Hello All! My baby girl was born September 8th at 30 weeks 3 days via C-section. I spent 5 weeks in the hospital on bedrest before having her. She was diagnosed at birth with Axenfeld-Rieger's Syndrome. I have it and knew there was a 50% chance of passing it on. Unfortunately it seems like she has it worse out of anyone in my family. She was diagnosed at 22 weeks gestation with a mild pulmonary valve stenosis. She spent 54 days in the NICU and was home 2 weeks before having heart surgery to correct the stenosis. She has Glaucoma and had her first eye surgery in January, her second eye surgery is on the 30th to try to get the pressures down and under control. She has a mild hearing loss and will be fitted for hearing aids once we get her ear infections under control. She'll be going to an ENT to get tubes in her ears. She currently has a G-tube and is not allowed anything by mouth because she aspirates it. They are hoping that she'll grow out of it now that her body is getting the proper nutrition without spending all her energy eating. Feeding clinic starts mid August! A also goes to PT once a week and since getting her G-tube is doing awesome and catching up! Thanks for reading!
Welcome! Both of my boys have a genetic condition they inherited from me. I didn't know i was a carrier until my first son was diagnosed.
To my boys: I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
Nate has mild-moderate hearing levels and wears aids and will be getting his third tube August 5th! (along with blood vessel cauterization in his nose-Thank God!)
Re: Intro
Nate has mild-moderate hearing levels and wears aids and will be getting his third tube August 5th! (along with blood vessel cauterization in his nose-Thank God!)