Wednesday, June 29, 2005

We Have a Plan

Dr. T turned the VAD rate down to 60 today. He's turning it down to 50 in the morning, and then they're doing an echo in the afternoon to see how Bailey's heart is functioning on the lower VAD support. If her heart is doing well, they are likely going to put her in inactive status on the transplant list, leave her on a VAD rate of 30 over the weekend, probably do a cath next week, and, if all continues to look good, work toward weening her off the Berlin Heart. If her heart shows an increase in PA pressure as a result of lowering the VAD rate these past few days, we'll remain on the transplant list and continue to wait for a heart. So, that's the plan. Bailey said before her surgery back in January that she had a feeling they would have to put her on the Berlin Heart after her repair attempt but then they'd take it out and she'd go home with her own heart. We've kind of written that off, but there might be something to her thought. Only time will tell if she was right. Only God knows where we're going to be in a month . . . or a week or even a day, for that matter. Bailey has never been a textbook case. They have chartered new territory with her on several occasions. I just continue to thank God every day that He's taking care of us, no matter where we end up, and that he has given us the best medical team He could put together. I am so very, very, grateful.

Wow. We've been on the transplant list for 4 months now. To even think about the possibility of going home with Bailey's own heart stirs up a very cautious excitement. We've gone every day for the last 4 months wondering if it was the day her new heart would become available. Now, we're wondering every day if Bailey's going to even get a transplant or if her heart has (and is continuing to) heal. There has only been two certainties we've been living in the last 5 months -- that God is God, and that we have no idea what the very next day has in store for us. It really teaches us patience and has built our faith and trust in God on a daily basis.

I thank you all out there for keeping up with Bailey through this page, and for your comments and many, many prayers that you have said for us. We feel your prayers and love each and every one of you.

We'll continue see what tomorrow brings.

God bless you all,
Angie

15 Comments:

Anonymous Anonymous said...

Good Morning,

As your emotional roller coaster continues, please know that your are thought of often.
Love to you all...
Jim,Mimi,Taylor and Corbin

4:57 AM  
Blogger The Norris Family said...

Angie,

Please know Bailey and your whole family continue to be in our prayers.

Greg, Julie, Taylor, Frank and Sydney

6:53 AM  
Blogger Annette said...

This has been an incredible journey for you all! As you said, only God knows what is in store for you, and we'll all continue to have faith!!!!

Last night we had our Hadassah Closing Meeting. Dr. Ora Pescovitz, the CEO and President of Riley spoke. She was marvelous! She showed a video of 4 children who were Riley patients and how they were helped. She spoke of the cutting-edge research and patient care that goes on there. I sat there thinking of Bailey and how wonderful the staff has been to her and your family! You cannot be in a better place!

Hope you have a good day. For the past 2 days we've had thunderstorms and the streets have been semi-flooding. It's still hot and sticky outside - no matter how much it rains, it doesn't seem to dissipate that humidity. Today I'm taking my raincoat!!!!

Love,
Annette :)

7:00 AM  
Blogger Aunt Vickie said...

You know I can't help but think maybe that was God's plan all along and that's why she hasn't gotten a heart yet. Will I some day look back and think of how incredibly impatient I was waiting for her to get a heart and all along God knew what he was doing? Just when we think we know what's going on! Wouldn't it be great if Bailey's heart is on the mend! Well, for now I guess we'll keep praying that God's plan continues even if we don't know what the plan is (not that we ever did). :)

Love, Kisses and Hugs,
Aunt Vickie

7:18 AM  
Blogger Martha said...

Wow.. what a journey you all have been on! I am praying for the out come that God intends for you and one that is best for Bailey to live a healthy life.

Bailey is on many prayer lists across the country!!

Angie.. could you e-mail me? I have a box I would like to mail Bailey! wildscrpio@aol.com

Hugs!
Martha

7:34 AM  
Blogger Diane Roe said...

Angie and Bailey: This is amazing. Maybe God is teaching all of us a lesson about patience and trust. Those are hard for me. I want to think that I can control things, now I know that I can't. I am looking forward to seeing you both tomorrow. There are a few new things at work, and it's been so long. Sue's vacation begins in 2 weeks and we will really miss Angie! Take care, Diane

7:51 AM  
Blogger Lara said...

What an amazing end to this story that would be! We're all praying for that, but we know that what's meant to happen will. But it would be such a miracle for Bailey's to go home with her own heart! Good luck and keep up the good, positive vibes!

Love,
Lara

9:41 AM  
Blogger Aunt Debbie A said...

Hi Girlies,

God just might do it that way!! He just might. I just LOVE HIM!! Don't you!!!!!!!!!

See you tonight! Party!!!!!!!!!!!!! : )

Love, Aunt Deb

9:42 AM  
Blogger Rev. Evans said...

