When I was 24 weeks pregnant, we received shocking news that Jack had a heart defect. Initially, we did not know any specifics about what this would mean and it sent our minds spinning because of the unknown nature of the situation. We had back-to-back appointments in the following days and a cardiologist gave us more information about Jack's heart defect: an unbalanced AV canal (AVSD) and Tetralogy of Fallot. At the time, we were told he would need surgery between 4-8 months of age.
Jack spent 30 days in the NICU at Children's Nebraska in Omaha, Nebraska following his birth. We went through a number of ups and downs during this time and were very thankful when the time came to take Jack home. Jack was then put in an Interstage program through the hospital where he had monthly appointments and was monitored closely by his medical team. We also used an app at home to track his oxygen saturation levels, feedings, and weights daily.
Jack's surgery timeline was once thought to be somewhere between 4-8 months of age, but since he continued to do well, the discussion about surgery was not being brought up yet by his medical team. When Jack got closer to a year of age, his case was discussed by the cardiology team as to what type of heart surgery would be best. His case was not fully straightforward and there was some gray area because of his specific heart defects. Due to this, we felt it would be best if we got a second opinion, so we reached out to Boston Children's Hospital. We found a highly skilled and knowledgeable surgeon there who does Jack's type of surgery quite often, so we made the decision to move forward with BCH and schedule to have Jack's surgery there.
The surgery got scheduled at the beginning of October 2022 with a surgery date of January 30, 2023. We were thankful to have a date, but knew this meant more waiting and it was crucial that Jack remained healthy so we kept him isolated over the holidays. The time came to head to Boston and we arrived one week early for a few days of pre-op appointments. We were filled with so many emotions of anxiety, fear, and worry as surgery day approached, but knew he was in the best hands. His surgery went really well and we were beyond thankful and relieved! The next week he stayed in the hospital for recovery. He was discharged from the hospital eight days after surgery and after 19 total days in Boston, we were able to head home!
The entire journey leading up to surgery and then traveling to Boston was emotional, exhausting, and really difficult, but also life-changing, beautiful, and so surreal at the same time. We left Boston feeling so proud of Jack and his strength, resilience, and overall spirit. We now looked at the scar on his chest and were reminded of just how brave he is. Our little heart hero!
Fast forward to November 2023, Jack had a cardiology check-up at Children's Nebraska and
everything looked good and his cardiologist is very pleased with how well he's doing! He was cleared to come back in one year. We're forever thankful for the amazing care that Jack has received both in Omaha and Boston.
-Tess, Jack's Mom