Friday, June 17, 2005

Day 141

Wow! Can you believe we've been here 141 days? This really does feel like home now. I've never lived out of a suitcase for anywhere near this long. It's been really nice this week having Rissy here. Now if I could just get Tom and Josie here too, we'd be fine! We've seen two of our nurses get married; three members of our medical team have gone on or is about to go on maternity leave (two of which weren't even showing when we got here); the dead of winter turned into spring and then into hot, humid summer; two bottles of shampoo; 3 bars of soap; 2 tubes of toothpaste; 6 large boxes of kleenex; about $150 worth of McDonald's coupons (and thank you, Mimi, for the bunch of coupons today! - we were down to our last 3!!); my boots turned to tennis shoes and then turned to flip-flops; an entire season of American Idol and Survivor; re-runs of Grey's Anatomy; I don't know how many movies . . . ok, you get the idea. Boy! We've been here a long time. And we are content to be here for as long as God is planning. Oh, we have our days. But as soon as "those days" are detected, our medical team rallies around us and does an incredible job of boosting our spirits. You can tell, it's not a job for them to care - they care from their hearts. I can't imagine being in any other hospital for this long - it would be sad and lonely and a constant feeling of being trapped. I am so grateful for Riley and for each and every member of Bailey's medical team - even those who haven't directly taken care of us, their smiles and greetings are so warm and comforting. I thank God every single day for Bailey's team.

Not a whole lot happened today. Colin came in for his biopsy. They stopped in afterwards, but he was tired and didn't stay long. He doesn't have "Tina Turner hair" anymore - he got it cut. He's still not sure if he likes it or not.

Marissa's been so busy here. She and Bailey both played with glitter and glue today on two separate occasions and glitter was EVERYWHERE! The bottoms of their feet looked like glittery footprints - you could barely see skin. Believe it or not, Rissy's still awake. I think she's taken to Bailey's sleep schedule this week.

Bailey and I started a 1000-piece jigsaw puzzle about 2 1/2 hours ago. We're actually doing pretty good at it. I would say it's already about 1/3 done . . . well, maybe 1/4 done.

I think I'm going to bed now. I'm tired. I have to go find Rissy -- she's off with the night nurses somewhere. She says she's going to be a nurse on the Heart Center here at Riley when she grows up. She's such a sweetie!

Have a great weekend, everyone. I'll catch you Sunday evening, unless something happens before then.

Love to all, Angie


Blogger Lara said...

I'm hoping something does happen, but if not - have a wonderful weekend at home! Get rested up for next week. We just never know when it will happen, and you'll need lots of energy to get through! How about some more pictures??


7:45 AM  
Blogger Aunt Debbie A said...

We found Rissy's keychain!!!!!!!!!!!!!!!...and her purple terricloth jammies...and her white socks with navy trim! : ) Sorry!

Aunt Deb

9:49 AM  
Anonymous Stephanie Nelson said...

Hey there Bailey, I just wanted to let you know that I have been keeping up with your story since about March. Each time I am online, I check in on you hoping for that one piece of good news we all want to hear!!
I wanted to post today because I feel your suprise of day 141. When My daughter Isabelle was born with a CHD, we spent the first 148 days of her life in Riley NICU Dr. T was her surgeon too!! Then 6 weeks after discharge we spent another 29 days in the (then new) Heart Center. Luckily Dr. T fixed her up perfectly and she hasn't been back since (Except for checkups). I was lucky she was an infant, because I couldn't imagine that amount of time with a child who could talk (I am sure mine would complain) You are a special kid and I know that God has a wonderful plan for you that includes being an inspiration to all of us in the world. Hang in there!!
Also just wanted to let you know My mother knows another patient of Dr. T's that had one of those devices.(Keith Something, I can't remember his last name :) ) Saved his life too!! I think that Dr. T is wonderful and we are all lucky he chooses our little side of the world to work at.
Hang in there!! You are constantly in our thoughts and prayers in NE Indiana.
With heart
Stephanie Nelson
Proud MOM to Kaleb, 8, HH; Isabelle, 3, TAPVR (repaired 2001-02) ECMO baby #s426 & 446, and baby Karys, 1, HH.

12:18 PM  
Anonymous Terry Pedigo said...

Hi my name is Terry Pedigo i work with Robin Davis,she talkes about you all the time.Ronin is very proud of you Bailey and i do not know you but what ive heard im proud of you to.Be strong good things will come your way i love the photos there sweet.Best Wishes Terry Pedigo

10:04 PM  

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