James

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When I was 31 weeks pregnant, I went in for a routine ultrasound with a new ob. They brought me back to a waiting room where the doctor came in to talk to me. They saw some abnormalities with James. They couldn't find his left kidney, some abnormalities with his heart, and he appeared to have clubbed feet. For the next 8 weeks I went in every week to keep an eye on his heart. I went into the University of Iowa at 39 weeks for a scheduled induction. He came out a fighter weighing at 6lbs 7oz. For the next 2 months that was our home. James was diagnosed with digeorge syndrome, CHD, VSD, type b interrupted aortic arch, solo right kidney, and bilateral club foot. At 6 days old we were scheduled to go in and repair his vsd and arch, his doctors were concerned though that his kidney would not survive such a heavy procedure, so they went in for a temporary fix. They went in and placed pulmonary bands, and a PDA stent. At 2 weeks they put in a gtube. He had difficulties feeding and tolerating feeds. He continued to slowly thrive and was finally able to take him home January 20, 2016. The plan was to go to regular check ups, giving him a chance to grow and get stronger until his next surgery to repair everything. In may they did a we went to the Cath Lab for a procedure so his surgeon could get a clear picture on everything. That's when they discovered he had pulmonary hypertension in his left lung, leaving it a more difficult surgery. June 9, 2016 we brought him in for open heart reconstructive surgery, 7 hours it took. 11 days later, he was back home continuing to surpass everyone's expectations. A month later we started the process on his feet. 10 weeks of casting and a tendonopomy, followed by braces on for 23 hours a day. Today James is almost 19 months old. He is crawling, standing, climbing, and walking with little help. He has been completely off tube feeding since December of 2016. He is tiny, in 9 months clothing and 18 lbs, but he continues to grow and thrive!

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