We met with the surgeon this morning and he confirmed what everyone else had already told us. He put it this way - to do the 3 surgery series on a baby with JUST Hypoplastic Left Heart Syndrome is about a 90% chance of survival. Which is really good. This is what we anticipated coming down here. But after Evelyn was born they discovered 6 other major problems with her. Dr. Hanley said that doing the surgery on a baby with HLHS and just one of the other major problems she has brings the odds of survival down to 50/50. Which puts in perspective where Evelyn fits in. WAY below 50/50. With not one additional problem but six, he said he doubted she'd even make it out of surgery and if she did she would not leave the NICU most likely.
I never in my wildest dreams would have thought I'd make the choice we are making. But it is the best and really, only decision there is to make.
If the top surgeon - who by his own admission - says that he rarely turns families away from surgery says its not an option, then well, we sure don't want to do that! We are so glad we talked to him. We were leaning away from surgery anyway, so that was the confirmation we needed.
I guess it's illegal to transport a "dying person" as Evie is considered by the doctors, across state lines so our options were:
1. Unhook her here and "wait."
2. Get a medical transport to take her back to Boise, admit her to the NICU there and unhook her.
Our insurance doesn't cover this type of transport but God is so good to us, continuing to make our way smooth down here. One of the social workers got approval for Stanford to absorb the cost of the transport for us! So they are paying for it. We started crying and then the social worker started crying. God is good! Evelyn leaves today on her private jet - still on the medication that makes her stable, and we are just waiting to sign some papers before we hit the road!
Now we will get to see God do a miracle in Evelyn as we step out of the boat and onto the water by unhooking her. This is the perfect backdrop for a miracle and we will not stop believing! Please keep praying for a miracle for Evie!
Nothing is impossible with Jesus!
Lord, you are good and we put our baby girl, Evelyn, into Your hands. She is Yours. Please glorify Your name through her.