Info from Stanford Surgeon

This is probably going to be boring information for everyone to read but it is exciting for us! 

Dr. Frank Hanley comes very highly recommended by families all over the country. He is known for his work with newborns with complex heart defects. He called me today and we had a great conversation. I know I said was going to be done with asking for statistics but I couldn't help myself! (I only asked him because he is a "guru" in this field.) He said he thinks her chances of making it are much higher than what Dr. Shanti said. He didn't give me number but it definitely gave me more hope and the strength to keep fighting :) 

I also couldn't help myself and asked him the question that keeps lingering in my mind...if it's something that I might have done to have caused this (aka "Mother's Guilt.") Dr. Hanley said absolutely not. He said there is no research to indicate anything and also said that is why we always hear the cliche statement "The Miracle of a Healthy Birth." He said the fact that there are so many millions of cells dividing when a baby is developing, it is truly, truly amazing that so many babies are born healthy. That eased my mind :)

Dr. Hanley said that he has seen very similar cases but not our baby's combination of defects. (UGH! It never gets easier to hear how rare her heart condition is!)  I told him the plans that we have received so far from the University and Children's.

The University wants to see me every week and then do a c-section at 34 weeks. Children's wants to see me every 4 weeks and wait as long as possible to deliver and NOT do a c-section. I also told him that the University brought up steroids and asked for his thoughts. 

Dr. Hanley said we should definitely continue to be seen often to monitor how the baby is doing. He agrees with Children's with regard to letting her develop as long as she can in utero so that she is as big and strong as possible in order to tolerate surgeries (vs delivering early at 34 wks). He also said to definitely hold off on the steroids until we get closer to delivery.

Dr. Hanley said that some families fly out to meet with him. I told him that we would like to do that but maybe when we get a little bit closer. He also said that if we chose to go with him/Stanford that he would want us to come out there as early as a month before hand so their high risk OB team could monitor the baby and get to know her better. 

We are still waiting to hear from Michigan and Mayo. Once we hear from them, Dan and I will have a lot to decide. I initially thought, sure, we'll do it somewhere else but didn't even consider the fact that I would have to go there early and deliver. So, we have a lot to consider but we will do ANYTHING that gives her the best shot at successful surgeries!!