Isabella’s Story - Congenital Diaphragmatic Hernia (CDH)
Isabella Rey is a rock star and has been wowing medical professionals and setting records since she was born. We found out about Isabella's condition about 5 months into the pregnancy. It was during a precautionary extra ultrasound that the doctors determined something was wrong. Unsure as to what the actual problem was, we were left with questions and fear. A week later, we were able to see the high-risk doctors and get the diagnosis. Left-sided CDH - liver and stomach down. We sat in an Applebee's restaurant later, reading the handout we were given and broke down crying when we read those terrifying words '50% survival rate.'
We started praying, doing research and quickly learned those statistics that would hopefully not apply to our baby. With CDH, every case is different and Isabella had a favorable one. With every scan and new doctor we met, the news got better. She only had small intestines in her chest cavity and had a decent amount of lung tissue; consequently, the team was very optimistic. The next few months were a blur of doctor's appointments, moving into our new house and a virtual baby shower to ensure we didn't get sick before delivery. We were scheduled at 39 weeks for induction on May 4th. We had already chosen Rey (a Star Wars character) for her middle name and it seemed fitting that she be born on "May the 4th be with you" day.
It wasn't meant to be as Isabella took her time and was born at 4 am on May 5th. We got to hold her for about a minute before they took her to the NICU to be evaluated. Her initial APGAR scores were good and the NICU team didn't intubate right away. After a few hours, they said we could see her. I will admit that the first image of her in the NICU is burned in my brain. She had so many tubes and her breathing was labored. It was really scary! Soon after, though, they got her cozy and relaxed, followed by numerous and frequent updates. She was doing great and needed minimal breathing assistance.
The surgery was planned for 2 days later. The surgery was almost delayed as the nurses were unable to get another needed IV line. I broke down as my baby did not have enough 'real estate' because she needed so many lines and tubes. They were finally able to get the line and continued with the surgery as scheduled. A few hours later, Isabella was headed back to NICU and the surgeon was coming to update us. He told us that Isabella's surgery had gone remarkably well, a 10 out of 10. The position and size of her hernia were ideal for performing a laparoscopic suture which would reduce scarring and the chance of recurrence.
From there, she really showed her strength. Every time we came back to visit, she had hit another milestone. Before we knew it, we were not only holding her but feeding and caring for her. Through all of the hours of book reading, storytelling and dad jokes, the days came fast with visible progress in her recovery. At only 13 days, a record for a CDH patient, she was ready to come home.
Today, Isabella is happy and thriving. Each doctor's appointment and follow up, she is proving to everyone she is a fighter. Life is still a little different for us as we have to take extra precautions to make sure she does not get sick, but we are so grateful to the amazing team that got us here. We continue to read Harry Potter every day for now and we have added some new fun activities, most notably dance parties and workouts (with rattles of course). Overall, she does not show any symptoms holding her back from a full life and we could not be happier!
We believe God brought us through this for a reason and maybe that is to provide hope. So many people prayed for her and supported us through the entire process. We are stronger as a family now than if we had a different journey. Isabella is our little rock star. She brings so much joy to those around her. We are praying for your Tiny Hero, too, and believing in your miracle; they really do happen.
