Thursday, November 15, 2007

What a Glorious Day

Bailey is a warrior. Dr. T talked to me yesterday about not knowing how today will go; not knowing until he opens her up what he'll find; don't know if this will work but it's a good shot . . . I have received that identical message before every single surgery that she's had her entire life from either Dr. T or Dr. Brown. It feels like a hard kick in the belly, but it's not anything I didn't already know. Bailey has been on the leading edge for 15 1/2 years. She constantly treads new ground.

Bailey didn't sleep much last night. She woke up at 11:00pm and wanted to hurry up and eat something since she had to stop drinking and eating at midnight. Then she was awake most of the rest of the night. She was so scared this morning, but not panicky or out of control. She was so happy to see Jill, one of her very own personal surgery nurses, and Jill promised her that she would be right by her side the entire way. That gave her the greatest comfort. Sweet little Rissy was quite upset to see Bailey so scared this morning. It was hard for Josie to see Bailey so scared too. We gave each other a great big hug, and that helped get us through the rest of the day.

It was SO GOOD to see Dr. T's expression when he came up to talk to us after surgery today. He was pleased. I'm so happy when he's pleased because so much of me relies on him and Dr. D. Dr. T said that everything went very well, all her pressure numbers were good (not perfect, but good), and he is hopeful that this will hold her "for a while". I'm hopeful that "for a while" means decades. He also wanted to do a lung biopsy to see if her pulmonary hypertension had become a primary issue as opposed to a secondary issue, which it's been since birth. If it has somewhere along the line become a primary issue, that means that a transplant that she might need in the future would likely be a heart and a lung. He didn't get the biopsy done because he didn't want to put her through undue stress, but what he saw in the pressure numbers made him feel pretty confident that she would likely only need a heart . . . if it comes to that.

We were able to see Bailey in ICU at 6:00pm. We walked in her room, and she was already awake (falling in and out of sleep) and still had the tube down her throat (the ventilator). She started pulling on the tube and we said, "No, Bailey, Sweetie, you can't pull on that." Scott said, "T put that in there, Bailey." She looked up at him and formed the shape of an "L" with her index finger and thumb. Ha!! The entire room busted out laughing. I told Dr. T that this was going in the blog! He was quite amused. After checking her out and draining the Foley cath like he likes to do, he turned to walk out. Bailey pointed at him. I said, "Do you want T?" She shook her head yes, so I called out for him. He came back to Bailey's bed, and she mouthed as best she could, "Thank you." I don't know if he kept his composure (he quickly turned and left the room after patting her leg and telling her "you're welcome"), but I know I was seriously struggling and my heart was swelling up with pride. She loves him so much for his talent, for his orneriness, and for his compassion.

She wanted to know about her weight. She heard someone say "47", as in 47 kg, and Scott said, "No, Bails, that's not your weight anymore." I said, "Sweetie, T got about 15 pounds off of you today." She put her hand up to her forehead and started to cry. She hasn't had a pair of jeans on in months. I can't wait for her to wake up and check herself out! I do see her ribs!

Then, she pointed to somewhere in the direction of the foot of her bed and put her hand in a fist and pumped her thumb up and down. Nancy and I looked at each other and couldn't figure out what she was trying to say. About 1/2 later, it just hit me: "Bailey, were you asking about Survivor and Grey's Anatomy?" She shook her head yes! Ha!! We were saying yesterday that she would likely miss our 2 favorite shows and I would have to watch them by myself. She was happy to hear Survivor started in about 1/2 hour. (Although she's been sleeping through them so far.)

They took her off the ventilator at 8:30 tonight, and she's been sleeping like a baby ever since. Her numbers on the monitor are great: heart rate 85, O2 sats 97, art line pressure 88/47, CVP 10, and respiratory rate 15. And her blood gases are great. And God is great.

I'm so happy. All the family is gone for the night and it's just me and Bailey in our room in ICU. The nurse isn't even in here at the moment. And, I don't feel lonely tonight. It was wonderful to be with my family and friends today -- it felt like the Thanksgiving gathering that Bailey and I will likely miss next week. (But we've been promised that plates full of food will be delivered to us. Yum!) And I knew in my heart that all you guys were right there with us too. I can't even begin to properly convey the amount of encouragement and love that you have showered us with in these tough, tough times. I, personally, am forever grateful to each one of you. God is definitely carrying me through all this and you guys are crowded in on each side of us cheering me on. You guys are all wonderful!!

I pray that we have a night as incredible as our day has been, and a day tomorrow full of light, laughter, and hope.

Thank you for hanging in there with us,
Angie

21 Comments:

Anonymous Anonymous said...