Bailey,
You are in my prayers daily. Angie, I have a gift from Vera (Jamaica Medical Mission) for you. I will get it to you soon. Hang in there. God is in control.
Rev. David

9:52 AM  
Anonymous Lindsay said...

HEy gals!
I remember a few months ago as i lay in my hospital bed..when i was n St. V's..i kept thinking like i want to be in control over everything! Like i didnt want any tests done that i didnt want to have! But then once i realized that i cannot be in control and the only God can..it made the whole situation 100% better! I love you all and i am praying for you! See you Soon,
Lindsay

11:56 AM  
Anonymous Anonymous said...

I will pray, pray and pray that the Berlin heart is removed and Bailey goes home with her own heart. God does have a plan for everyone and is known for his miraculous work! God told my husband to perform two tasks and he would deliver him a heart...he did those those two tasks and within hours, a heart arrived.

Stay tough and keep praying!!! God is in control of this :).

Bobbi

5:19 PM  
Anonymous Anonymous said...

I will pray, pray and pray that the Berlin heart is removed and Bailey goes home with her own heart. God does have a plan for everyone and is known for his miraculous work! God told my husband to perform two tasks and he would deliver him a heart...he did those those two tasks and within hours, a heart arrived.

Stay tough and keep praying!!! God is in control of this :).

Bobbi

5:19 PM  
Anonymous Lecia said...

Hi guys!
You are SO patient! Whether it be the heart Bailey was born with or another, what a test of patience and Faith! I guess that's why you were chosen as the family for this journey :-)
Oh, I was at the dentist with the boys and reading a story in the Readers Digest of an infant that was also put on the life saving Berlin Heart. At the time of the article it said only 4 in the U.S. had used them. I wondered if you were one of 4 or if the article was pre-Bailey. I hope the FDA realizes what a great resource this is for so many.
Lecia
Love and prayers to you all.
P.S. I'd love to watch 'Rissy bat, but she probably wouldn't if she knew she was being watched (haha)

6:23 PM  
Anonymous Anonymous said...

Angie & Bailey,

May God continue to use His powers to heal Bailey's heart. It's possible that during surgery and angel came to Bailey and told her that her heart was hers to keep forever...one never knows the power He holds. Please keep the posts coming...it has become a tradition in my home to read your post first thing when I get home from work.

Take care and God speed...

Peggy Smith

6:30 PM  
Anonymous Anonymous said...

Hey Ang and Baily-
I am very glad to hear that things are going much better. I know as well as everyone else that you will be just fine. I found this Poem by James Whitcomb Riley and I thought that you might enjoy it.

~Melodie~ :)
Little Orphant Annie

INSCRIBED WITH ALL FAITH AND AFFECTION

To all the little children: -- The happy ones; and sad ones;
The sober and the silent ones; the boisterous and glad ones;
The good ones -- Yes, the good ones, too; and all the lovely bad ones.

Little Orphant Annie's come to our house to stay,
An' wash the cups an' saucers up, an' brush the crumbs away,
An' shoo the chickens off the porch, an' dust the hearth, an' sweep,
An' make the fire, an' bake the bread, an' earn her board-an'-keep;
An' all us other childern, when the supper-things is done,
We set around the kitchen fire an' has the mostest fun
A-list'nin' to the witch-tales 'at Annie tells about,
An' the Gobble-uns 'at gits you
Ef you
Don't
Watch
Out!
Wunst they wuz a little boy wouldn't say his prayers, --
An' when he went to bed at night, away up-stairs,
His Mammy heerd him holler, an' his Daddy heerd him bawl,
An' when they turn't the kivvers down, he wuzn't there at all!
An' they seeked him in the rafter-room, an' cubby-hole, an' press,
An' seeked him up the chimbly-flue, an' ever'-wheres, I guess;But all they ever found wuz thist his pants an' roundabout: --
An' the Gobble-uns 'll git you
Ef you
Don't
Watch
Out!
An' one time a little girl 'ud allus laugh an' grin,
An' make fun of ever' one, an' all her blood-an'-kin;
An' wunst, when they was "company," an' ole folks wuz there,
She mocked 'em an' shocked 'em, an' said she didn't care!
An' thist as she kicked her heels, an' turn't to run an' hide,
They wuz two great big Black Things a-standin' by her side,
An' they snatched her through the ceilin' 'fore she knowed what she's about!
An' the Gobble-uns 'll git you
Ef you
Don't
Watch
Out!

An' little Orphant Annie says, when the blaze is blue,
An' the lamp-wick sputters, an' the wind goes woo-oo!
An' you hear the crickets quit, an' the moon is gray,
An' the lightnin'-bugs in dew is all squenched away, --
You better mind yer parunts, an' yer teachurs fond an' dear,
An' churish them 'at loves you, an' dry the orphant's tear,
An' he'p the pore an' needy ones 'at clusters all about,
Er the Gobble-uns 'll git you
Ef you
Don't
Watch
Out!

8:28 PM  

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