My Little Preemie was born at 33 weeks + 5 days gestation. She was born early in March 2019, and weighed under 5lbs. I figured I was going to have a early birth, but when she was born, I did not get to see her right away. I could not see her until 8 hours later.
When I saw her, I was petrified. Her little head was bruised and misshapen. She was intubated. It is frightening… no one can prepare you for the NICU. I watched my daughter through the glass of an isolette and reached my hands through two little holes to touch her.
After 5 days, I got to hold her and after that, holds did not happen often because we had to navigate through so many wires and cords. I remember after two weeks, I said to the nurse, “These little humans are so resilient” and she responded, “all they know how to do is to fight for their lives.”
When she was in the NICU they ran many tests and one showed that she had a tiny brain bleed but they didn’t suspect that it would be anything damaging. She also fought off meningitis in the NICU. I watched her go back into “bay one” after 3 weeks when she was thriving to being monitored one on one by a neonatal nurse. After 7 weeks, she was able to come home.
We were continually followed up with the NICU team at the hospital and the Alvin Buckwold Childhood Development Program. They were monitoring her growth and her head shape. Because of the corrected age, I never felt like she was too behind with milestones. Of course I compared her to other kids her age, but I never worried about anything… I figured “in her own time she will do X, Y, Z.” We went to all of the extra appointments preemie babies have to go to and everything always panned back as “typical”.
After about 9 months of follow up, we started seeing OT and PT biweekly to work on hitting milestones she was behind on. It was mainly to watch and make sure that everything was progressing. Again, I did not think anything of it. Because she was preemie, she needed extra support, and I was going to go to every appointment I had to to make sure she got what she needed.
I remember around the beginning of September 2020, she was 18 months old, we were in therapy, and I asked the therapist why she wasn’t doing something, pull to stand, I think, and she responded something like, “that's due to cerebral palsy.” That is the first time I heard the term “cerebral palsy.” I remember feeling confused and asked what she meant and she just said that with her experience, Presley presents as if she has Cerebral Palsy. She said that she couldn’t confirm anything and that Presley would need to see a Developmental Pediatrician to assess her and potentially make a diagnosis.
Within days, we saw a Developmental Pediatrician and a team at ABCDP and within 2 hours they diagnosed her Spastic Diplegia Cerebral Palsy level 1-2. I had to mourn the reality that my daughter had a disability. No one ever prepares or really even talks about the reality of being a parent to a child with a disability In November 2020, she received her first pair of AFOs to assist her with her walking. In June 2021, Telemiracle accepted my request to provide her with her own walker.
Presently, we see a team at ABCDP, including a Physical Therapist twice a month, as well as a Speech Therapist and an Occupational Therapist once a month. Every 6 months, we meet with the Developmental Pediatrician and Social Worker. Every year, we meet with the Orthopedic Surgeon. On top of this, Presley goes to chiropractor appointments that help her stay adjusted.
This journey of Cerebral Palsy and receiving a diagnosis is not easy. They say that parents with children who have disabilities are “special because we are only given what we can handle” but the truth is, we are handling it because we have to. We handle it with fear and grace because we see our children moving through life with their diagnosis resiliently. We do it because the love for our child is greater than the fear of their diagnosis.
If you want to know more or have any questions about my experience, connect with me on Insta @paige_bautz