I’m not sure where the last 10 years have gone. But it feels like only yesterday we were standing beside the Isolette in the Neonatal Intensive Care Unit (NICU) looking at our 2-pound 11-ounce baby girl.
She looked like a wrinkled little old man. She quickly lost all of her brown fat and dropped down to 2 pounds 6 ounces. And our life began to revolve around daily life in the NICU. My husband and I were so worried about how we would make it through this scary experience.
We had to learn about things like retinopathy of prematurity (ROP), apnea and bradycardia events (A’s & B’s), and all kinds of other medical terms. We were surrounded by nurses, doctors, and therapists.
These medical professionals would give us hourly updates. They let us know when we could hold our precious baby for the much anticipated “kangaroo care.” We lived for these moments when we could hold and bond with her. Those were the moments when we finally felt like her mommy and daddy.
Our daughter finally came home about a month after she was born. She weighed almost 5 pounds by the day we took her home to meet her brothers and sister. Those early days in the NICU were scary but we learned to advocate for our tiny baby girl. And that advocacy has continued over the last 10 years.
She is now a healthy happy 10-year-old. She is struggling a bit academically, but we are hopeful that with the right interventions at school she will continue to grow and learn at her own pace. And we will continue to learn how to be the best parents for our tiny miracle!
If you are a parent with a child in the NICU, this information will be helpful.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.