After packing our belongings, my husband and I stood beside the hospital bed, fingers intertwined, eagerly awaiting the discharge exam for our newborn daughter. When the pediatrician returned, her somber expression filled me with dread. I tightened my grip on my husband’s hand, bracing myself for what came next.
“Your daughter began seizing during the examination. We’ve admitted her to the Neonatal Intensive Care Unit,” she said gravely.
For a moment, time stood still. My mind raced, heart pounded, and breath quickened. This couldn’t be real. We had dressed our little girl in her adorable Going Home outfit, ready to embark on our journey as a family. The anticipation was palpable, only to be shattered in an instant.
The doctor continued, “I apologize for the unexpected news. We’re conducting tests to determine what’s happening. Have you noticed anything unusual?”
I searched my memory. Our baby had made quite the entrance into the world, arriving three and a half weeks early with the cord wrapped around her neck and requiring immediate resuscitation. However, after that initial scare, she appeared healthy, feeding and sleeping well. Weighing seven pounds nine ounces, she seemed perfectly fine. Yet, I hesitated, recalling moments from the previous days. “She was jerking. I spoke with the nurse about it yesterday, and she reassured me it was nothing.”
“Hmm…” the doctor pondered. “That could have been another seizure. We must find out why this is happening. I’ll return to your daughter now, and someone will be with you shortly to discuss the next steps.”
Instead of heading home with our baby girl, my husband and I suddenly found ourselves navigating NICU protocols, following our daughter through the hospital as doctors ran an array of tests, including MRIs and CT scans. We waited anxiously behind closed doors, peering through Plexiglas windows.
The reality of the situation began to settle in. Our newborn was experiencing recurrent seizures, and no one could explain why. What would happen to her? Would she be okay? We tried to avoid speculating about the results, instead holding each other tightly and praying for her safety.
With the overnight facility next to the NICU full, we had to leave, seeking rest and a base of operations. Leaving the hospital without our daughter felt unbearable—I left my heart in that NICU.
We checked into a nearby hotel, overwhelmed by a profound loneliness and despair. I curled up on the hotel bed, a chill settling in my body as I rubbed my empty stomach. My baby was no longer inside me, nor was she in my arms.
Ultimately, the doctors concluded that our daughter had suffered a stroke, either before or after birth. This explained her premature arrival and the seizure activity that followed. However, the cause of the stroke remained a mystery, necessitating further tests. Our daughter had to remain in the NICU, and the prospect of bringing her home felt distant.
As I sat in the NICU the following day, I surveyed the array of medical equipment: warming beds, feeding tubes, IVs, and monitors. Tears welled in my eyes as I glanced at the other babies, and two emotions washed over me:
Fear
Our daughter had suffered a stroke, and the reason was still unknown. How would this affect her future? We had little knowledge of pediatric strokes, but we understood the seriousness of the situation. The doctors were conducting EKGs, blood and DNA tests, and providing phototherapy and antibiotics. This was not the homecoming I had envisioned; my body trembled with anxiety.
Guilt
Despite her condition, our daughter looked healthier than many other infants in the room. They were smaller, surrounded by more tubes and monitors. How long would they remain there? What challenges lay ahead? How were their parents coping? What would their journey home look like—if it ever came at all?
These conflicting feelings propelled us through the next few days as we returned to the hotel for brief naps and showers, then back to the hospital every three hours to nurse and hold our baby. This was no ordinary new parent exhaustion; we weren’t just walking down the hall to feed our newborn. Instead, we were driving silently through the dark, grappling with uncertainty while hoping for the best.
Those were three of the most challenging days of our lives.
On the third day in the NICU, we finally received some good news: our daughter was stable. There were no new symptoms or seizures. The doctors had ruled out the most severe causes of the stroke and suspected a blood clot was to blame. At that moment, we could breathe easier. Our terror and guilt began to dissipate as the attending neonatologist recommended discharge.
It was a bright, sunny morning when we finally placed our daughter in her car seat and prepared to leave the hospital. The click of the car seat ignited a wave of relief and excitement. We had faced our first of many heart-stopping moments as parents and emerged victorious. Though the future remained uncertain, we were finally able to bring our baby home. We were ready to be a family, and somehow, we knew we would be alright.
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