Once A Preemie, Always A Preemie? Not Necessarily

by Stacey Skrysak
Stacey Skrysak

As we stood crowded near the door, my daughter scanned the room, her face full of delight. It was the first day of preschool, and after a summer away, she was eager to see some familiar faces. In the thrill of the moment, my daughter began to ask me a question.

But the excitement was too much — she couldn’t get her words out. As she repeated herself a second, third, and fourth time, I patiently waited for the question to come out. Next to me, a child blurted out, “Why does she keep saying the same thing?” The boy’s mother immediately shushed him, embarrassed by his words. As I looked at my daughter with growing sympathy, the early days of her life flashed before me. Once a preemie, always a preemie.

As first-time parents, my husband and I had no idea what to expect. Being pregnant with triplets, we knew that our children would be premature to some extent, but we never imagined the road our lives would take. After delivering our trio at 22 weeks gestation, we faced a tragedy that changed our lives forever. Within two months, we lost two of our children. Our lone survivor was now our lone child in the NICU.

Stacey Skrysak

Our daughter, Peyton, faced a slew of problems. At only 1 pound, her lungs were weak, her heart was struggling, and her body was recovering from a serious brain bleed. Each day, as the doctors made their rounds, we heard a dictionary of medical jargon. Blood transfusions, PDA, bilirubin, and ROP all became normal terminology. But as her fragile body began to grow, so did our hope. At nearly 4 months old, we brought our daughter home from the hospital.

Being a micro preemie, we knew our child would face a long road to recovery. The first several months were spent lugging around an oxygen tank. And for three years, our house became a revolving door of therapists. It’s a lot of work getting a child up to speed, especially for a girl born more than 17 weeks premature. While many doctors say a preemie is usually caught up by age 2, we knew it would be much longer for our little girl.

As Peyton slowly broke free from her premature setbacks, friends and family couldn’t help but notice the changes. Peyton was petite, but growing. Her delay in speech gave way to an explosion of words, while her weak core began to strengthen. As many people pointed out, she looked happy and healthy, with no visible signs of being a preemie.

It’s true, if you look at my daughter you would never know that she dipped down to 16 ounces at her smallest. You would never know that she was given a less-than-10% chance of survival. She’s the epitome of a miracle child, but looks can be deceiving. At 4 years old, she still struggles with her lungs. All it takes is a cold or even smoke in the air for the wheezing to return. Peyton’s well-versed in nebulizer treatments, and she knows where we store the pulse oximeter. She may look strong and healthy, but a simple jog on the sidewalk is proof that her core is still strengthening.

Her biggest setback is the most noticeable — her speech. In what her therapists believe is apraxia, Peyton’s mouth can’t keep up with her brain. When she gets excited, she begins to repeat herself or stutter. While these are all issues we hope she will grow out of, we know her preemie status is here to stay. Many children born early face difficulties in school and doctors have warned us that Peyton may struggle in certain subjects. But we’re not concerned. All it takes is one glance at our NICU days to see how far she has come.

Stacey Skrysak

As the doors to school opened, my daughter’s question finally erupted. “Do you think we’ll go outside to play?” she asked with enthusiasm. I couldn’t help but chuckle as I assured her there will be recess on this first day of school. After getting settled into her new classroom, I quietly observed from the hallway. My sweet little girl is moving mountains, proving that even the sickest children can adapt to the challenges life throws their way. We don’t know what the future holds for our miracle preemie, but we know she’ll be okay. The smallest babies are some of the biggest fighters, and our daughter will use her preemie strength to guide her way.