Our sweet boy, Jonathan Creed ("Johnny"), was born on March 20, 2026, at just 34 weeks gestation at OU Children's Hospital in Oklahoma City, weighing only 3 pounds, 10.5 ounces. From the very beginning, he has faced more challenges than we ever could have imagined.

Shortly after birth, Johnny was diagnosed with Down syndrome, pure esophageal atresia, duodenal atresia, Hirschsprung's disease, and multiple congenital heart defects, including a large ventricular septal defect (VSD) and large atrial septal defect (ASD).

At just 4 days old, Johnny underwent his first surgery to repair his duodenal atresia and have a G-tube placed so he could receive nutrition.

Just shy of 2 months old, his surgeons attempted to repair his esophageal atresia. During surgery, they discovered his case was much more complex than expected. The gap between the two ends of his esophagus was too long, and the lower pouch was much shorter than anticipated, making it impossible to safely connect them at that time. During that same surgery, Johnny also underwent his colostomy for Hirschsprung's disease, and his surgeons placed his upper esophageal pouch under tension to help prepare him for a future repair.

On June 9, 2026, at only 3 months old, Johnny underwent open-heart surgery to repair his large VSD and ASD. We are so thankful to share that his surgery was a success, and he has recovered incredibly well. Today, he is breathing completely on room air, tolerating full feeds, and continuing to grow stronger every day.

Johnny has spent his entire life at OU Children's Hospital, where his doctors, nurses, and care team have provided him with exceptional care. Because his esophageal atresia is so rare and complex, they partnered with Boston Children's Hospital's Esophageal and Airway Treatment Center, where Johnny's case was reviewed and accepted for treatment.

If all goes as planned, we will travel to Boston on July 12th. Johnny will undergo a gap study on July 14th, followed by his long-awaited esophageal repair surgery on July 16th. Our greatest hope is that this surgery will finally allow his esophagus to be connected and bring him one step closer to taking his very first bottle.

Although we are so thankful for how far Johnny has come, our journey is far from over. Traveling from Oklahoma to Boston for specialized care comes with significant expenses, including transportation, lodging, meals, and time away from work while we remain by Johnny's side.

Every donation, share, and prayer has helped carry our family through these past few months. If you are able to give, we are deeply grateful. If not, sharing Johnny's story and keeping him in your prayers means just as much to us.

From the bottom of our hearts, thank you for following Johnny's journey and supporting our family every step of the way. We truly couldn't do this without you.

With love and gratitude,

James, Natasha, JJ & Johnny