Connor James Loescher
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My son Connor was born on the hottest day of the summer on August 9th. I was on my way down to the shore to celebrate my younger brother's birthday when Connor decided he did not want to go to the shore; he wanted to come out and play. As soon as he was born we knew there was something wrong. He was missing his right eyelid, there were several skin tags around his ear and his face was severely askew. The doctor immediately diagnosed him with Treacher's Collins. I didn't quite understand why they wouldn't let me hold onto my baby a little longer. I was still reeling from what they were saying and from the traumatic experience of birth. The next day we were told that Connor actually had Golden-Har syndrome and a large hole in his heart (VSD) and would need open heart surgery. That Sunday Connor's dad and I transferred him to Children's Hospital of Philadelphia. A day shy of his two week birthday Connor had his first major surgery. This one was to correct his VSD and a coarctation. A week later we were expected to bring home soon, as his recovery was going amazingly well. On Sept. 4th that all changed when Connor had his first episode in which his sat's dropped low and he turned blue. He did that every day for almost a week, each one worse then the day before. Finally on Sept. 9th he needed compressions to be brought back. On Sept. 11th while the world watched in horror as the World Trade Center came tumbling down, I watched my one month old baby breathe thru a tube in his throat.
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Since that first month things have gotten much better. His third surgery was a week after his trache was placed. Connor's skin tags were removed, he was circumcised and he had his g-tube place. Now we were finally able to take all the tape off his face and actually see it!! Connor finally came home from the hospital on November 12th. He suffers from reflux and the hiccups, but other than that is enjoying being home. His new game right now is taking off his humdi-vent and handing it to whoever is holding him. He also enjoys entertaining us by wiping his own drool off his face!! We're getting ready for our first Christmas and also our next surgery in March when his doctor will correct the coloboma of his right eyelid. We'll update after that surgery. Wish us luck!!
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Please feel free to contact me at PeaceFrog08109@aol.com. I love talking about my baby!!
Laura