This is what life is about. This life story gives so many people hope about their faith, their families and their dreams. I truly hope that Dr. T will someday know just how grateful we all are for his commitment to his kids. For without that commitment and dedication to his profession, I am certain there would be fewer little souls on the planet.

Bailey is a remarkable child with such a gracious spirit and will to live. Oh, how I wish everyone would live as she lives. She teaches us every day.

Angie....well, the tears are rolling because I can't ever express enough how much I love you and wish such goodness and happiness for your life. Peace is my biggest hope for you. Thank you for your grace, courage and love for your children and family.

Mary Ann

10:20 PM  
Anonymous Anonymous said...

Angie and Bailey,

My 2 favorite shows are Survivor and Greys Anatomy also!! I watched both of them tonight, and I thought of both of you as I always do during Grey's!! I ran to check your Blog as soon as they were over. You are both such troopers!! Angie, I am so glad that I met you on our Mission Trip to Jamaica. You and Bailey have been an inspiration for me! Only God could have sent you such a great team of doctors, family and friends. Please know that I am thinking and praying for both of you daily! GOD IS GOOD!
Love, Janice Kornele

10:48 PM  
Anonymous Stan Tunison said...

I knew when I woke up this morning that it was going to be a glorious day for you today. A radio station up here in Minnesota plays Christmas music 24/7 during the season. I thought it started after Thanksgiving, but when my alarm went off at 4:00AM today, Josh Groban was singing O Holy Night. Now, that's an excellent song, but it doesn't really make me jump out of bed and start the day. At first I thought, why are they starting the Christmas songs already, but then I thought of you. I'm convinced it was a sign to let me know that God was "awake" and looking over you. I hope and pray for continued improvement, and a joyous holiday season.

Stan

10:50 PM  
Anonymous Anonymous said...

There is nothing that makes us happier than to read about how great a day this is for Bailey. We must have checked the site 50 times today for updates. We are so excited for everyone. Bailey, you are doing great! We can not wait to see you. We think about all of you constantly.

Todd and Linda Maurer

11:09 PM  
Anonymous Aunt Robin said...

It was so good to come in to the waiting room this evening and see smiles on your faces! Thank God for carrying Bailey thru this ordeal. He continues to show his healing hand on her. We love you all and can't wait to be able to see Bails up and runnin! Angie I hope you can get a good night sleep tonight with a happy heart! Love you so much and will see you soon!

11:33 PM  
Blogger Angie said...

This comment has been removed by the author.

12:28 AM  
Blogger Angie said...

This comment has been removed by the author.

12:32 AM  
Anonymous ems882 said...

I have also been checking this all day. I was so happy to hear that Bailey's surgery went well. And now to hear that she is doing better is so wonderful. Bailey is lucky to have such a wonderful family and support system. Bailey is such a fighter! I read the blog every day. I always find my fiance or call him at work to tell him the latest on Bailey. He fills in people at work. We have been following Bailey for a while. It never ceases to amaze me as to how strong you all are. Words don't describe how happy I am that surgery went so well and Bailey is doing so well. I would love to see her reaction when she wakes up to find out she doesn't have a LVAD and the fluid is gone. Dr. T is such a superb surgeon and person. We will continue to keep Bailey, you and your family in our prayers. Take care! Angie W.

I apologize for the 2 posts by "Angie". I post under ems882 so maybe you can put my comments together. Sorry about that.

12:42 AM  
Anonymous Anonymous said...

My faith is renewed. I can still hear Bailey's giggle from yesterday morning....hearing that as we came down the hall just made me feel so much better about the procedure ahead. I just couldn't believe how strong/calm/brave she was just an hour before surgery (and you too Angie)....I'm going to adopt some of that courage for myself...yesterday was a truly remarkable day!!! Love you all so much...Bailey, Angie, Tom, Josie & Riss.

From the "Other" Aunt Robin (and Uncle Jim, Erica, Emily and Lyndie)

6:23 AM  
Anonymous Anonymous said...

Praise God! Thank You God! I have a feeling Dr. T did not keep his composure after he left the room when Bailey mouthed "Thank you" to him. My tears sure started flowing when I read it. It's just another testament to what a wonderful, special person Bailey is. She's given so many so much by her courage, strength and even humor through overwhelming tough times. So Bailey, THANK YOU also for the wonderful way you touch all of us. We pray you have an easy recovery. God bless you!

Carmen Pahud and Family

P.S. I'm doing the happy dance with Aunt Vickie also!

7:45 AM  
Anonymous Anonymous said...

Angie and Bailey: Your strength and your faith amaze me. You continue to teach me, every day. THANK YOU for letting us all be a part of this amazing miracle.
Love, Diane

7:57 AM  
Anonymous Steve and Dawn Denny said...

