Adelyn Michele Drake was born on November 8, 2012 by emergency C-section and we were told she had low oxygen. She was monitored closely for a couple hours where she was determined to be okay and for the next 24 hours we thought we had a very healthy, beautiful baby girl. At her 24 hour check-up it was determined that her oxygen was again running low and she had a very significant heart murmur and would need to be transferred immediately to Dayton Children’s Hospital. While at Dayton Children’s she had numerous test completed and saw many doctors and it was determined that she had a combination of congenital defects, Tetralogy of Fallot, Partial Anomalous Pulmonary Venus Return, malformation of the intestine, and tracheomalacia. She stayed in the NICU at Dayton Children’s for 2 weeks while she grew stronger and we were fortunate to be able to stay at the Ronald McDonald House the entire time which is just across the street. While we were staying at the Ronald McDonald House they treated us like family, there were always meals donated, and it was a very warm environment which was nice to have while dealing with our newborn being in the hospital and I was still recovering from a c-section.
Adelyn had open heart surgery at Nationwide Children's Hospital, in Columbus, on April 12, 2013 to repair the TOF and PAPVR. After heart surgery she had some major complications and the typical 2 weeks stay quickly turned into a 2 month stay. She had kidney failure where she put on a lot of fluid and had to have a stomach drain (a form of dialysis), she struggled with blood pressure and irregular heart rhythms, and then got a stress ulcer, and her tracheomalacia flared up really bad from being intubated for so long. When we thought she was doing well she then went into withdraw from pain and sedation meds which proved to be a very delicate process to reverse. Again the entire time Adelyn was at Nationwide Children’s Hospital we were able to stay at the Ronald McDonald House across the street, our new home away from home.
We finally were able to come home from the hospital on June 2, 2013 and everything seemed to be going well. We were regularly going to the cardiologist and occupational therapy for feedings. Then on June 29, 2013, out of the blue and very quickly with both her parents with her, her heart decided it was too tired from working extra hard and it stopped. We miss her terribly but also know she is in a better place with a perfect heart and body watching over us every day. We now honor her memory by having Adelyn’s Rainbow Run on the last Saturday of June every year, to give back to the Ronald McDonald Houses of Dayton who have treated us like family.
Adelyn had open heart surgery at Nationwide Children's Hospital, in Columbus, on April 12, 2013 to repair the TOF and PAPVR. After heart surgery she had some major complications and the typical 2 weeks stay quickly turned into a 2 month stay. She had kidney failure where she put on a lot of fluid and had to have a stomach drain (a form of dialysis), she struggled with blood pressure and irregular heart rhythms, and then got a stress ulcer, and her tracheomalacia flared up really bad from being intubated for so long. When we thought she was doing well she then went into withdraw from pain and sedation meds which proved to be a very delicate process to reverse. Again the entire time Adelyn was at Nationwide Children’s Hospital we were able to stay at the Ronald McDonald House across the street, our new home away from home.
We finally were able to come home from the hospital on June 2, 2013 and everything seemed to be going well. We were regularly going to the cardiologist and occupational therapy for feedings. Then on June 29, 2013, out of the blue and very quickly with both her parents with her, her heart decided it was too tired from working extra hard and it stopped. We miss her terribly but also know she is in a better place with a perfect heart and body watching over us every day. We now honor her memory by having Adelyn’s Rainbow Run on the last Saturday of June every year, to give back to the Ronald McDonald Houses of Dayton who have treated us like family.