Leaving My Heart In The NICU

My husband and I had finished packing our things and were leaning against the hospital bed holding hands when the pediatrician returned from the discharge exam … without our newborn daughter. The serious expression on her face sent a wave of panic across my body. I squeezed my husband’s hand and braced myself for the doctor’s words.

“Your daughter started seizing during our examination. We’ve had to admit her to the Neonatal Intensive Care Unit,” she informed us.

We froze on the edge of the bed, speechless. My head was spinning; my heart was racing; my breath was short. This couldn’t be happening. We’d already dressed our daughter in her special Going Home outfit. We were ready to begin our exciting new life with our first child. We were ready to take our baby home.

The doctor approached us: “I’m sorry. I know this is coming as a complete surprise. We’re running every possible test to figure out what’s going on. Have you noticed anything strange?”

I quickly replayed the past few days. Our daughter had indeed made a dramatic entrance into the world. She had been preterm at thirty-six weeks and was born with the cord wrapped around her neck and no respiratory effort, but the doctors who’d rushed into the “code blue” delivery room had quickly resuscitated her. After that initial scare, things had settled down. She seemed healthy. She was eating and sleeping well. At seven pounds nine ounces, she was a good weight even for a non-preterm baby. But…

I stammered, “She was jerking. Her arm was jerking. I talked to the nurse about it yesterday. She told me it was nothing.”

“Hmmmm…” the doctor contemplated. “It’s possible that was another seizure, and it’s imperative that we figure out why she’s having them. I’m going to go back to your daughter now, and someone will be with you shortly to discuss next steps.”

So rather than taking our baby girl home as planned, my husband and I spent that afternoon getting acquainted with strict NICU protocols and following our baby around the hospital as doctors and technicians ran a barrage of tests, including MRIs and CT scans. We waited helplessly from behind closed doors and watched through Plexiglas windows.

The gravity of the situation started to sink in. Our newborn was having recurrent seizures, and no one knew why. What was going to happen to her? Was she going to be okay? My husband and I tried not to speculate what they were looking for with all of the tests and scans. We just held each other tightly and prayed.

The overnight facility adjacent to the NICU was full, so we had to leave the hospital to attempt to get some rest and establish a base of operations. We left that hospital without our daughter—I left my heart in that NICU.

We couldn’t go home. We needed to be close. So we checked into a nearby hotel feeling a loneliness and despair for which we had not been prepared. I held myself tightly in the hotel bed, a deep, cold ache in my body, my shaking hands rubbing my stomach. My baby was no longer inside of me, and neither was she in my arms.

The doctors eventually determined that our daughter had suffered a stroke either in utero or after she was born. The stroke offered a possible explanation for why she was born three-and-a-half weeks early, and it was definitely causing the seizure activity.

But they didn’t know why the stroke had happened. More testing was needed. Our daughter needed to stay in the NICU, and we couldn’t bring her home.

As I sat in that NICU the next day, I looked around at all of the medical equipment: the infant warming beds, the feeding tubes, the IVs, the monitors. With tears in my eyes, I looked at all of the other babies, and I had two distinct feelings:

Terror: Our daughter had suffered a stroke, and we didn’t know the cause. How would this impact her life? We didn’t know much about pediatric strokes, but we knew they were serious. The doctors were performing an EKG, running blood and DNA tests, and giving her photo-therapy and antibiotics. This was not the homecoming I’d imagined. My entire body was shaking from deep inside.

Guilt: Even though my baby had had a stroke, she looked so much healthier than the other babies in that room. They were all so much smaller, with more tubes and monitors. How long would these babies be here? Weeks? Months? What did their futures hold? How were their parents coping? What would their homecoming be like—if they had them at all?

Those two feelings were what propelled us forward as we went to the hotel for naps and showers and then back to the hospital every three hours to nurse and hold our baby. This was not the “typical” level of new parent exhaustion; we couldn’t just walk down the hall of our house to feed our newborn. We had to drive silently in the middle of the night. Fearing the unknown. Hoping for the best.

Those were three of the most harrowing days of our lives.

The third day in the NICU, we received good news: our daughter was stable. There were no new symptoms or seizures. The doctors had ruled out the most serious causes of stroke and believed the culprit to have been a blood clot. At that point, only time and ongoing care would reveal a long-term impact. We felt ourselves breathing freely again at the discharge recommendation from the attending neonatologist. Our terror and our guilt began to subside.

It was a beautifully clear and sunny morning when we finally got to place our daughter in her baby carrier and leave the hospital. The click of the car seat initiated a wave of relief and excitement. We had faced the first of many heart-stopping moments as parents, and we had triumphed. We were looking at an uncertain future, but we were finally able to take our baby home. We were finally going to be a family, and that meant we were going to be okay.

Related post: What To Expect With A Premature Baby