Reflections on a preemie, 11 years later
On this night, 11 years ago, John and I arrived at the University of Iowa Children’s Hospital. I sat in the front seat of the ambulance for the longest 25 minutes anyone has ever endured as we sped from Cedar Rapids to Iowa City. I was helpless as the medical personnel in the back of the ambulance kept my baby alive. I willed the driver to go faster as we drove down Melrose toward the hospital. “Why are you going so slow???” I screamed in my head. Once we arrived, at one of the top three teaching hospitals in the country, they took John - weighing right around two pounds – and got to work, saving his life. I was led out of the room. My parents arrived, and we called the priest. I don’t remember what he said. I only remember being in John’s room and making the sign of the cross. His nurse did too; I don’t know if she was even Catholic, but she made the sign of the cross with us, and I felt better.
I was sent home, told to sleep, to come back in the morning. I did not sleep. I sobbed, begged God – with whom I was not particularly close – to save John. He was so good, so sweet. Take me instead; I’m an awful person.
For a week, I was afraid to leave his side. I worried he would die if I went to the bathroom. I stayed in a guest room at the hospital, scared to sleep at night, so I watched SoapNet – that day’s episodes of The Young and the Restless, All My Children, One Life to Live. I usually managed to fall asleep as General Hospital started. The phone rang around six. “He’s dead,” I thought. His night nurse told me he made it through the night, and the doctors would round later in the morning to discuss his plan of care.
The doctors wouldn’t look me in the eye. They wouldn’t tell me anything in definitive terms. I caught one of the them in line in the cafeteria around 2 a.m. “I need numbers. What are his odds?” I asked. He paused. “50/50,” he said. He took his tray and hurried away. I sat, alone at a table, and ate my watermelon. “50/50,” I thought. At least that’s something.
I just went into John’s room. He’s 11. He’s healthy. His long skinny legs take up most of his twin bed. His stuffed dog, Fluff Fluff, is on the floor. I pick it up and place it next to him. He’s not supposed to be here. He almost wasn’t.
I parent too much; I helicopter. “I didn’t understand why you parented like that until I got to know you, until I heard his story,” a newish friend told me.
I couldn’t breathe for weeks. So many consecutive nights when I couldn’t sleep, waiting for the phone to ring, waiting to be told he was dead. I was in the same hospital. The walk to his room was seven minutes if I hurried. But he would have been gone before I got there. That was our reality.
My parents, my grandparents – they lived it with me. No one else knew I was expecting, let alone John had arrived and was critically ill. It was our experience. No one will ever know what that felt like. No one else will ever love him like we do.
So we celebrate bizarre anniversaries. His birthday. A week later, the day I first held him. The day he got ill. The night he transferred to Iowa. His first surgery, his second, his third – all before he was ten weeks old. The day he moved from Bay 1 – for the most critically ill babies – to Bay 2. When he was discharged from the hospital, 107 days later. The anniversary of the day he got to see a “real” pediatrician, not a doctor at the University as an inpatient. The first day the visiting nurse came to weigh him…she came every other day for the first months home. The first night I didn’t sleep on the floor next to the crib. That was in August. It’s still only May – months until that anniversary.
At night – 11 years later - I still sneak into his room, place my hand on his back as he sleeps. I make sure he’s breathing. I wait until he stirs before silently backing out of his room. He goes through phases where he appears next to my bed at 3 a.m. It startles me and annoys me, but it’s also a relief. He’s alive!
A friend I haven’t seen in years asked about John. “He’s wonderful,” I said. “He’s amazing and perfect in every way.” And I go into his room one more time before I can sleep.