Sunday, June 12, 2005

Another Close Call

I had a wonderful weekend at home with Marissa. We mowed the grass (and I say "we" because she walked behind me everywhere I went); we took a bike ride; we watched movies; I held her while she slept; she helped clean the house and put laundry away; and we packed our clothes for her to spend the whole week with us at the hospital. We had a great Mommy-Rissy time together.

Bailey called this afternoon and asked me to pick up some different snacks. So I walk into the hospital at 4:00 with nearly 2 wagons full of groceries, and her nurse, Leslie, meets me outside Bailey's door to tell me Dr. T just called and said not to eat or drink anything because he's looking at a heart. So, needless to say, the snacks stayed in the wagons until we got word about 4 1/2 hours later that it was a no-go. Bailey thought for sure this was going to be it - she said she just had a feeling. And Colin happened to call during our waiting period and he thought this was going to be the one too because "[he's] getting tired of this". Haha! He's such a sweetheart. So Scott, Nancy, Tom, and I and Leslie sat with Bailey and waited and waited. She was scared. We were scared. We even signed consent forms this time. I think that's when it really hit me - this really might be it. I wonder if we've had enough close calls that I'm just not really believing anymore that it's going to happen. The nasty weather tonight made it interesting too. Luckily, I think all the tornado warnings were out of the way by the time they would have had to travel to examine the heart - if it would have gotten that far. (It's funny, I usually get nervous when tornado warnings are in effect, but since I had other things to worry about, it didn't bother me in the least.) So, once again, Bailey immediately asked for food when her nurse, Jenny, walked in and said she could go ahead and eat. I love Jenny. She was riding the "roller coaster" with us.

Bailey's new Berlin Heart machine arrived Saturday morning around 6:00, and they (the profusionists - Alan and Mike, I think their names are) had it up and running and switched over by 9:30. Mike came up at 7:30 to tell me it had arrived and they were working with it and that they'd be up with it soon. I said, "Good. That will make Bailey feel better. She didn't want to go to sleep last night." [She was afraid it was going to stop working and she wouldn't know it. - Although her nurses set her monitor alarm so it would pick up the VAD rate and would alarm if it fell at all.] And then Mike said, "Well, I didn't want to go to sleep last night, either!" I think they were all a little nervous about the whole thing. It was definitely an unsettling feeling waking up in the middle of the night (as I did often Friday night) and seeing a black screen on the lap top. We definitely felt a little lost. But the new one's working just fine so far. We've had it running on battery power a couple times for very short trips (like just down the hall), and it seems to be fine.

Josie made it to Florida safely through the tropical storm and is having a great time. Marissa's spending the night tonight with Aunt Debbie and, I'm sure, having a wonderful time. Bailey's sitting behind me in the lounge playing Playstation and having a pretty good time herself . . . now that she's relaxed.

Hope everyone has a great week! Thank you, God, for all the rain we've had today - we needed it desparately - and it was such a calming rain.

Love you all,


Blogger Martha said...

Bummer!!! Such another close call. Funny I kept hitting refresh all weekend on your blog as I just had "this feeling" I was going to read a new post that rang out.. "Bailey's getting a new heart". I know my disappointment is .5 of what all of yours are! Bailey and you are Warriors! God has something incredible planned for both of you. I think Bailey is going to grow up to be one heck of a doctor!!

"You may be going through a tough time right now but God is getting ready to bless you in ways that you cannot imagine."

11:23 PM  
Blogger Aunt Vickie said...

Amen to what Martha said!

7:20 AM  
Blogger Nancy DeCamp said...

Preaching to the choir! Dittos!

7:57 AM  
Anonymous Anonymous said...

And I say ditto to all that too. We just have to keep praying!! Hugs, Myra

9:11 AM  
Blogger Lara said...

I'm so glad you got to have such a good, bonding weekend with Rissy. I can just imagine her following you everywhere, doing everything with you. So sweet:)

I'll just ditto what everyone else said, too, although I was really expecting the "next one" to be it. But it'll happen when it's meant to happen. Bailey's and you're positive attitude is what's making all of this bearable for you, so keep it up!!

