Dylan, born 2005

Dylan was born August 10, 2005 on his daddy's birthday weighing in at 10 pounds 2 ounces! We didn't know he was going to be so big or that he was going to born with congenital heart defects. A few hours after he was born, he had trouble breathing and was taken to the special nursery and a few hour after that he was flown to Children's National Medical Center in Washington, DC. It's crazy how the best day of your life can also become your worst.

 

Dylan had his first surgery, PA banding and COA repair at one week old. The day after surgery they had to re-operate and fix the band because it slipped. Then a week after these surgeries, they had to re-operate again and tighten the band. Dylan had three heart surgeries in his first two weeks of life! I held him the first time at seven weeks old.

 

After the surgeries were over, they tried time and time again to get Dylan off the ventilator. He just couldn't do it. The doctors weren't sure why but he just couldn't do it. Dylan fought one infection after another and had unexplained high fevers for months and months. Our only choice was to wait in the ICU until Dylan was old enough for the Glenn and the DKS.

 

At three and half months, Dylan was extubated. We thought Dylan would make it through and be able to go home until the next surgery but for some reason, he couldn't and was intubated. Although it was quite early for the Glenn, the doctors decided that it was time.

 

The surgery went well but Dylan had some problems. His sats were extremely low and they did not know if they were going to go up. Amazingly, Dylan pulled through once again. They attempted to extubate him twice with no luck. The third time they tried, it finally worked! Dylan could breath on his own.

 

Altogether Dylan was ventilated for almost four months. He developed vocal cord paralysis, a seizure disorder and periventricular leukomalacia during this time. We finally got to bring our baby home at 5 1/2 months old. It's amazing how far he has come in the last few months. He is fed through a PEG but he is learning to eat on his own. He is rolling over and just enjoying being a baby!

 

Dylan had to have a catheterization to balloon some scar tissue where they did the DKS. The ballooning didn't work and Dylan will have to have another surgery. We were shocked to find this out. We though we had time before we had to think about another surgery. We are really going to try not to let the thought of upcoming surgery take over our lives and enjoy the summer and his first birthday!

 

Story by Dylan's mom, Kristin - Maryland