgery by 10:00 a.m. Sometimes that roller coaster goes down, and you never come back up. Sometimes you fall off.
My husband’s and my journey into parenthood began in the early 1980s with a miscarriage. Two years and a cross-country move later, we ventured into the NICU when a second pregnancy ended at twenty-four weeks after I developed HELLP syndrome, a severe form of preeclampsia that often results in the death of the mother and the child. In a desperate attempt to save both of our lives, our son Nathan was delivered by an emergency Cesarean section and raced to the NICU. At barely 1.5 lbs., Nathan Scott was a micro-preemie who had been badly damaged by the complications of my illness. He died in the NICU three and one half days later.
Psychologists consider the death of one’s child as one of the worst stresses in life. Compassionate Friends, the international support group for those who have lost a child of any age, says its members belong to an exclusive club no one wants to join. Grief can derail you, and it manifests itself in many ways, including anger. Grief can make you angry at God, angry at the doctors who failed your child, angry at fate, at injustice, at oneself, at your partner, and even at your dead child. That anger can be consuming, burning like a raging fire; but mysteriously, it can also be sustaining, propelling us through the worst of the pain.
My grief gave me purpose, a reason to fight back. I wanted to try another pregnancy.
My husband was fearful. He had lost his son and nearly his wife. “Are you sure about this?” he asked. My OB/GYN was cautious: “You almost died. I understand your desire, but I advise against it.” My internist, the doctor who brought me back from the brink after delivery, was more blunt: “Are you crazy? No, don’t do this.”
No, I was not crazy. I believe in trusting my instincts, and my instincts told me another pregnancy would have a different outcome. My doctors reluctantly agreed to let us try again–as long as I accepted the hard truth that this pregnancy carried tremendous risk. In late 1987, I became pregnant a third time.
It would be lovely to say this third pregnancy was uneventful, but that was not the case. At first, things seemed to go smoothly, but during the second trimester, an ultrasound revealed the baby was not growing or gaining weight. Additional tests showed that my placenta was shutting down for reasons unknown. Our daughter was fine, but for how long? One specialist gave us two more weeks before we would face another emergency C-section, this time to save the baby’s life. I was not in danger. Ten days later, I was admitted to the hospital, and we began counting the days. Each extra day gave our unborn child a better chance of survival.
Those final two days before Vanessa’s birth were a blur of weight-checks and monitoring; night and day crossed into a continuum, as I was awakened at odd hours to evaluate the baby’s progress with more tests and ultrasounds. But the time I remember most vividly is the morning of our daughter’s delivery.
I was clinging to sleep, fighting off the terror of another loss, when I was struck by a powerful vision: In it, I am lying peacefully in a small, lotus-flower boat with my baby daughter asleep in my arms. We are floating, drifting on a mountain lake so clear I can see the reflection of snowcapped peaks rising up to a startling blue sky. Below us, beneath the surface of the water, two cupped hands support our boat and guide us gently forward. Peace, such perfect peace, and from a far distance, a deep voice says, “Don’t worry. It will be okay.”
I opened my eyes to see our priest standing next to my hospital bed. “Would you like to say a prayer before you go into surgery?”
I nodded. Our daughter, Vanessa Marie, weighing only 12.7 ounces and almost fifteen weeks premature, was about to be born.
Vanessa was the most micro of all living micro-preemies at the time. No infant that small had survived delivery. Imagine a footprint the size of your fingerprint. Imagine a baby no larger than your own hand. Imagine a child who weighed less than a 2-liter bottle of soda. This was Vanessa.
But she was not small in spirit. In the NICU, her nurses talked about Vanessa’s powerful presence. Her neonatologist said she had touched his soul. If anything could make him believe in heaven, it was this tiny baby. Later, Vanessa’s care and treatment would lead to innovations that would save the lives of future micro-preemies. My husband and I felt honored to parent a child who touched so many people. She had a huge voice in a minute body.
The “Voice,” as I thought of it, also became a form of telepathic communication with our daughter. I first heard the Voice in that vision before Vanessa was born and then several times thereafter. It alerted me to come immediately to NICU. Once I arrived, the crisis was quickly resolved. I trusted the Voice would continue to warn me if Vanessa was in danger, and I was convinced that the words, “It will be okay,” meant Vanessa would survive. Together, with my husband, our team of nurses and doctors, and the Voice, we would bring Vanessa successfully through the rigors of her projected four-to-six-month hospital stay. But I had to learn there was more than one definition of “okay.”
Vanessa was 41 days old when the Voice woke me at 3:50 a.m. with the words: “You need to be there.” Seconds later, the phone rang. It was a nurse at the NICU. “Mrs. Gassman, Vanessa is critical. You have to come.”
“Is she dying?” It was the first time I had ever asked that question, but I already knew the answer. My husband and I threw on our clothes and raced to the hospital.
During the long day that followed, we tried to convince ourselves this was another temporary setback, but Vanessa showed no improvement and continued to decline. Her doctor suggested we try an experimental ventilator, known as an oscillator, a device that would force her lungs to take in more oxygen. Over dinner that evening, my husband offered words of encouragement. He believed the oscillator would work its magic. I wanted to believe, but I couldn’t. The Voice had gone silent.
