Tuesday, July 19, 2005

The Night Went Well

Bailey had a great night, and doing even better today. They're slowing down a bit on their projection for going back to the Heart Center today (maybe tomorrow) - they're still working with her medication to find the right balance. She's also not been able to keep drinks down, so she's still on ice chips - which makes her very irritable, she wants a tall glass of ice water!

Today's a day when we need to focus on the overall picture and let the doctors worry about the details. We end up staring at that yellow number on the monitor (the PA pressure) like a deer caught in the headlights, and that's just crazy, because that number is bouncing all over the place right now. But the doctors are doing a great job of popping in and reassuring us how well she's doing and that she's "remarkable".

She's falling in and out of sleep quite a bit, but seems to be resting well. She likes to sleep holding her cup of ice chips. I try to pry it away and she feels it move and wakes right up. (Reminds me of when she was a baby and trying to put her in her crib at night - I would rock her and rock her and rock her before she was completely sound asleep and she would still wake right back up as soon as her little feet touched the crib mattress.)

Guess who came to visit her last night about 10:00? Jeff Gordon! He was here most of the day yesterday shooting a promotional spot for the Riley Christmas stuff, and he stopped in ICU to talk with Bailey for a minute before he left. He was so nice. Scott told him that he was sorry for the race on Sunday, and he just shrugged it off and said, "Hey, that's nothing. This right here is what it's all about." He was so happy for us that the day went so well. He signed a couple things for her and let us take his picture with her. He told Bailey, "I know you don't feel very good, but can you give me a little smile for the picture, Bailey?" And she gave him a big smile. And, the best thing is, she even remembers it today!

I'm still just speechless and stunned at this script that God has written. This is just huge for all of us and for the medical world. Dr. T said that there's nothing that a transplant would help right now since her heart is working so well. I find myself just giving thanks to God but not being able to go beyond, "Thank you, God!" Just where do we begin in thanking God for such an incredible miracle? We had no guarantees of any kind going into this "adventure", and God ends up dumping better than we could ask for right in our laps. I am just so grateful that I just fall on my knees and cry.

Thank you, God, for every single day that we get.

Love you all,
Angie

7 Comments:

Blogger carol said...

Hi Bailey and Angie! Well, once again, "Angel," you have proven yourself to be a real fighter and winner against all odds! My heart is so full of thanks and joy today for what God has given us! This whole adventure has built the faith of countless hundreds of people, I'm sure, and everyone who has been aware of it has definitely improved their prayer life. Your story has touched so many people and brought hope into the lives of people we will probably never even know about! What an awesome God and what an awesome team at Riley! Love you both so much and hope you can gradually relax enough to get the much needed rest that you both need! I'm so excited, Bailey! Just think, in a couple weeks you will be on your way home, with your own heart and no restrictions! How cool is that? See you soon! Grandma Carol (and of course, Papa! He sends his love and a big hug too!)

2:04 PM  
Anonymous Anonymous said...

Angie,
You don't know me from Adam...but I can not tell you how much you and your daughter have affected me.
I am sitting here with tears in my eyes. Our God is wonderful! He has plans for your daughter, I will probably never know what it is that he has in mind for her, but I know it is something BIG!

You are an angel mother.

I found you by listening to WFMS and the radio-a-thon. Baily's story moved me so much, I am now a 12x20 donor.

The Childrens Hospitals are a BIG family, it takes special people to work in them. I found many at Rainbow and Babies Hospital in Cleveland Ohio, they set us up with Riley when we moved here 10 years ago.
You already know...you have the BEST!

Keep up the wonderful work, get some much needed rest, relax and enjoy life to the fullest, no one knows better than you and your family, just how precious life is.

God Bless You
Linda Rose
grammyr61@yahoo.com

2:39 PM  
Blogger Mary Ann Lucas said...

To my dear Angie and Bailey,

Oh my goodness...I'm speechless! Can you even imagine that!? I have been singing praises to our most wonderful and gracious Lord all day today and continue to pray for your healing heart. God's Blessings continue to amaze me every day and your story is a tremendous testament to faith and hope. It is such a priviledge to be your friend and an honor to watch my childhood friend be the most incredible Mom. I'm so proud of you Angie and Bailey!

all my love...Mary Ann

2:43 PM  
Anonymous Anonymous said...

Bailey, you are really something!! Jeff Gordon visiting you. He's my racing hero. Keep healing, sweet young lady, love and prayers, Dane's Gr-grandma Melvin

7:00 AM  
Anonymous Great Aunt Robin said...

Good Morning Girls!! I just keep thanking God for the wonderful blessings he has given us. To say he is awesome seems inadequate for the gift he has given. Each day of healing gets you that much closer to coming home!! We all love you guys so much. See you soon.

7:52 AM  
Blogger Nancy DeCamp said...

Isn't it amazing. I mean, God has his plan. And we run around like a bunch of worker ants praying this and praying that and trying to do this and trying to do that. And God lets us do it. Then he smiles and turns to those with him in the heavens and says (with a smile), "watch this". Then poof, all us little ants just stop, shut up, see God and stand in awe.
Love,
Nancy

8:04 AM  
Blogger Aunt Vickie said...

Nancy - you go girl!!

10:05 AM  

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