Hi Catherine,
I just came across your post on the CHD website. I don't see a reply to your post here on the website, but I hope you have since been able to get information that would help you!
I went to the website in search of answers for my sister who was just diagnosed w/Tetralogy of Fallot at one of her ultrasound checkups-- she is having a very difficult time with it all, and I don't know how to help her. But in my search to help her, I've come across some helpful message boards on www.mothering.com, and www.babycenter.com websites. It seems that there are more Q&A's than listed on this website, and some are very specific to the type of heart defect, treatment options, etc. The babycenter website has over 50 pages of message boards, and you can search for something relating to your specific situation.
Good luck on your your journey--- it sounds like there are many more out there who have traveled similar paths-- hopefully you and my sister could connect or find strength from that!
Blessings to you and your baby,
Donna
dmariemc@hotmail.com