Chicago Congenital Heart Walk

December 23, 2024. The day our lives changed forever.

During our 20-week anatomy scan, we learned that Elijah would be born with a rare and life-threatening congenital heart defect—Tricuspid Atresia / Hypoplastic Right Heart Syndrome. In an instant, the vision we had for our pregnancy and our future shifted. The months that followed were a whirlwind of long drives to Lurie Children’s Hospital, fetal echos, weekly stress tests, and heavy conversations with the cardiology and surgical teams. It was a season of endless research, many prayers, and a fair share of tears and fears.

A Different Kind of Beginning

Elijah’s first few months were anything but “typical.” After he was born, we spent nearly three weeks in the Cardiac Care Unit (CCU). We lived in a constant state of uncertainty. One day we were preparing for one type of surgery; the next day, it was a completely different possibility. A few days later, the plan shifted again.

We eventually went home without surgery, but we still needed to monitor him very closely. Our days were dictated by data: tracking daily weights, oxygen saturations, heart rates, and exact feeding ounces. Between weekly check-ins and a schedule full of physical, occupational, and nutrition therapy, our “normal” was a marathon of medical monitoring.

The Turning Point

Shortly before Elijah turned three months old, we noticed his oxygen levels were dropping below his baseline to unsafe levels. What was supposed to be a diagnostic catheterization on August 11th turned into a life-altering moment: the doctors told us we weren’t leaving. Elijah needed his first open-heart surgery—the Bidirectional Glenn—sooner than anyone had anticipated.

August 15th became the second day our lives changed forever. There is truly nothing that can prepare a parent for the moment your child goes into surgery, knowing they will be gone for 8–10 hours. But that day, Elijah showed us exactly who he is: a WARRIOR.

Thriving and Moving Forward

Since his surgery, Elijah has been absolutely thriving. He is making incredible strides in PT and OT, and he was recently discharged from nutrition therapy. Watching him hit his milestones fills us with a pride we can’t put into words.

While we know we still have a long journey ahead—as his CHD will be a lifelong battle—we are choosing to celebrate how far Elijah has come and to support the future of all heart heroes. Thank you for being part of Elijah’s Entourage!

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