I remember the next few hours like it were yesterday. Its like our life went from whirl wind to slow motion. Wesley finally made his entrance into the world and we were elated with excitement. I heard him crying, I heard the nurses talking, doctors talking. Next the neonatoligist is right next to me with Wesley swaddled warmly in a blanket. He gently releases Wesley into my arms and at the same time starts talking about facial features, other characteristics and Trisomy 21.....Down syndrome. I heard the words but they didn't register. I knew what that meant but for some reason my brain didn't connect the dots. It wasn't until that night, when the neonatoligist and cardiologist and listed all the issues Wesley was facing and asked if we were going to keep him, that it all everything really set in for us. Of course we were going to keep him. He was our child for heavens sakes!!! But looking back now I guess it would be a logical question to ask, just not logical to me. Wesley was facing three separate heart defects as well as an intestinal defect. The intestinal defect know as a duodenal atresia would need to repaired within days of his birth. Now I know this congenital defect is present in about 8% of all infants with Down syndrome. At 9 days old they preformed the surgery to repair the duodenal atresia and insert a feeding tube in his stomach. After about 3 hours the surgeon came to us to tell us the surgery was a success but when they opened Wesley up they found so much wrong. They called is intestinal malrotaion. Everything was all mixed up. His appendix was on the wrong side so they removed. His pancreas was blocking his bowl 90% to they moved that around too. They completed the repair of the duodenal atresia and placed the feeding tube in his stomach. He recovered and slowly he got stronger and the tubes coming out of his body seem to be fewer and fewer. At about 19 days old they gave him a medication to repair one of the 3 heart defects Wesley had. It was called a Patent Ductus Arterisus (PDA). It is common for the duct to be open but usually closes pretty quickly after birth. Well Wesley's didn't. But the medication they gave him took care of that. We had many more minor hiccups while we were in the Neonatal Intensive Care Unit (NICU) but Wesley made tremendous progress. At a month and three days he was finally released to come home. I thought NICU was hectic.....all of the appointments to follow were insane. But we chugged right along with minor setbacks here and there. But Wesley steadily grew and got stronger. At 5 months old Wesley underwent his open heart surgery to repair the second and most serious heart defect, his Atrioventricular Canal Defect (AV Canal). AV Canal is present in about 45% of infants with Down syndrome. He did remarkable through the surgery and was out of the hospital within 7 days! To date the scariest surgery we have been through. After about 2 months of taking it easy we started Wesley on Physical, Occupational, and Speech therapy. Three days a week for an hour and a half we played, bribed, and ate with Wesley in his therapy sessions. In all it was a rocky beginning and still don't know how I made it past the first year with my sanity in tact. But with ALOT of family support and prayer we all made it! Sure there were days I wasn't sure if we were going to make it! I had my moments of sadness. But I wouldn't change it for the world! Wesley is light of our lives and wouldn't be complete without it!!
