The decision has been not to do surgery.
Yes, I realize we were told this back in August and then were thrown into limbo in September as we waited to hear from everyone and then in November were told "probably soon." It's been a roller coaster of emotion for me, too. Getting myself emotionally and mentally prepared to take my baby daughter half way across the country so a doctor I've never met can cut open her chest is not easy. And I've done it twice this year.
Dr. S heard from the doctor at Stanford, Dr. H, and he said he wouldn't touch Eden. Her sats are great, she's growing well, she shows no symptoms of any negative sort. According to Dr. S, Stanford is the hospital that does this heart the best, so she's giving his opinion a little more weight than the others. Dr. F in Dallas doesn't feel that her VSD (hole in the bottom) is big enough to properly do the double switch operation, so were he to repair her heart, it would involve a pacemaker, which would increase the likelihood of a heart transplant later in life and would almost definitely lead to heart block. As great as heart transplants are for people who need them, I really don't want Eden to be one of those people. Dr. B at Columbia thinks the VSD IS big enough and says he could do the surgery without heart block becoming an issue later on. Dr. S agrees that the VSD isn't big enough, so she was glad to hear that Dr. H agreed with her assessment.
As you can see, this kind of heart if controversial. Dr. S said you could show the same heart to three cardiologists and three cardio-thoracic surgeons and get 6 different opinions. Which is not terribly helpful to the worried parents.
Dr. S was brutally honest and said that she has not seen a lot of good long term outcomes from doing surgery to repair hearts like this on babies. They generally do much better when they're older, so obviously I want to wait even more now. Like, maybe 50 or 60 years. If we ever do it.
So yes, more wait and see. Wait and see if she gets bluer, wait and see if she continues to grow and hit her developmental milestones in an appropriate time frame, wait and see if she starts to get tired more easily and more quickly. All those will be signs that the right side of her heart is struggling and weakening and that will be the go ahead for the doctors to once again evaluate updated scans and tests and determine the best course of action.
Unfortunately, we have no idea when or if this would happen. Some people live their whole lives with no real problems, some start experiencing issues in their 40's, some in their 20's, some sooner. We will have to watch her her whole life. I really hope she's up for the constant scrutiny.
We'll see Dr. S again a couple of weeks after Eden's first birthday and then not again until June. We'll go to an every four month schedule instead of a monthly schedule and will go to Dallas for a sedated Echo once a year.
As for Eden's ptosis, we were thinking she'd have surgery before her June 2016 appointment. If and when we do something about that, Dr. S wants us to go to Children's for it. Currently, she's doing fine. Her vision seems to be just fine but if it gets to the point that it needs correcting surgically, they don't want surgeons in Abilene to touch her. We may go ahead and get a referral to a pediatric ophthalmologist at Children's and have them look at her next year, but we may not. I'm really hoping it's simply a cosmetic thing that she can live with for a long time.
This, I'm choosing to believe, is great news. I'm happy with it. I do see the side of "let's do surgery before she really starts to NEED it," but at the same time, I really don't want my daughter's chest to be cut open. Like, I can't even begin to describe how much I don't want that.
So Merry Christmas to everyone! It'll definitely be a happy one around here without this awful thing hanging over our heads. And she's such a happy girl, it's hard to be in a bad mood around her. She has the best smiles.
Waiting for the Christmas program at church.
Smiling at Mommy