Preemie Story – June 2023

Preemie’s Full Name: Christian Johnson
Parent Name: Jennifer Peaden
Gestation at Birth (weeks): 32 weeks
Days in the NICU: 40 days

You never know how strong you are until being strong is your only choice. – Jennifer Peaden

Preemie Story:

Christian has many health issues but is doing great! He’s now 18 years old. He was born weighing 3 lbs, 2 oz. and doctors had slim hope that he would be able to do things such as walking and talking. That boy goes anywhere he pleases and never shuts up, lol! With therapies and great doctors, he did really well. He had heart surgery for tetralogy of Fallot at 7 months and shortly after, he needed a trach.

He was also born with kidney reflux, bone deformities, deaf in the left ear, Duane’s Syndrome, and an extremely rare chromosome deletion of number 7. It is so rare that he is the only person in the world EVER to have had this. Now at 18, he still sees cardiology for a small membrane and they check to make sure everything looks good from his heart surgery. Developmentally he’s delayed but he’s able to do a lot on his own. I still have to help him with things like bathing due to weak dexterity in his hands. He’s had many foot surgeries as well as kidney surgery. He still has the Duane’s Syndrome that affects his eyes and once he hit puberty he developed epilepsy but luckily his meds have it under control.

He still wears a hearing aid in his left ear. He also has kidney disease stage 3. He has a history of UTIs but is manageable with proper bathroom habits. Most of his activity of daily living needs I have to do for him or help. He’s extremely intelligent despite his intectual delays. He’s always smiling and happy and always making others smile. My nickname for him has always been Living Miracle!

Advice for parents in the NICU:

NICU nurses are amazing! Try to develop a good relationship with your NICU nurse. Talk to the parents in there with you. Trust your instinct. If you feel like something is wrong with your baby but the doctor thinks it’s okay keep pushing until you get your answers; doctors don’t know everything and God is in control. I know it’s easier said than done but try not to worry too much and pray that everything will be okay.

Preemie’s current age and milestones:

Christian in now 18. He just graduated from high school, something I thought a few times that he might not ever do. He can read and write a little and that’s definitely two things I’ve been told he might not be able to do.