Monday, November 12, 2007

The Plan

Well, Dr. D came in this morning and drew out a plan for the week. He's cardioverting tomorrow and hoping Bailey can stay in sinus rhythm for a few days to get some fluid off and as good a shape as possible so she can have surgery at the end of the week. If she goes right back into flutter tomorrow, the surgery will likely happen before Friday, because she is only getting sicker when she's in flutter. She's been gaining 2 pounds a day these past few days while in flutter. Dr. D and Dr. T have been in and out throughout the day checking on her and asking for any questions she might have thought of. It's quite obvious no one here wants to see her go through all this again, but they've come to the conclusion that it's necessary to get her to feel better. So, we're facing the exact same scenario that we faced nearly 3 years ago: a repair surgery which may or may not result in a VAD which may or may not result in a transplant. The repair surgery will include repairing or replacing 3 of her 4 valves and a Maze procedure which will scar up the inside of her heart so that the electric current can only follow a certain path which will keep her from going into flutter. It may also involve removing from scar tissue from the inside of her left ventricle left there by the Berlin Heart cannulas. If they have problems getting her off the by-pass machine, Dr. T will put in a VAD (ventricular assist device) that will assist her heart in pumping her blood throughout her body. Her kidneys will work better and hopefully the fluid will disappear. Am I rambling? I still feel like I'm trying to let this all sink in.

Bailey is doing ok with all this. Last Friday she didn't want to talk about it, but she started asking questions over the weekend and continued with her questions today and it must be making her feel better because she's more alert and awake and more like Bailey than she has been in 5 days. She's scared, that's for sure. I'm scared, that's for sure. But with God and the doctors here at Riley on our side, we are prayerfully hopeful that Bailey will be feeling better soon.

Dr. D came up this afternoon and caught me out in the hallway. He just looked sad and dejected and said, "So, does Bailey just really not want to see me?" I felt like I needed to give him a great big hug. He's so sweet. I just love everybody here. We feel so safe here and know we are in the best of hands. But that doesn't mean this is going to be easy. It's going to be awful. I'm going to miss Bailey while she's asleep for days. Those days and nights in ICU are going to be long and lonely. But we're going to do what we need to do. I just want Bailey to feel better.

Looks like we'll be here for Thanksgiving and maybe even Christmas. That's ok. We're right where we need to be.

Love you all,


Anonymous Anonymous said...

Oh my sweet friend of 30 years, there are no words right now for me to say that will make you feel better or less scared. Everything I type seems trivial given the enormity of the situation you and Bailey are in. I have no doubt you are the stongest, bravest and most faithful person I've ever known. Bailey is truly blessed to have you right there with her. You are loved beyond measure on so many fronts.

Dr. D & Dr. T are trustworthy and faithful men who I am certain love Bailey as if she is their own. We all know they will do everything possible to help Bailey get better.

Please know that I think of you every hour of the day and wish I could be right there with you.

I love you both and you are always in my prayers...

Mary Ann

10:19 PM  
Anonymous Anonymous said...

Bailey is so lucky to have such a strong mother as you Angie. My family's prayers are with you both!

Love ya,

Linda Jones

10:32 PM  
Anonymous Anonymous said...

Angie & Bailey-

We know that you are in the BEST
& BLESSED place. We are praying
for all of you and wishing for
a blessed & peaceful recovery for
Bailey. Angie we know this is really a difficult time for all
of you. We need to come and see
you and sit and pray. That my friend you can count on! God is
holding you and Bailey. We will be
calling this week. Keep the Faith!
Give Bailey hugs and kisses and let
her know we love her.

Much Love & Peace-

Dee, Mark & Kids

10:39 PM  
Anonymous Anonymous said...

Thinking of you and keeping your family in my thoughts and prayers daily. Angie, you are one amazing mom. I admire your strength and faith so much....

Teri Margason

10:54 PM  
Anonymous Anonymous said...

Sending our love and prayers your way. Please let us know if there is anything we can do.

Love to you all,
Jim, Mimi and Corbin

5:50 AM  
Anonymous Anonymous said...

Angie and Bailey: Your wonderful blog made me appreciate how hard this is for Dr D and Dr T. They truly love Bailey, and they have so much awesome responsibility. Trust Angie to look outside her own fear to see things through their eyes. You are all amazing people! I am honored to know you all. Keep praying. Love, Diane

6:52 AM  
Anonymous Anonymous said...

Angie and Bailey, I think of you everyday, several times a day. You are both such strong ladies! I admire your strength! If you ever need anything, or just someone to sit with and hold your hand, please let me know! I know how hard being in the ICU you can be. Loads of love to you both! Marsha

7:56 AM  
Blogger carmelapples said...

Morning Glories,

I love you both so much. We will do this together. We will find the strength and peace we need to breathe through it. God promises that. I so wish there was a way around...a way to avoid...but there isn't and since there isn't we will lean into it. He will make a way through and we'll find it...together.

Love you, Deb

8:18 AM  
Anonymous Anonymous said...

