Hi lisa my name is amy and i have a 2yr daughter who was born 1 month spremature and at 1 day old she had open hear operation
and i couldnt be with ehr becuase i had to have a csection due to bad labor., Then 2 weeks later we find out she had a soft palate which meant she could swallow her milk so they ahd to put a gtube in her belly andtht is how i fed her until she was 11mos old. She had her first cleft operation this time lastyear and it went terribel she ended up having 2 more operations and in a coma for 3 wks on a ventulator and had 5 blood transfusion my daughter has what they call (digeorge Syndrome,vcfs) and now has also been diagnosed with hemophilia and has to have blood work and treatment doen every few months we are waiting for another operation but can have it until cleard with hematology. Tomarrow she goes to the cardiologists for a checkup becaus e 2 wks ago she sturned blue while napping and had a fever of 104.3 she does however feed herself and just learned how to walk by herself and talk some but signs for the most part. If you would like to keep updated on her here is her website.
www.caringbridge.com/de/harleysdigeorgepage

gen, the thread is 5 years old. i saw it too because faith was a preemie and i was hoping to connect. the link on her sig takes you to a site for her daughter who was born in 2001. it details many many issues and surgeries. it is heartbreaking. she is a really cute kid too. the last entry is almost a year old.... i dont know... but i clicked out with tears in my eyes.