Remington’s Story - Congenital Diaphragmatic Hernia

This was a really rough pregnancy. I was diagnosed with preeclampsia, gestational diabetes, and extra amniotic fluid. I was sick the entire pregnancy. I was not given much time to process his diagnosis because I found out at 31 weeks that he had a moderate left-sided congenital diaphragmatic hernia with only bowels up, a VSD, and kidney problems. I was told he probably had genetic abnormalities and that his mortality rate was extremely high. This information did not make the pregnancy any easier and added to my high blood pressure. On April 28, 2022, at 4:30 pm, I was induced due to my blood pressure being in the 170s. After over 10 hours of labor, Remington was born at 36 weeks at 3:04 am. I was told before he came I would not get to hold him and to expect him to be blue and not crying, but he came out crying loud and had great color like a normal newborn baby. I held him for two minutes before he was taken to be intubated. After they took him to the NICU, I was unable to see him until 11:00 am that day. It was a long eight hours without seeing my baby boy.

One of the nurses had to take me to see him because I was on a magnesium drip for my blood pressure. They did an echo on Remington’s heart which showed he did not have a VSD. On his fourth day of life, they did his CDH repair surgery. He went into surgery at 11:45 am and was done by 3:00 pm. They found a hole bigger than expected as they found his bowels and spleen up. We were told they patched it, and luckily, everything went great during the surgery. I got to see him at 3:45 pm. His left kidney showed extra fluid due to a blockage under his kidney, but they wanted to wait about eight weeks before deciding when to do surgery. He ended up coming off everything fast and came home on May 22. Less than a month in the NICU — we are so grateful! He is now almost 3 months old and has a slight problem after he eats with throwing up and his breathing. He still has many appointments with specialists for his kidney, lungs, and heart, but overall, he is doing great. We are so proud of our little man!

2023 Update:
Remington just turned one! There have been many ups and downs in the last year, with constant doctor appointments, meeting new doctors, and two more surgeries since his diaphragmatic hernia surgery. He has had an orchiectomy because one of his testicles never descended, nor did it develop. His most recent surgery was just a month ago when he had a tonsillectomy and adenoidectomy. These two surgeries were rough as far as recovery went. Right after his orchiectomy, he caught a GI bug and an infection. He was admitted and spent a week in the hospital, and then two weeks after being released, he had his most recent surgery. Remington sees his CDH surgeon every three months, a pulmonologist and cardiologist regularly, urology for hydronephrosis, ENT for severe central sleep apnea, and GI for extreme reflux. We are waiting to see a genetics doctor because they think it might explain why his testicle has not developed. He sees an occupational therapist because he has not met all of the age-appropriate milestones yet, but otherwise, looking at him, you wouldn't know he had all of this going on. He is definitely a little fighter and has come back stronger than ever after all of his surgeries. We are awaiting another sleep study to see if the surgeries helped him at all with his sleep apnea and hope to come off nighttime oxygen. He is already pulling himself up, and I hope walking will be a milestone he won't be behind on as he is very determined. Despite all he has been through this last year, he is among the happiest babies I know.