I had what I thought was a normal pregnancy until I was 7 months pregnant. At the baby’s growth ultrasound they saw that the blood flow to my son’s umbilical cord was abnormal. His heart rate dropped a couple of times during my NST’s, and he was small inside me, at the 20th percentile in size. I was sent to labor and delivery and it was determined that at 36 weeks it wasn’t safe for him to stay inside me anymore. DJ was born 4 weeks early on December 7th, 2019. He was 4lbs 2 ounces and automatically went to the NICU because of his size. I knew something wasn’t right as soon as I laid eyes on him.
Besides being absolutely beautiful, his head was abnormally big. The nurse reassured me that it would go down by the time I recovered from my epidural and went to see him. His father and I were not prepared for what was to come. The doctor sat us down and told us that they couldn’t tell us if DJ was going to make it another day. He had a stage 3 brain bleed and he wouldn’t stop bleeding from a blood draw that they had done hours earlier. We found out his platelets, neutrophils, and red blood cells were low. No one wanted to say it to me, but they were thinking it was leukemia. CMV was a possibility but because he wasn’t symptomatic with the calcifications on his brain, they weren’t sure. A week later the test came back positive for congenital CMV. At that point they said DJ had a fighting chance.
We spent a month in the NICU and everyday got harder because I was already so attached to him and I was sure I wouldn’t be strong enough to lose him. I was furious with the doctors because I didn’t understand why there wasn’t testing for something as serious as congenital CMV during pregnancy.
We are coming to the end of a long, 6-month treatment on valganciclovir. DJ is 60% deaf and has a 75% chance of losing his hearing all together by the time he is 5. We’re still waiting to see if he will require a shunt for the hydrocephalus. We are starting the process for his cochlear implant when he turns 1. So many things are still uncertain, like the fact that he could still develop cerebral palsy. He’s my first and only child. I love him more than life itself and I will do anything it takes to get him the best care. DJ has an amazing team of doctors behind him and so much support from both sides of the family. He really is the most beautiful human being I’ve ever laid eyes on and I wouldn’t trade anything we’ve been through. He’s making all of his milestones slowly but surely and is only a little bit behind in his development.
To me, DJ is the definition of a fighter. Watching him fight for his life made me realize that I need to stay strong for him and just be the best mommy that he deserves. I’ve learned so much and I am now starting my journey to become a neonatal nurse, so that at some point I can help young moms going through something like I experienced. I’m a recovered drug addict and I made the decision to get clean before I even knew I was pregnant. I’ve made so many positive changes in my life and I couldn’t be prouder to be DJ’s mommy.
- Shared by his mother, Valerie
Posted: 5/12/2020 1:53:03 PM