Isn’t God amazing? Our little girl was diagnosed with a Tetralogy of Fallot at birth (along with Downs). At the time we didn’t know anything about Downs or heart conditions so it was all a big shock to us. We have had a similar experience – an outpouring of support and prayers by friends and family. It is very encouraging to know that other families have experienced some of the same emotions that we have – the fears about infection, of tet spells, etc. that others don’t really understand (can’t say how many times I get “don’t you think you’re being a bit overprotective?” from family members who just don’t understand the risks of infection). Our little girl had her surgery on June 23 and she has had a miraculous recovery – 6 days post op in the hospital (and we opted to stay an extra day “just in case”), and she is doing very well at home now. She is still on her meds, and still house-bound but hopefully we’ll be out and about (and off lasix) soon. Thanks for your encouraging story – I’ve linked to it from my blog AND my facebook page.

-Amelia
http://needlesandchard.blogspot.com

Reading your blog I see that you are trying to provide information for other families. WOuld you care to look at our website and see if you think it would be helpful and then perhaps link to it?

I sent you an email giving you our phone #. Please call! I would really love to talk with you more.

Thank you for not giving up on your precious baby girl. I really do know how difficult this whole situation is, and how hard it is to hang on to any hope.

I’m glad Matthew’s story can encourage you a little bit, and I would like to support you in any way I can. Please know that you, your family, and your little girl will be in our prayers!

We saw the Seattle perinatologists 2 times when I was pregnant with Matthew. We actually didn’t feel very comfortable with them. They were very competent medically, of course, but we felt like just another “case” while we were there. They offered and encouraged abortion as an option, and when my husband Aaron left the room for a moment, they were quick to remind me that it was “my body, my decision” and I shouldn’t let my dear husband “influence” me! When we refused the abortion, they offered “early induction” as an option, meaning they could induce labor before Matthew was at a viable age, and he would die almost immediately thereafter.

We transfered care to Spokane (Sacred Heart Children’s Hospital), and found their team (especially Dr. Anderson, also Dr. Burg, but they are all good) supportive, kind, empathetic, and every bit as competent medically as the Seattle team. Dr. Siwek did a fantastic job repairing Matthew’s heart surgically, and we will be forever indebted to him for that. The nurses and staff there were all incredibly kind and competent as well. It was nice to be in a Christian atmosphere and have the Center for Faith and Healing at a time like that, too.

Also, please know that even when Matthew wasn’t expected to live – even when I thought any day could be his last – I was so very grateful for the time we had with him. Even if he had only spent a few days or weeks with us, his life would have touched us and made us better people. Even if we would have lost him, I wouldn’t have changed a thing – I would still have gone through it all just to be able to hold him, even if it was just for a little while.

You will go through things that no parent should ever have to go through, and you will have to make decisions that no parent should ever have to make. But, just take things one day at a time – and just keep making the decisions that are right at each point in your journey. Right now, you have already made such a good decision in deciding to continue your pregnancy! All you can do is keep on doing what’s right for your little girl, and keep giving her the best chance you can.

My heart is with you. Please keep in touch.

Prayers,
Amy Vawter (Matthew’s mom)