I decided to call a pediatric cardiologist in Anchorage that I had heard wonderful things about, and asked the receptionist if he or his partner could call me and give me more info on hlhs and what to expect. Less than 10 minutes later I got a phone call from the doctor and he talked to me for 40 minutes.
If the diagnosis stays the same and it is hlhs, since I'm having twins and they are normally born smaller than singletons, I would need to go to the best doctor I could on the west coast. I'm so thankful for that because I wanted the best for my baby. So when I have my appointment in two weeks with my doctor and the other pediatric cardiologist I can argue my point about needing to be referred to Dr. Hanley in California.
Knowing that if she really has hlhs that we will be in the care of one of the best pediatric surgeons in the country makes me feel a lot more hopeful that she will have a chance at a longer fuller life.
Now I just have to wait two more weeks. My poor daughter Olivia is getting tired of being stuck in the house all the time, as am I. I was told not to pick her up more than I need to and not to carry groceries or heavy things up and down the stairs. So I really can't do much other than hang out at home without help with my daughter. So needless to say we are both bored and she is constantly erring into stuff cause she isn't out and about like we normally would be.
I am continuing to keep the babies, you and all the rest of the family in my prayers. That is so awesome you were able to have a dr. call and talk to you!
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