Praise God for his blessings! I love when the person who is expected to "help" is actually the one "helped" - Bailey, you touched Dr. T's heart - I believe you are doing a miracle in that man's heart just by being his patient. Angie, what a wonderful mother you are to instill such kindness in Bailey...

7:59 AM  
Anonymous Anonymous said...

Angie, here is a email that I received from Rissy's school. Long story as to why I received this but, I know one of the teachers and she ask for me to provide them with updates yesterday. Much Love and Joyous Tears were shed this morning. Lori
From: Chere Marlo [mailto:Chere.Marlo@ftcsc.k12.in.us]
Sent: Thursday, November 15, 2007 3:32 PM
To: Lori Emerson
Subject: Please tell Marissa I am thinking of her and her family. :) We missed her today!! If she is here at school tomorrow, have her wear red, white , and blue!! :)

8:02 AM  
Anonymous Cindy Dashnaw said...

Angie & Bailey, I just wanted to say hi, and as always -- you are both amazingly unselfish to share what you're going through with the rest of us. I'll add my prayers to the rest. You rock!
-Cindy

8:34 AM  
Anonymous Anonymous said...

Well, I can't even begin to explain how awesome it is just to read this blog and to read about the miracles that have happened. You are truly a miracle Bailey that God continues to astonish us with. Have a great day! Kim C.

P.S. Maybe someone recorded Grey's Anatomy and Survivor so you can watch it again!!! (Hint, Hint)

8:49 AM  
Anonymous Anonymous said...

Way to go Bailey!!! I'm soo happy to hear that things went well! It's amazing what prayers can do! What wonderful doctors you have! I love everyone at Riley and have some much to thank them for! I know you do to! We all need to see pictures of Bailey back in her skinny jeans! Love to you girls! Marsha Hetser

8:54 AM  
Anonymous Anonymous said...

Bailey, I am so glad to hear that every thing went well. You do no t realize how famous you are around Indy. Yesterday I was out with a coworker to visit a home, and I was talking about how I might have to make a trip to Riley because my little buddy is back in. My coworker was like, "You don't know Bailey do you?" I was like, yes and I have known her for a long time and we are both Riley cardio kids. My coworker then started talking to me about WFMS and how much they have been by your side. I thought it was amazing to know that people you have never met or even talk to know who you are and your story. It made my day. Stay strong girly. From a Riley kid to a Riley kid!

Melodie

9:06 AM  
Blogger Vicki Hurst said...

Dear Bailey, Angie, and family

Just wanted to let you know how happy we were that Bailey made it through the surgery so well. We have been praying for all of you.
Bailey, you may or may not remember us teaching you in the chilren's ministry. You are a very special girl. We keep up with you through your aunt Debbie and my coworker, Joann Maddox (Jennifer's mother). God has already used your life to touch others in a great way. We're so encouraged by your faith and the strength that God keeps giving you.
Take care... Our Love, Hal, Vicki, Lindsey, and Clay Hurst

8:58 PM  
Blogger Vicki Hurst said...

Dear Bailey, Angie, and family

Just wanted to let you know how happy we were that Bailey made it through the surgery so well. We have been praying for all of you.
Bailey, you may or may not remember us teaching you in the chilren's ministry. You are a very special girl. We keep up with you through your aunt Debbie and my coworker, Joann Maddox (Jennifer's mother). God has already used your life to touch others in a great way. We're so encouraged by your faith and the strength that God keeps giving you.
Take care... Our Love, Hal, Vicki, Lindsey, and Clay Hurst

8:58 PM  
Blogger Vicki Hurst said...

Dear Bailey, Angie, and family

Just wanted to let you know how happy we were that Bailey made it through the surgery so well. We have been praying for all of you.
Bailey, you may or may not remember us teaching you in the chilren's ministry. You are a very special girl. We keep up with you through your aunt Debbie and my coworker, Joann Maddox (Jennifer's mother). God has already used your life to touch others in a great way. We're so encouraged by your faith and the strength that God keeps giving you.
Take care... Our Love, Hal, Vicki, Lindsey, and Clay Hurst

8:58 PM  
Blogger Vicki Hurst said...

Dear Bailey, Angie, and family

Just wanted to let you know how happy we were that Bailey made it through the surgery so well. We have been praying for all of you.
Bailey, you may or may not remember us teaching you in the chilren's ministry. You are a very special girl. We keep up with you through your aunt Debbie and my coworker, Joann Maddox (Jennifer's mother). God has already used your life to touch others in a great way. We're so encouraged by your faith and the strength that God keeps giving you.
Take care... Our Love, Hal, Vicki, Lindsey, and Clay Hurst

8:59 PM  

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