Bailey, Angie, and your entire Amazing Family,

What a true testament you ladies are to our Lord and Savior! Like I said before, even though I have never meet you in person I feel like I know you. The Lord put you in my life right when I needed it and I know that with your faith and the multitude of people praying for you both everything will be all right. Please hang onto your amazing faith! I would love to meet you both in person and give you a big hug for allowing the Lord to work through you to get me back on track. I am forever grateful to you.

I work her @ Riley in Peds General Surgery, my office # is 278-9578 and email is If I can ever be of any help, please let me know! May the Lord Bless you and watch over you.

Angie Bivens

10:08 AM  
Anonymous Jane & Bob Hostetler said...

Angie & Bailey - Although we are 800 miles away, I am pacing the halls with everyone else. We know the care and concern of everyone at Riley towards your family and give thanks for it daily. Having been Riley parents ourselves, we know the true sense of peace of being in the right place at the right time. Mom keeps us updated and I check the blog daily. Take care. All of our love and prayers are with you.

10:55 AM  
Anonymous Anonymous said...

Bailey - You don't know me but my sister Susie Smith knows your mom. She has been giving me updates on you. I've been keeping you in my prayers for sometime now and I will continue to do so. In fact, you are the reason that I make donations to Riley Hospital. I have done them in honor of you! You are a strong, beautiful and inspiring young lady! The love, faith and support from your mom, family and all those that know you is truly amazing. May God bless you and keep you safe through these difficult times! Keep believing in yourself and those that love you! God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it.

God Bless you Bailey!

Margie Nellinger

3:30 PM  
Anonymous Anonymous said...

Dear Angie and Bailey,
There is not a day that goes by that I don't think about the both of you and how you are holding up. I just want you to know that I am here if you need anything. Bailey you are truly my inspriration. You make my place here at Riley truly fullfilling. You are constantly in my thoughts and prayers.
All my love,

3:37 PM  
Anonymous Debbie said...

It's been a long time since I have been able to talk to you. Bailey I just found out today that you are back in the hospital. Hang in there kid. You are tough. You are the toughest kid I know. Wish I could come and see you, however, I'm a thousand miles away. I will keep track of you through your blog. Angie, I will try and call you later. Thinking of and praying for you.

Debbie (and Ray) Robertson

4:27 PM  
Anonymous Nancy Hobbs said...

I'm praying without ceasing! I'm so sorry we are not getting the answer we want, but God is still in control. 'Many things about tomorrow, I don't seem to understand. But I know Who holds tomorrow, and I know He holds my hand.' He's with you both and it will get better. Love and continuing prayers in the Name of Jesus!

5:15 PM  
Anonymous Bob Kroslowitz/Berlin Heart said...

I was shocked to hear that Bailey is so sick. I am in Berlin and we are all thinking about her. Please know that you are all in our thoughts and prayers and that you could not be in a better place right now. Mark is truly a talented surgeon.
Bob Kroslowitz and the entire Berlin Heart team.

5:33 PM  
Anonymous Anonymous said...

Dear Angie and Bailie, How fitting that you received your plan of attack on Veterans Day. You truly are veterans of an on-going war that started 15 years ago. You have been victorious in all of your prior battles and I am confident that you will continue to prevail.

I love, admire and respect you both and consider it an honor and privilege to know you and consider you my friends.

5:39 PM  
Anonymous Anonymous said...

Hang Tough! We love you.
Mike, Nancy, Angela & Andrea

6:55 PM  
Blogger Aunt Vickie said...

Bailey and Angie -
I was going to call you tonight, but I really hate to bother you if you're sleeping and getting some rest. Everybody I know is praying that everything goes smoothly. God will get us through this. You are both so strong. Keep your heads up and eyes on God. We all love you more than you will ever know.
Aunt Vickie

7:22 PM  
Anonymous Anonymous said...

Angie and Bailey: Your "Network" is praying for you both. Your doctors love you dearly and are doing everything they in their power. Keep up your faith and we will all be praying with you. Bailey you are truly the most awesome and courageous girl I have ever met and Angie, you are the greatest mother a daughter could have. Much love to you both. Lori

7:31 PM  
Anonymous Anonymous said...

Bailey & Angie:
You are an inspiration to us all. You both are so strong and so positive. Bailey, we are all thinking of you all the time. Angie, you are truly amazing. If there is ANYTHING you need, you let us know. We are all here for you.

Todd, Linda, Alexis, Tess, and Bella Maurer

8:43 PM  
Anonymous Anonymous said...

Bailey and Angie,
I want you to know that I am thinking of the both of you. I am sure you don't know me very well Angie, but I work with you. Just want you both to know that I am praying for you. God Bless...

9:42 PM  
Anonymous Anonymous said...

I am a stranger for sure but I work here at IUPUI just across the street from Riley. I have helped get the Berlin Heart study up and going here at IU. I am inspired by your strength and courage, both of you. I have a little blonde haired daughter not too much younger than you, Bailey. I can never in a million years imagine what you have been through. I pray for your strength to conitinue throughout this hurdle and you are in great hands. I first heard the update on WFMS and then from others around. It is amazing how many lives your strength and faith has touched. You have so many people praying for you and I hope that helps make the hard times a little easier. God bless!!


4:06 PM  

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