Thank you Rocketcitymama, I went on your blog and read through it. Wow, such an amazing journey with such a beautiful girl. How is she doing now? It sounds like she was thriving in your blog. Your journey started out so crazy. I guess I'm grateful that we found out 1/2 way through my pregnancy so we have time to process everything and prepare. Although it has been so emotional and hard, I can't imagine finding out just after birth and having to process while recovering
I hate the waiting and not knowing my baby's prognosis aspect of this condition. I've found some cases of myelocystocele on here and the stories seem promising, so I'm hopeful. I just don't know for sure if our baby even has myelocystocele. The other neurosurgeon seems to believe it is a meningocele, with no neural involvement but that seems too good to be true. We have about 2 more months or so before we'll know anything.