That night, we stayed in the hospice room at the hospital. While my husband slept, I prowled the halls and threw up in the bathroom. I entered the chapel and tried to pray. I waited for the Voice to tell me it would be okay. Silence.
Grief is isolation. Some define hell as the absence of God. For me that night, hell was the knowledge that my child was dying, and I could do nothing to stop it.
Shortly after sunrise, I summoned the strength to enter the NICU alone. Vanessa lay in an open layette attached to a tangled net of tubes and wires. The oscillator rattled her entire body. I stroked Vanessa’s trembling hand and whispered, “Sweetheart, mommy is here.” Her eyelids fluttered, and her nostrils flared. “Look,” I told the respiratory therapist, “she’s trying to breathe on her own.”
He shook his head. “She needs to let the machines do the work now.”
There was no change throughout the morning, so the doctors sent us home to rest. For the first time in two days, my husband and I slept in our own bed, collapsing into an exhausted sleep. I sank into grateful oblivion. Then the Voice spoke: “Go now. It’s time.” I woke my husband, we called our priest, and left again for the hospital.
Vanessa died in our arms two hours later.
Life does not stop when we lose those we love. We move forward, sometimes sluggishly, attending to the demands placed upon us. We anticipate the hard anniversaries and try to race past them. When the anniversary of Vanessa’s conception arrived, my husband and I took a trip to a mountain resort town in Colorado. For a few days, we hoped to escape the memories with long walks along a river and hearty meals in noisy restaurants filled with friendly people. At breakfast, on the final morning of our trip as my husband paid the check, the Voice spoke to me for the last time: “You will be happy again.” Smiling, I accepted the gift.
But what is happiness? Another child, a successful pregnancy? There would be no more pregnancies after Vanessa because a tubal ligation had ended that choice. We did still hope for a family and had applied to adopt but had been told the wait could take at least two years. Then, almost exactly nine months after Vanessa’s death, we received a phone call.
We were out of town, attending the funeral of K., a dear friend who had died from AIDS. K’s greatest wish was for Vanessa to live and thrive. Her valiant struggle had inspired him as he fought his own health battles.
Our adoption agency had found a baby for us, a little girl we named Genevieve. Born just minutes before K. died, she was 11 weeks premature.
>>Related: Healing after a Premature Birth: Meet Monica Parran
We are not defined by one singular event but by the chain of circumstances that shape us. Genevieve’s birth and adoption brought us back to the NICU where our journey began with Nathan, followed by Vanessa. The nurses and doctors who had cared for our first two birth children were assigned to our adopted child. Weighing in at 2 lbs., 15 1/2 oz., Genevieve was a remarkably healthy preemie, so strong she was never intubated and was released six weeks before her actual due date. Our NICU reunion was filled with joy and hope.
Our experience with Genevieve was so wonderful that we applied to adopt a second child, again assuming we would have a two-year wait. But while we were on vacation in Yellowstone, WY, we received a call from the adoption agency about a little boy whose mother had requested a home like ours. (If you are on an adoption waiting list, think about going on vacation! It could speed up the process!) A few months later, we enlarged our family with the adoption of our son, Gregory, who was born one year to the day of Genevieve’s actual due date.
Today, our children are happy and healthy adults. My husband and I think of ourselves as the parents of five children: two surviving, two deceased, and one unable to be born. Each child, each experience of parenthood, no matter how brief, has enriched our lives. Vanessa’s Voice carried me through a turbulent, painful period and offered a single promise: “You will be happy again.”
And I am.
Jeanne Lyet Gassman holds an MFA in Writing from Vermont College of Fine Arts and resides in Arizona. Her debut novel, Blood of a Stone (Tuscany Press), received a 2015 Independent Publisher Book Award (bronze) in the national category of religious fiction and was a finalist for the New Mexico-Arizona Book Awards and the 2015 Independent Author Network Book of the Year Award. Her short work has been nominated for Best Small Fictions 2015 and the Pushcart Prize. Jeanne’s short stories and creative nonfiction have appeared in Hippocampus Magazine, Run to the Roundhouse, Nellie, Hermeneutic Chaos Literary Journal, Red Savina Review,and The Museum of Americana, among many others. Visit Jeanne at her website: jeannelyetgassman.com
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I can’t imagine going through this and coming out stronger than ever like you. It’s nice that you have the support of your hubby too. A mom never gives up and it’s nice to see someone so strong willed. Thanks for sharing your story. You are truly admirable.
Thanks for stopping by. It is in times like this that community is more important than ever. She is profoundly admirable.
Reading this, my heart ached and was also joyful for you. Beautiful writing.
“Life does not stop when we lose those we love.” <<< so true.
This is so beautiful and got me thinking too!
This is an eloquent essay about the hopes, dreams, and crushing disappointments of infant death. Writers are often told “go where the pain is.” From that pain, Jeanne Lyet Gassman reveals the enduring truths of a mother’s love.