My husband and I had gathered our belongings and were holding hands beside the hospital bed when the pediatrician returned from the discharge examination…without our newborn daughter. The serious look on her face triggered an overwhelming wave of panic within me. I gripped my husband’s hand tighter, bracing for what she was about to say.
“Your daughter began seizing during our examination. We need to admit her to the Neonatal Intensive Care Unit,” she stated solemnly.
We stood frozen, unable to speak. My mind raced, my heart pounded, and my breath quickened. This couldn’t be real. We had dressed our daughter in her special Going Home outfit and were ready to embark on our new life as a family.
The doctor approached us gently. “I’m truly sorry. I realize this is completely unexpected. We are conducting all necessary tests to determine the cause. Have you noticed anything unusual?”
As I replayed the past few days, I remembered how our daughter had made a dramatic entrance into the world, arriving three-and-a-half weeks early. She was born with the umbilical cord wrapped around her neck and had required immediate resuscitation, but after that initial crisis, she had appeared healthy. She was eating well, sleeping soundly, and weighed seven pounds nine ounces—a good weight for a newborn.
But then I stammered, “Her arm was jerking. I mentioned it to the nurse yesterday, and she said it was nothing.”
The doctor nodded thoughtfully. “That could have been another seizure. It’s critical that we find out why this is happening. I’ll return to your daughter now, and someone will discuss the next steps with you shortly.”
Instead of bringing our baby home, my husband and I spent the afternoon navigating the strict protocols of the NICU, following our daughter as medical professionals conducted a series of tests including MRIs and CT scans. We waited anxiously behind closed doors, peering through Plexiglas windows.
The reality of our situation began to settle in. Our newborn was experiencing recurrent seizures, and no one could tell us why. What lay ahead for her? Would she be okay? We tried not to dwell on the possibilities as we held each other tightly and prayed.
With the overnight facility adjacent to the NICU fully booked, we were forced to leave the hospital to find some semblance of rest and establish a base of operations. Leaving without our daughter felt like leaving a piece of my heart behind.
We checked into a nearby hotel, grappling with a profound sense of loneliness and despair. I curled up in the hotel bed, my body aching with a cold heaviness, my trembling hands resting on my empty stomach. My baby was no longer inside of me, and she wasn’t in my arms either.
Eventually, the doctors diagnosed our daughter with a stroke that likely occurred either in utero or shortly after birth. This stroke could explain her premature arrival and was certainly the reason for her seizures. However, the underlying cause of the stroke remained a mystery, necessitating further testing. Our daughter would need to stay in the NICU, and we couldn’t take her home yet.
The next day in the NICU, I looked around at the various medical devices: the incubators, feeding tubes, IVs, and monitors. As tears filled my eyes, I observed the other infants in the room and felt two conflicting emotions:
Fear
Our daughter had suffered a stroke, and we were still unaware of its cause. How would this affect her future? Although we had little knowledge about pediatric strokes, we understood their seriousness. The medical team was running EKGs, blood tests, and providing her with phototherapy and antibiotics. This was not the homecoming I had envisioned, and my body quaked from an unshakable anxiety.
Guilt
Despite her stroke, our daughter appeared healthier than many of the other babies in the NICU. They were smaller, with more tubes and wires connected to them. How long would they remain there? Weeks? Months? What awaited their families? How were they coping? Would they ever get to take their babies home?
These contrasting feelings propelled us as we returned to the hotel for brief respites before heading back to the hospital every three hours to nurse and hold our baby. This was a far cry from the typical exhaustion of new parents; we could not simply walk down the hall to feed her. Instead, we drove silently through the night, filled with uncertainty but hoping for the best.
Those days in the NICU were some of the most harrowing of our lives.
On the third day, we received encouraging news: our daughter was stable. There were no new symptoms or seizures, and the doctors had ruled out the most severe causes of the stroke. They believed a blood clot might have been the culprit. At that moment, we felt a sense of relief wash over us as the attending neonatologist recommended discharge. Our fears and guilt began to ease.
On a bright and sunny morning, we finally placed our daughter into her car seat, ready to leave the hospital. The sound of the car seat clicking into place brought a wave of relief and joy. We had faced one of the first many heart-stopping moments of parenthood and had emerged stronger. As we looked toward an uncertain future, we were finally able to take our baby home. We were becoming a family, and for the first time in days, we felt that everything would be alright.
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Summary
This article recounts the emotional journey of a couple whose newborn daughter experiences a seizure during her discharge examination, leading to her admission to the Neonatal Intensive Care Unit (NICU). As they navigate the uncertainty of her condition, they confront fear and guilt while waiting for answers. Ultimately, they receive hopeful news and are able to take their daughter home, marking a significant moment in their new life as a family.
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