We were accepted into Shriner's Children's Hospital of Philly and will be there for the first separation surgery November 15th (Monday). It is very nerve wrecking as a parent for my then 6 month old to go under anesthesia for 1.5 hours. I know it will be fine and my mom is coming down to Philly with me since only one parent can spend night, that will be Tim and we will stay nearby in a hotel.
What else do we know? It was not ABS (amniotic band syndrome) or genetic. It happens more in boys, usually more common in feet. The missing bones is rarer, we were the lucky ones. I will keep everyone updated as we learn more. Thanks everyone for their thoughts this far.