Summary of the Past 2 Years.

This is the first time I have ever did one of these for Jordan, so here it goes. Jordan was born on May 21st, 2008 at St. Joesph East in Lexington, Kentucky. My pregnancy was pretty normal and uneventful aside from the gestational diabetes. At 35 weeks, I was told that he was too small for his gestation age, therefore I was sent to Dr. Berry Campbell, whom is a high risk OB in Lexington. I was immediately sent into the OR the next morning to undergo and emergency cecerean section due to Jordan not growing.
I had him, and the first time I laid my eyes on him I knew something was wrong. He was so tiny, 3lbs and 5 oz. to be exact, and wasn't crying whatsoever. At the time I wasn't very scared, but I didn't know what I know now. He was immediately transferred to the University of Kentucky Neonatal Intensive Care Unit. There, he was placed on life support and was for a week. Along with a nasal gastric tube, heart and oxygen monitors, he also had to wear an oxygen canula. He has agenesis of corpus calossum, VSD, aeortic and pulmonary stenosis, Pierre Robin sequence, Cleft Palate, low muscle tone, reflux, asthma, difficulty feeding.
After a short, but long 43 day stay, he was finally allowed to go home, but only with the equipment and attachments I mentioned above. Not to mention he was only 4 pounds and very fragile. The thoughts of reality never really went through my head. All I was thinking at that time was, " I can't wait to take him home for the first time and let everyone see him!" The thought of denial or anger never crossed my mind.
After 14 days of trying to get adjusted to having not only my first baby at home, also adjusting to him being a sick baby. Everyday was chaos but we loved everyday of it. Until one night he seized and stopped breathing. This was the first time he did that, therefore we were all terrified. We rushed him to the Hazard Emergency Dept. as he kept having aponeic episodes and he would turn blue. I was in somewhat of a state of shock I guess I could say. Intubation was attempted two times and both were failures. He was flown to University of Kentucky Pediatric Intensive Care Unit where he was immediately placed on the vent following cardiac arrest. He was there for about two months and was trached.
Since then, he has spent about 9 months on and off at Cincinnati Children's. He was diagnosed at 4 months old with 1q43 Deletion. It was a very rare disorder that approximatley only 37 people have ever been diagnosed with this. The prognosis is a mystery. He is completely G-Tube fed and struggles with Pneumonia almost everyday of his life.
Although he cannot speak, walk, crawl, eat or do anything that a normal 2 year old does for that matter, he has always been happy no matter what. Everyday I see this big smile on his face that makes everything else fade in the distance. The hospital has become our second home these past two years. We are traveling this journey with Jordan, and battling everyday of his life. We will be here til the bitter end.