So we ended up getting our appointment with CHOP, and it ended up being an all day event this past Thursday. We met with genetic counselors, they did an echo on the baby and then we had a 2.5 hr ultrasound (baby was stubborn!) followed by a meeting with 2 doctors, a head nurse, and a genetic counselor.
My nightmare came true when they said that his condition is worse than first thought- not only does baby dacky have fractures in all the bones of his arms and legs, but they are now seeing fractures in his ribs too.
This is extremely bad news as they aren't healing correctly and may limit his ability to breath on his own when he is born.
They believe he has type 2 O.I., not type 3 as first thought. Type 2 is lethal.
They are really pushing for the amnio but after speaking with a support group we found on facebook, both DH and I are still against the idea. They want to do the amnio because if it is confirmed type 2 then we'd have a natural delivery so I can "have the time with him while he's alive". If it's a severe type 3, then we'd continue with the planned c-section.
I feel like the amnio would confirm his death and I'm against the idea. Although type 2 is extremely severe, there are type 2ers who are alive.
The support group also has 20+ similar stories to this: they were told the worst news, recommended to terminate, trusted God and their gut and have beautiful children to show for it.
We refuse to give up.
We're talking to Dupont Children's hospital now to see about options there. Although I think we'll be able to deliver at CHOP, I'm afraid they won't fight for him like they need to.
Anyway, on a related note, if you have any yellow in your closet, wear it tomorrow, please? May 6 is known as Wishbone Day and is an international day of awareness of O.I.. Spread the word. If you do wear yellow, please take a picture and send it my way. I can pm you my email if you need it.
Our baby will live. We're determined for that. We plan to make a scrapbook of all our friends and family around the world who send us pictures. We want him to know that even before he came into this world, he was loved and supported by many.
Thanks ladies.