A Preemie Story: The Roller Coaster That Never Ends

Shared with us by:
Valkyrie Schmidt
August 4, 2013

Doctors and parents alike have often been quoted calling the life of a premature baby a roller coaster ride, starting at the crucial moments the baby is born. They say that by the time you are awake and aware enough to know what’s going on, you know in your heart it’s too late to do anything but hang on for the ride. For me, it was well before that; during the time leading up to my daughter’s birth at approximately 26 weeks. She was born because she wasn’t growing in my womb, and I had such severe preeclampsia, both of our heart rates were dropping drastically, and the doctors were afraid I would start seizing.

I was wheeled in to the OR, given the epidural, and an emergency C-section later, my daughter was born. Sadly, I was so heavily medicated I don’t remember most of it. I couldn’t touch my daughter because her skin hadn’t even grown over her, and I was so drugged that I’m told she cried, but I don’t even have that to remember.

Fast forward to the next day. The drugs had started to wear off, and I was wheeled into the NICU for the first time ever. I had to wash my hands in the large, metal sinks, then put on hand sanitizer. When you first open the door to the NICU, you notice it’s very dark, and mostly quiet, save for a few lucky babies who were born strong enough to cry and be in a crib. You smell that so powerful scent of sanitizing chemicals, so thick you can almost taste it burning in the back of your nose and eyes, mingling with the salty tears you’re trying so hard not to shed. You see yourself reflected in the faces of the other parents: the wide, pained eyes; the hurried and distracted pacing, as if just sitting could end your child’s life.

I remember so vividly her little naked shape. She was so very red, even under the iridescent blue of the bilirubin lights; because her skin had not formed. She had what looked like the smallest sunglasses in the world, to shield her still-sealed eyes from that unforgiving light.

As you sit and pray, you hear the constant sounds of the monitors and machines of yours and every other child in the NICU. So often the alarms sounded, and everyone’s heart stopped; praying it wasn’t their child, and that whoever’s alarm it was, they would survive. That’s part of why they call it “the roller coaster ride”, because every child has good days, and bad days. You just had to pray that on those bad days, they still fought to survive, and that you wouldn’t have to suffer the ultimate sorrow.

One of the worst feelings in those first weeks, and maybe longer is that you can’t touch your child, for just to touch would break their paper-thin skins and kill them. You must console yourself to touching the hard plastic of the isolette, or the soft cloth of a receiving blanket and you wear it to leave your scent on it; to place in the isolette for them, to comfort them as the suffer and struggle to survive.

After the draining weeks turn into months, and you have suffered through surgeries, scares, pain, and fear; first you become numb. Then, if you are lucky, you get hope. Hope from the start is what keeps you from falling into despair every time you glance up from your baby to see another’s parents sobbing across the room. Hope is what makes you forge friendships with the parents whose baby is right next to yours. And hope, after those awful months, is what brings your baby home.

My daughter came home 4 and a half months after birth, and I remember as I walked out of the sterile hospital, and into the warm early September breeze, I was terrified, but excited. I could hold her, feel her warmth against me as often as I wanted. I could smell the airy sweetness of her, almost like a doughnut or powdered sugar. I could see her, day and night; wake up and she would be there, breathing so softly in the bassinet next to the bed. It is definitely a roller coaster ride; but it is also the ride of a lifetime.