Tuesday, June 28, 2005

5 Months

We've been here 5 months now. Wow! I never thought we'd be here this long. I remember back in January wondering if we would be here long enough to celebrate our birthdays in here (April). I didn't even go beyond that. Funny how there are some things in life that you absolutely have no control over. In this case, that's a comfort to me. Back on pre-op day when we were admitted unexpectedly, I remember feeling a huge relief that we weren't going back home - that Bailey was in the best possible place she could be and was going to be taken care of by the best medical team. The thought of going home scared me. And the thought of going home since then has scared me. Of course, once she gets to go home I imagine I'll be fine, but there's no other place I'd rather be, with Bailey in this condition, than here at Riley.

Bailey had a dental appointment here today. Last night she was eating and one of her wires sliced her lip. It bled like crazy but, unlike her nosebleeds, didn't bleed for long. The Riley dentist came over here last time (about a month ago) but this time we had to go to them. It was eventful. This little 2-year old boy ran up to the Berlin Heart and reached out his hand to grab one of the lines. I couldn't get to him fast enough, so I just said (in a slightly panicked voice), "Bailey, Bailey, Bailey!" She turned around just in time to shove him away. We were so scared at the time, but later we laughed about Bailey pushing a little boy. Luckily, she didn't shove him to the ground! Then another little girl pushed a large plastic truck across the waiting area and across the hall right toward the VAD and Bailey stopped that one with her foot. (The girl wasn't close enough to be shoved though. Haha!) Luckily they called our name very soon thereafter, because we were about to leave, we were so nervous. But they took care of us and we made it back to the room.

I scoped out the parking garage and found an outlet next to the elevator. I'm not sure if the cord is long enough to reach, but one of our doctors is checking out other options too. It looks like we should be able to see fireworks on Monday.

I got to see Josie's and Marissa's softball games tonight. The did such a good job! Marissa got weirded out and didn't bat the first inning because she didn't like to bat last. (Something about it being more fun to stop at all of the bases as opposed to running around them all without stopping, which is what the last person batting would do.) But she rallied and batted great the other innings. Josie's team won 20-something to zero. I got some good pictures - I'll post them this weekend.

Dr. T turned Bailey's VAD rate down to 70 today. We'll see what happens!

Bailey's been wearing her U.S. Gymnastics Team warm-ups today. They fit great! Thanks again, Kara!

Hope you all got some rain today - we got a nice little storm. Have a great day!

Love, Angie


Blogger Annette said...

Hi Angie! Again, I can really relate to what you said about wanting to have Bailey at Riley because it's the best place for her to be. When Matthew got very sick I took him to the doctor - he could hardly stand. The doctor wanted him to come back the next day for some tests. He left the room to make arrangements, and I told the nurse that I wanted Matthew admitted right away. I felt that the hospital would be the best place for him and they could take care of him. I was too scared to take him home. Everyone at Riley cares so much for Bailey - I think she's touched all of their hearts!!!!

Boy, we really did get rain yesterday. I was out driving and the streets were actually flooding. I was petrified! I think I crawled home at 30 mph! My breaks got wet and I was sure I would end up skidding. Of course we did need the rain and our lawns must be very happy now!

Well, you have a good day. Give Bailey a hug for me!

Annette :)

5:47 AM  
Anonymous Anonymous said...

Hi Bailey! I attended the Heart Walk kickoff this morning and was touched by your story. My husband, Carl was diagnosed with a heart condition in April of 2004. His health deteriorated quickly and in October 2004-he had a VAD placed in him. A few days later he was placed on the heart transplant list. On November 20th, we were married in Methodist Hospital and hours later we were notified that Carl was getting a heart. Thanks to God we only waited 28 days.

Bailey, I know that this is hard for you but you will get a heart. God is waiting for the right one to come along. I know how difficult it was for me waiting so I can't imagine what it is like for you. Carl and I will be praying for you. You have touched my heart and millions of others.

Stay strong...keep the faith.
Bobbi & Carl Drury (Plainfield IN)

10:10 AM  
Blogger Aunt Debbie A said...

Good Morning Girls!

I can't wait to see Rissy and Josie's painted helmets. Wow, man! Little league is gettin' fancy! : O) Melyn was at softball practice Monday night and was running to second base when the catcher threw a wild one...it hit her square in the back. It sounded like a base drum! I am not a good "sports mom". I saw (AND HEARD!) what happened and it took every single molecule of "whoa momma" I got in me not to rush the field to make sure my baby was alright. (I know...pathetic) But I knew if I did Melyn would most likely not speak to me until she turned 30. The coach even asked her if she was okay...that's really what scared me the most because he always tells the girls "You're ok...shake it off!" (You know, when they've slid into second and they are bleeding profusely from the leg or something like that. : )

In fact, he asked her about 3 different times if she was okay. When we got home it was really starting to hurt her. I lifted her shirt over her head and she had an imprint of the stitching of the softball on her back!! No...I would definitely not be a good sports mom...THANK YOU GOD FOR MY GIRLS...AND BARBIES...AND DRESSES!!!...AND FINGERNAIL POLISH!!

Look forward to seeing you guys tomorrow. Have you thought of anything that might sound good that you don't have there? I would try to find ice cream dots, but seeing as how they would probably last 2 minutes as the interior of my car has been upwards of 110˚ these past several days, I probably should think of something else. Let me know before 4pm tomorrow if you think of something. I sure do love you guys.

Love, Aunt Debbie x0x0x0x0x0x0x0

10:33 AM  
Anonymous Lindsay Davis said...

Hey girls! I cat stop laughing about you pushing that little boy, i dont know why, it just sounds funny!..haha wow..well i will chat with you later!
love you lotz,

10:52 AM  
Blogger Carl said...

Hello Bailey,

My name is Carl. My wife Bobbi sent you an email earlier today. As she mentioned, I was on an LVAD and received a heart transplant on November 21, 2004, the day after we were married while I was on the LVAD. We have quite a story but it sounds like your story is even more amazing. I know how hard it is to wait for a heart transplant. I cannot imagine what it must be like to wait for as long as you have but it sure sounds like you and your family are making the best of what God has laid out for you. You will be in my thoughts and prayers. I hope to meet you someday. Let me know if there is anything I can do to help or encourage you.

Bye for now...Carl

11:11 AM  
Blogger Nancy DeCamp said...

OK - now you have given us all another reason to not like going to the dentist!!!! HA! Remind me next time I stop by to STAY AWAY FROM THE BERLIN HEART AND EVERYTHING ATTACHED TO IT! I don't want to be pushed by Bailey! HA! Keep your spirits up!

1:08 PM  
Anonymous Anonymous said...

Angie and Bailey:

Feel free to drop us a line. We would love to hear from you. I was telling my brother who is stationed in IRAQ about you and it touched him as well. Several of the troops in IRAQ would like to send something to you. Would that be okay with you?

Bobbi Drury (bobbi.drury@brightpoint.com)

4:31 PM  
Anonymous Lynn said...

Hello guys!

Guess what? The blood donation center rejected us! I got a new tatoo in Feb., told the truth about it and got rejected. I could have lied and no one would have been the wiser....see what honesty gets me, 4 hours on the road just to eat at The Cheesecake Factory. They rejected my other friend who was going to come on Friday because of her recent miscarriage. They only ordered 2 units so Josh's cousin is going to do them both. See you next week!


9:17 PM  

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