My daughter Maya, was born on May 1st with 2 heart defects. She had an interupted aortic arch and a large VSD. She had open heart surgery when she was 6 days old (so glad we live in Baltimore where we had the best doctor's at Johns Hopkins Hospital). Maya didn't get to come home until she was 5 weeks old. She's also diagnosed with DiGeorge Syndrome. After heart surgery she was having a very hard time swallowing so she was put on an NG tube and that is still how feed her liquids now. We are in the process of thinking about getting a G Tube because she has gotten too smart for the NG tube and pulls it out on a daily basis!
Maya means the world to me, just like I'm sure your children mean to you. These babies are so strong and pull through so much with so much strength. It blows my mind every time I look at my sweet girl and think about all that she's been through and all that she will have to go through in her life. DiGeorge Syndrome is very broad and we aren't sure yet what parts of it Maya will have, so it's just a waiting game right now.
She has made me look at life with new eyes. I appreciate every second that I have with her. I'm so glad I found this board. I hope to hear back from you if your child has any of Maya's health problems.
Hope to get to know all of you and hear about your stories.