Echo Went Well

Boy, I was nervous! But the echo went fine. Her numbers didn't change. Surgery is planned for next Monday. In preparation for surgery, they're putting Bailey on a heprin drip so they can better control the thinning of her blood as the surgery date approaches - they don't want it to be too thin for surgery. And they stopped a couple of her medicines that she was on in preparation for a transplant (cellcept and acyclovir). They're leaving the VAD at a rate of 30 until Sunday when they'll increase it for surgery. Dr. T says he'll feel better about taking the Berlin Heart out having been at a low, low rate for about 10 days by then. And she's on a low-sodium diet for now just to avoid any unnecessary fluid retention. I think that pretty much does it for the technical stuff.

Now, for the rest. Can you believe it?! We're still pinching ourselves. I just can't stop thinking about everything. I am so full of energy that I want to run around the building. Then, I think about how we're not home yet. We've still got quite a bit to go through until we get to leave and that's kind of scary - another major surgery. I just cried and cried in the shower yesterday. I was thinking about how it was a little frustrating to have the problem with the antibodies and antigens - how it made it difficult to find a match - but if it wasn't for that, and if it wasn't for the doctors not taking any chances on finding anything less than a perfect match, she might have received a heart. And, that would have been fine - we would have celebrated that - but being able to step back and see the whole picture, it's pretty amazing how God orchestrates things, isn't it?! I've been praying all along that God would just heal her heart, but I don't know that I really believed it would happen. I'm so grateful that I'm not the one running this world and that God just takes control when he needs to. That Footprints poem has more meaning now that it ever has in the past. You guys keep commenting on how we've done an incredible job staying positive and how we're amazing and inspiring, etc., and we truly appreciate those thoughts, but I can tell you without a doubt that these are times when there is only one set of footprints in the sand . . . and they're not mine!

The girls have had fun today. They've been playing limbo with a 12-foot long strand of rubber bands; they've been working on choreographing another dance; (Yeah!!! If I hear that other song one more time, I think I'll . . . just cry.); the socks are dry now, so we're going to model them later tonight. I'll take pictures so you can see their handiwork.

Thank you Nancy D. for the tin of goodies and the drinks! We brought the celebratory non-alcoholic champaign here to the hospital. We opened a bottle last night for the night shift and a bottle today for the day shift and the camera crew. Everyone here is so excited for us! We're definitely celebrating going home very soon.

Dr. T and Bailey had another water fight today. The Berlin Heart would have come out of it completely unscathed had it not been for Dr. T's bad aim! He was a little worried that he might have got it wet but was more disappointed when he found the water landed mostly in his stash of M&M's.

Congrats, Dane, on going home today! We're so glad your surgery went well and you are able to sleep in your own bed tonight. Take care, sweetheart, and hug your mommy and daddy for us!

I dreamed last night that I found a button on the bench that pulls out into my bed. I pushed the button, and it automatically folded out into this huge, fluffy, king-size bed that took up most of the area in the room. It was so nice! I was just disappointed that it took 5 months to find it!

Hope everyone is having a good summer. It looks like we might make it home in time to enjoy a little of it ourselves!

Love you all,
Angie