Meet Ryder
RYDER’S STORY
It was May 10th when our world changed. That day will forever be seared in our minds. We were expecting our first child, a boy! We had so many dreams and plans for him. But on that particular day in May, we quickly learned that things don’t always go as planned. Our son was diagnosed with a Congenital Diaphragmatic Hernia (CDH). We were stunned; time seemed to stand still for a while.
The news of our boy’s condition came over three months before he was born, giving us time to learn about this condition, have multiple consults and ultimately prepare to temporarily relocate to St. Petersburg, Florida so he could receive the very best care at Johns Hopkins All Children’s Hospital by Dr. Kays and his dedicated CDH unit.
Ryder Jackson Coonley was born on August 29th, six weeks early, weighing five pounds, thirteen ounces. Within six hours, he was put on ECMO to give his little body time to rest, recover, and prepare for the many hurdles ahead.
The very next day, Ryder underwent his first surgery. He pushed through it like a champion. However, the battle was far from over. Over the next few weeks, he experienced two pulmonary hemorrhages and two attempts to get him off ECMO as he tried his hardest to get his lungs to work. Finally, at three weeks old, he was able to come off ECMO and was put on a standard ventilator.
Clearly, Ryder was showing the world that he was a determined fighter. That spirit has, and will continue to, serve him well. There were times, though, when that determination caused him more than a little bit of grief; for example, the time when he inadvertently extubated himself. It took two attempts to get the breathing tube back in—he was down for longer than expected. As a parent, there’s nothing worse than standing by, feeling completely helpless, as your child struggles to hang on to life.
Yet once again, our young warrior persevered! Since then, he has continued to improve and make great strides, gradually being weaned off the vent and various medications. Now he is breathing on his own with just a little support from low flow wall oxygen. He had a Gtube placed and a Nissen fundoplication surgery on November 4th to help with his eating struggles. He also had his bilateral inguinal hernias repaired and circumcision at the same time.
Every step of the way, we’ve been surrounded by love and support. Ryder’s grandparents have been a constant from the beginning and continue to be by our side as much as possible. Our community at home continues to follow his journey online, awaiting the day they finally get to meet him. We’ve also been amazed by the incredible organizations out there, like the Fore Hadley Foundation, without whom, we would have been lost in this journey. They helped us not only financially but also provided us with invaluable information and a network of supporters to carry us during difficult days.
We know Ryder has more battles ahead but we also know we will never be alone and he will be strong through it all.
As told by Leah Coonley aka “Mom”
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Alanna’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.