Updated: March 11, 2017 | Originally Published: November 12, 2014
My husband, Mark, and I had finished packing our belongings and were standing beside the hospital bed, holding hands, when the pediatrician entered the room. She wasn’t carrying our newborn daughter, and the serious look on her face sent a surge of panic through me. I squeezed Mark’s hand and braced for the news.
“Your daughter began seizing during our examination. We’ve had to admit her to the Neonatal Intensive Care Unit,” she stated.
We froze in disbelief, words escaping us. My mind raced while my heart pounded in my chest. This couldn’t be real. We had dressed her in her special Going Home outfit and were ready to start our new life as parents. We were supposed to bring her home.
“I’m so sorry. I realize this is a shock,” the doctor continued. “We’re conducting comprehensive tests to determine what’s happening. Have you noticed anything unusual?”
I frantically reflected on the days leading up to this moment. Our daughter, Lily, had made a dramatic entrance into the world, born preterm at thirty-six weeks with the umbilical cord wrapped around her neck. Thankfully, the medical team had swiftly resuscitated her. After that initial crisis, she appeared healthy—feeding and sleeping well, weighing in at seven pounds nine ounces. But then, I hesitated, “Her arm was jerking. I mentioned it to the nurse yesterday, and she said it was nothing.”
“Hmm…” The doctor mused. “That may have been another seizure. We need to determine the cause. I’ll return to your daughter now, and someone will be with you shortly to discuss the next steps.”
Instead of taking our baby girl home, Mark and I spent that afternoon navigating the strict protocols of the NICU, following our daughter as doctors and technicians conducted a series of tests, including MRIs and CT scans. We waited anxiously behind closed doors, peering through Plexiglas windows.
Reality hit hard. Our newborn was experiencing recurrent seizures, and no one had answers. What would happen to her? Would she be okay? We clung to each other, praying and trying not to speculate on the tests’ implications.
Since the adjacent overnight facility was full, we had to leave the hospital to find some rest and establish a base. We departed without our daughter—I left my heart in that NICU.
Home was not an option; we needed to stay nearby. We checked into a hotel, enveloped by an unexpected loneliness and despair. I curled up tightly in the hotel bed, a cold ache settling within me. My baby was no longer in my womb, and now she wasn’t in my arms either.
Eventually, the doctors informed us that Lily had suffered a stroke either in utero or after birth. While this explained her premature delivery, it also accounted for the seizure activity. However, the cause of the stroke remained a mystery. More testing was essential, and our daughter had to stay in the NICU.
As I sat in the NICU the following day, I surveyed the room full of medical equipment—the infant warming beds, feeding tubes, IVs, and monitors. Tears welled in my eyes as I observed the other babies, and two overwhelming feelings washed over me:
Fear
Our daughter had suffered a stroke, and the cause was still unknown. How would this affect her future? We didn’t know much about pediatric strokes, but their seriousness was apparent. The doctors were running EKGs, blood tests, and DNA tests while providing her with phototherapy and antibiotics. This was not the joyous homecoming I had envisioned; I was trembling with anxiety.
Guilt
Despite her condition, Lily appeared healthier than many other infants in the NICU. They were smaller, connected to more tubes and monitors. How long would they remain there? What awaited them? My heart ached for their parents. What would their homecomings look like, if they had them at all?
These mixed emotions propelled us as we returned to the hotel for brief naps and showers before heading back to the hospital every three hours to nurse and hold Lily. This was not the typical new parent exhaustion; we drove silently through the night, burdened by fear and hope.
The third day in the NICU brought some relief: Lily was stable, showing no new symptoms or seizures. The doctors had ruled out the most severe causes of the stroke and believed a blood clot was responsible. We realized that only time and ongoing care would show any long-term effects. With the discharge recommendation from the attending neonatologist, we felt a weight lift from our shoulders.
Finally, on a bright sunny morning, we placed Lily in her baby carrier and left the hospital. The click of the car seat ignited a wave of relief and excitement. We had weathered our first major parenting crisis and emerged victorious. As we faced an uncertain future, we were finally bringing our baby home, ready to embrace our new family life.
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Summary
This poignant story recounts the emotional rollercoaster faced by a new mother as her newborn daughter is admitted to the NICU following unexpected seizures. The author shares feelings of fear and guilt as they navigate the uncertainty of their child’s health, ultimately finding hope as they prepare to bring their baby home.