Our journey...

Wednesday, May 15, 2013

Round 3

And...we passed! We have now cleared the hurdle of genetic testing. Aubree's heart defects were not caused by genetic factors but most likely just by random chance. The good news is there shouldn't be any issue other than her heart. The bad news is we still don't know a lot right now.

The specialist wants to see us next week, around 19.5 weeks. They will do another full checkup on her to make sure her growth is on-track, all other systems are growing & functioning fine, and to do another fetal heart echo. From there, we've been told we can get a referral to the Fetal Health Center at Children's Mercy. The specialist still seems to have a pretty grim opinion of Aubree's overall chance of success, but to be honest, he's not the pediatric cardiologist. I need to hear their opinion to see what we can do for her. And I am prepared to go to some other places to get third/fourth opinions as well. Not that I am looking for someone to tell me what I want to hear, but I need to make sure we've really pursued every avenue available to help her.

After my mini-meltdown yesterday, I am making myself stay away from Google. The good stories make me hopeful, and the sad stories make me terribly sad. I love numbers and statistics but even those are upsetting right now. So today I am telling myself that Aubree has a 0% chance if I just sit back and don't fight for one. DH and I are really her only advocates right now. And if we have to travel half-way across the country to get her to the place where she needs to be, then we will do it. And if we talk with the surgeons here and feel confident in their abilities, then we will stay.

1 comment:

spaghetti0625 said...

Come on travel half way across the country!!!! hahaha sorry...biased opinion again :)

Yes, stop Googling...both my doctor AND my husband had given me that rule when I first got prego. Even a good friend I work with...OMG, it's like she had Googledar on my work computer.anytime I googled anything, she was in my cube yelling at me! hahahaha. So I try to steer clear of it....it's hard, and I still sneak on but I've gotten better :)

I would do the same, get as many opinions as you can...it cannot hurt to see all your options on the table.