HOPERetrun to 22q Stories
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Hope was very anxious to come. They had stopped my labor for almost two weeks when she was taken by emergency c-section on the first day of my 35th week. I had “genetic” testing done when I was pregnant and was told there were no problems or complications. She couldn’t hold her own body temperature that night and was taken to the NICO of Phoenixville Hospital. The next day they said she was refluxing through her nose and the valve in her heart remained opened. That day consisted of tests and not many answers. On the second day, they recommended she be transported directly to CHOP and that is where the miracles happened. At first glance, Dr. Zackai stated she believed Hope had 22q deletion syndrome and I was stunned because of the genetic testing…which later I was told it does not pick up MANY genetic disorders. Hope was treated for hypocalcemia, her refluxing was so bad that she had a feeding tube inserted directly into her stomach which is now a mic-key button, and she had a nissan surgery to prevent her from reluxing or vomiting since she was aspirating. She has an ASD which was 7 mils at birth which is now down to just under 3 mils and now only sees the cardiologist once a year. She sees GI, Endocrinology, Immunology, and Audiology. Most of her appointments are just checkups. She was born April 6th, 2009 and was brought home from CHOP April 29, 2009. It was truly the happiest day of my life. She is such a sweetheart. We see a lot of specialists at CHOP and they couldn’t be better! We are working on her developmental skills with physical therapy, a special instructor, and a speech therapist all through Early Intervention. We are also now working on baby signs with her to alleviate the frustration that she may have from talking late. I find it a blessing to have her in my life. She has taught us a lot! Some people say that she was sent to us because we can “save” her and we have a lot to offer her. I believe that she was sent to us to “save” US because she has a lot to offer us! Ironically, we picked her name HOPE December 22, 2008 when we were told that she was a girl and now it seems to just fit! Hope, we love you dearly. Love, Mommy and Daddy!