Meet Noah
NOAH’S STORY
Noah was diagnosed with a severe left-sided Congenital Diaphragmatic Hernia (LCDH) at the 20 week ultrasound. We initially met with doctors in Chicago but didn't feel comfortable with the medical care we found. Thankfully, we got connected with Johns Hopkins in St. Petersburg, Florida and found Dr. Kays and his team. After a phone call with Dr. Kays and Joy, we decided St. Petersburg was the right choice. We temporarily relocated with our two year old, Luke, and Trish’s mom, Marcie. We packed up and left Chicago right after Thanksgiving.
Once we arrived in St. Petersburg, we had weekly appointments at Johns Hopkins and had an in-person meeting with Dr. Kays and Joy. We had planned to welcome Noah by c-section on December 30th. However, our boy had other plans and Trish's water broke on Christmas Eve! The doctors were ready though and he was delivered by c-section around 1:30 PM, weighing just over 7 pounds. Christmas Eve will always be extra special for us!
Noah initially fought for a bit but was put on ECMO around 10 PM that evening. While we had hoped to avoid ECMO, we knew from our conversation with Dr. Kays that he had a 95% of needing it. We trusted Dr. Kays and his team's expertise using it. Noah had his repair done on December 26th which went well but confirmed that he was missing 90% of his diaphragm.
Noah did generally well on ECMO but there were some challenges along the way. After 15 days, he was separated from the ECMO machine and just put on a ventilator. He was then weaned off the ventilator after around two weeks and is now working on feeds. We are so proud of our little guy!
To follow Noah's journey further, please visit https://www.caringbridge.org/site/45ef1cea-b0cd-11ef-b0af-dd43ab46351c. We are very thankful for the “Fore Hadley Angels in the NICU” grant and appreciate all the love and support.
As told to Fore Hadley by Matt Davis aka “Dad”
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 Caleb’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.