Addison’s CDH Story
While pregnant with Addison, I was diagnosed with gestational diabetes and polyhydramnios. I would go bi-weekly for ultrasounds to monitor my amniotic fluid levels. Other than the extra fluid surrounding the baby, every ultrasound was perfect since the beginning. That is until my 32-week ultrasound… the one time I went alone. I ended up at the office for over four hours as they performed countless ultrasounds of my baby. The ultrasound tech walked out without saying a word to me, then came in moments later and just started scanning again like she never left. After a few more ultrasounds, she walked back out. The high-risk OB (MFM) eventually came in and told me they believed she had a defect and they were going to refer me to Texas Children's Hospital. While there, they went back through all my previous ultrasounds and never saw anything abnormal. The MFM proceeded to scan me herself and began to tell me about something called congenital diaphragmatic hernia — CDH.
I felt as if I had been slapped in the face. Just hours before this appointment, I was pregnant with the most perfect baby – something I had been dreaming of for years. Only to come to a routine check-up to be told my baby had a defect. A defect I knew nothing about.
I got to my car and instantly called my mom because I needed my own mom in that time of dire need. I was sobbing so hard she couldn't even understand me. Once she calmed me down, I then proceeded to call my better half to tell him the news. The following week, I was at Texas Children’s getting an MRI and more ultrasounds. After meeting with the CDH team and being told about her diagnosis, I decided to switch my OB there so that she could be born at that hospital. At 37 weeks and one day, I was at work when a pounding headache came on. My vision got blurry, and my memory was terrible. I called my OB, and they stated I needed to get checked out. I was admitted as soon as we made it to Houston. They did all the lab work and then said I would be induced that day. It was a long three days and three hours of pushing when we finally had a New Year's Eve baby!
Addison was born with left-sided CDH with some intestines and spleen up. She was intubated within the first two minutes of being born, and on day three of Addie's life, she had her repair surgery. They were able to fix her hernia laparoscopically with sutures, after which she was only in the NICU for three weeks. (Praise God). Her dad and I did not miss a day of going to see her while in the NICU. Our house was a little over two hours from the hospital, so my parents pulled their camper to a nearby campground, so I didn't have to be far from her. We weren't even six miles down the road from her.
I made sure never to miss 9 am rounds, bringing plenty of snacks, drinks, and my charger every day. I also pumped every three hours. The days were long. Some days were harder than others. She got extubated on day nine & put on CPAP on one of the lowest flows. The hardest day to see was when they took her completely off sedation and put her on CPAP. No matter what I did, I felt as if I couldn't console her. They ended up giving her a PRN to help soothe her. Five days later, she was taken off CPAP and on room air. She also got to try her first bottle that day too!
Once Addison was on room air, we got moved from level 4 NICU to level 2. The night before being transferred to level 2, Addison took it upon herself to remove the feeding tube she had through her nose. They decided she no longer needed it since she was handling bottle feeds so well. I was then told I needed to sign up for my car seat class because the day of taking our girl home was getting closer.
I couldn't be more thankful for the nurses, NPs, and doctors we encountered during her stay. They will all hold a special place in my heart for caring for our girl during her stay. At exactly three weeks old, Addison got to come home. She is now two months old. She loves all the attention and is starting to find her voice. Her three small incisions are healing so nicely. She's gaining weight so well, too. The only medicine she is at home on is reflux medicine. I know when you get the diagnosis, the worst thoughts come to mind, but life does not always turn out to be the worst-case scenario. I am so proud of my CDH warrior.
