My husband and I had a great meeting yesterday with a genetics MD. She suggested that we schedule a consult with a perinatal MD who can then write out explicit instructions for my OB-GYN regarding my labor and delivery. That way, she might pay attention!!

Thanks for your information. All of this info from everyone is going to make things a lot easier when the baby comes! We have a consult with a pediatric dermatologist at the beginning of March as well which should be very helpful.