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On April 29, 2024, our sweet Vance was born. Up to this point I had a normal pregnancy and normal delivery via c-section. Derek and I got to hold Vance for a short period before he was whisked away to be cleaned up and checked out. Shortly after, Derek and I would hear the news no parents ever wants to hear - Vance had dropping oxygen levels and a very pronounced heart murmur and needed quick action/intervention. The St Anthony nurses and doctors were nothing short of amazing and took great care of him while we made the decision for Vance to be life flighted to Children’s in Omaha.
The nurses and my doctor at St. Anthony were the best, even in a situation where no one knows what to say. We’re so thankful for their care and compassion. Shout out to Wendy who’s been my nurse for all three of our boys deliveries, and to Brooke who came in to just sit with me for a bit.
Later that day Vance was diagnosed with Tetralogy of Fallot with pulmonary atresia which was ultimately caused by a genetic mutation 22q 11.2 deletion syndrome. He required his first open heart surgery at 7 days old and a one month stay in the cardiac unit. We have since been back and forth several times to children’s for appointments and Vance has proven how resilient he, which is quite spectacular when you think about his diagnosis. Vance is the sweetest and his two older brothers adore him. He has overcome EVERY SINGLE OBSTACLE that has been thrown at him. We often tell people if you didn’t know anything about his diagnosis, you’d never know anything was wrong. He continues to grow and thrive.
While this journey has not been easy, it’s also been so rewarding. Our hope for other parents in similar situations with heart warriors is that they know that it’s OKAY to feel every emotion in the book and those feelings are VALID…anger, happiness, hope, resentment, exhaustion, defeated, anxiety, and joy. We also hope eventually, the good days outweigh the bad. A few things we’ve learned: have steadfast faith, lean on family and friends, always advocate for your kid, and control what you can you can control and then go with the flow and trust God and the doctors in your corner. Vance’s cardiologists, surgeons, and nurses are top tier and we thank them for their talents.
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