KYLIERetrun to 22q Stories
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Kylie was born Sept. 25 2008. It was the best day of our lives!! She got a thumbs up from all the doctors for being healthy. Shortly after she was born, we noticed her hands and feet were turning blue and she would not eat. The nurses told us just to keep trying to feed her and this is common. Being a first time parent, we had no idea that something terrible was wrong. The next day, the nurse came in and took Kylie from our room saying they are doing rounds in the nursery and Kylie’s turn was coming up. About an hour later the ped came in and said that she heard a murmur and she was going to the NICU for an ECO. The Cardiologist came up to talk to us and told us that she would have to have open heart surgery right away. She had a VSD and an interrupted aortic arch and she was being transferred down to Children’s Memorial Hospital in Chicago. Right away our world came tumbling down. We went from being on this high from giving birth to the child that we were so truly blessed with to having her taken away and hook up to tubes and machines. We drove down to Children’s and spent most of the night there. The next morning the Dr. came to talk to us and told us that she might have something called 22q11 or DiGeorge because the heart condition that she had was common in children with this syndrome. We never even heard of this. A week later, F.I.S.H test confirmed that she indeed had 22q11. Days went by after her surgery and she was doing great, but we were getting hit with all the stuff that was not right with her. Low calcium, low immune system, not feeding and she would need a tube, vocal cords were paralyzed due to intubating, aspirating on liquids. Alot to take in at once! We finally took her home when she was 3 1/2 weeks old. From the day we got her home, she has shown us that she is a fighter! Her vocal cords are fully healed and she is a loud one!! Her feeding tube was out within 24 hours of getting her home and has not needed it to be put back in. She was off all medication at 6 months including calcium which they said she would be on for the rest of her life. Her immune system has been built up and she was even allowed to get live vaccinations. She has hit all her mildstones on time and is doing great! She is such a strong and smart lil girl, she teaches me something new every single day. We have follow up appointments every 6 months and we leave with an A+. We love her with all our heart and we would no t change ANYTHING about her. She is truely a blessing!!