NICHOLASRetrun to 22q Stories
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Our son Nicholas was born almost 4 weeks ago. We already had 3 children, and we were not planning on having any more. Then unexpectedly we found out we were having one more. Nicholas was born at 10:08 a.m. on the 11 year anniversary of my father’s passing. later that night the nurses found that he was breathing too rapidly, which prompted an exam by the Neonatologist. He was taken down to NICU and the next day it was determined he has AVSD. After consulting with the cardiologist we were thankful to find out that the AVSD was fixable and he would have a normal life after surgery. Surgery is to take place between 3-6 months of age. A few days later in the NICU he started having uncontrollable twitching on his left side. That lead to testing his calcium levels which came back extremely low. His doctors then started to suspect DiGeorge Syndrome. Test results came back positive for 22q. Nicholas is currently still in NICU, and we are not sure when he is coming home. Most times he is not able to bottle feed due to his breathing being to rapid, and is fed through a NG tube. He is having trouble keeping his food down, and his doctors are not sure if it is from his medications or the 22q. His breathing has also not improved, which has the doctors concerned. Tests on his immune system are still being done. At this point we are not sure when he will come home. There has been a lot of “How did this happen?” “Did we do something wrong?” I’ve realized that beating ourselves up over this is not going to help our son out. So, even though we do not have many answers at this time on his prognosis we have to try to stay positive. He has been so strong and so good natured through this whole ordeal with all the blood draws and other tests that have been done on him. And there are more to come. As young as he is Nicholas is truly my little hero. It breaks my heart to see him have to go through all of this, but I know that I need to be strong for him.