Have a good week!


11:51 AM  
Blogger Martha said...

I was reading today a daily devotional that is sent to my e-mail every day. I quickly thought of both of you and needed to share!!

Only One You
by John Fischer

"Mister Rogers was right after all: There is only one you. But this information is much more important than to just be boosting your self-esteem. It is to help you better serve others by being more confident about your God-given role in life.

No one else fits your shape. No one else has your blend of gifts, talents and natural abilities—making you very important in the whole scheme of things. “God made our bodies with many parts,” wrote Paul, “and He has put each part just where He wants it” (1 Corinthians 12:18). And as it is with the human body, so it is with the Body of Christ — the corporate collection of all who believe.

But this uniqueness goes beyond giftedness; it reaches as well into the depth of each of our experiences in life. No one else has your life. No one else has your pain, your hardship, your joys and sorrows. Everything in life shapes us and we are shaped by everything for a reason: so that we can touch others in a unique way based upon who we are and what we’ve been through. God doesn’t waste anything in our lives.

Every piece of our lives and experiences can be used of Christ to touch someone else. We were made for each other; we live for each other; we even die for each other. We die with hope so that others who live might see the reality of Christ in even the darkest of hours. God uses everything.

Are you just getting by, or are you living for a reason? Think about your unique gifts and ask yourself how those gifts are benefiting others. What specific way is God using you to touch others in the Body of Christ? Do you seem to have an extra measure of wisdom, or mercy, or discernment, or knowledge, or administration, or desire to serve? These will help determine how you can look for opportunities to help others.

And then think about the things you have gone through so far in your life—especially the difficult or challenging things where God has met you with His presence and power. That information is not just for you, it’s for you to empathize with and encourage others who have encountered similar struggles.

God isn’t messing around here. There are no accidents with our lives. Whatever we have received and experienced has shaped who we are, and because of that, we are qualified servants. There is truly no one else like you… for a reason."

John Fischer is the Senior Writer for Purpose Driven Life Daily Devotionals.

2:28 PM  
Blogger Aunt Debbie A said...

(From Marissa)
"Hi Mommy! I love you! I hope you had a great time today at Bailey's hospital. I love you, Bailey. I hope you get home soon. I hope you have a great time. I'm not afraid of Sophie anymore and I rub her ears. I'm having a good time at Aunt Debbie's. I hope you get better. I love you so much that I always want to give you a hug and a kiss...okay one more word and that's it...AND...Um...I love you, Mommy. I love you, Bailey. And me and Sophie are friends forever...I was about to say 'Smokie' (giggle, giggle)!"
Goodbye, Marissa

Hi guys! We're having a good day today. We've swung, played in the sprinkler, gone to the dollar store for some "treats", and done hair about 25 times. : ) Rissy wants to stay over again, I hope that's okay. She is curious as to when her softball game is though. Let me know if that's okay! We're off to Melyn's softball practice.

Love you! Aunt Deb

4:57 PM  
Blogger Annette said...

I just got home from Connecticut. I'd been thinking about Bailey. Since I was gone for 5 days and wasn't able to log onto the Internet, I figured "maybe this weekend something happened"! I am also sorry it didn't come through, but I know it's gonna happen soon -there are so many people praying and sending loving thoughts to you!!!!

Angie - if Marissa wants to help someone else clean house, you can always send her over here - I don't have any little girls to help me (lol)!!!!

Good news! Matthew was offered a job today - a real, adult out-of-college job! He's going to accept it tomorrow! We're so proud of him!

Now that my cold is all over, I can come and visit! I'll try to come down this week. Of course, someone like me isn't as exciting as Patrick Dempsey, but what can you do, right? I hope you have a good week and hopefully the new heart will come very soon!!!!

Annette :)

6:25 PM  
Anonymous Lindsay said...

Hey, even through all these rejections of all the hearts that have come up, it is just Gods way of telling you that they arent the right ones for bailey. Just dont worry and take a day at a time

"May your unfailing love rest upon us, O LORD, even as we put our hope in you."
-Psalm 33:22

12:35 PM  

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