Inactive on the Transplant List

Today's echo went well. They changed Bailey's status to "inactive" on the transplant list. (They won't take her off of the list for potentially months, even if she goes home with her own heart.) PA pressure is right at 50, which hasn't gone down much since our stay in ICU. But Dr. Darragh explained to me today that what has been changing in the past couple months is the volume in Bailey's left ventricle. To go back a bit, the surgery back in January was to remove scar tissue that was lining Bailey's left ventricle (as a result of her heart defect, aortic stenosis). The scar tissue is what was keeping her left ventricle (LV) from expanding sufficiently to keep up with her heart. It finally just reached its limit and began causing problems. They removed the scar tissue in surgery, but they thought it might not have been enough to make a difference. So, she was listed for a transplant a month later when her LV didn't show signs of recovery. This is what they've been looking for on the periodic echos since then. Now, her LV is showing signs of recovery. The doctors just have to determine if it's enough to allow her heart to function effectively long-term. So, they are now going to turn the VAD down to a rate of 30 (beats per minute) over the weekend. They're doing another echo on Tuesday and, if things still look good, they're doing a cath next Thursday where they'll actually stop the Berlin Heart, increase her heart rate, and see how her heart functions under those kinds of conditions.

Bailey was really scared this morning before the echo. Dr. T came in and helped us out. She said she was afraid the echo would be bad news. Dr. T said there could be no bad news to come from this. Worst case is that we remain on the transplant list where we've been for 4 months now, and that's not a bad thing. Sure, it would be nice to go home with her own heart, but with that comes some uncertainties -- she could still possibly need a transplant at some point, and they would still be watching her very, very closely to keep an eye on things and make sure there are no signs of moving in the wrong direction. However, with that said, going home with her own heart would give us hope that she would fully recover. Wouldn't that be something?!

As you can tell, lots to think about and even lots to worry about, but worrying doesn't do any good and it takes away from the awesomeness of watching God work.

I'm starting to get mad at Perry (our pigeon). I've been trying to get a picture of him for months (literally!) and he just won't cooperate. I might have to come up with a different, less-flattering name for him . . .

I've finished our third afghan, and, yes, I've started a fourth. Marissa picked out yarn for a blanket for herself, so I've started that one today. She asked when her daddy was coming to pick her up and I told her he'd be here soon. She said, "Well, keep working because I want you to have it done when he gets here." She wasn't too disappointed when it wasn't done by her deadline. I just love the mind of a child.

"Thank you, Sue, for the Thursday brownies!" From: the nurses
(Don't worry! We keep a stash for ourselves, too. But I think the nurses are scheduling themselves to work on "Brownie Thursdays" now!)

Have a good one, everyone!
Angie

We Have a Plan

Dr. T turned the VAD rate down to 60 today. He's turning it down to 50 in the morning, and then they're doing an echo in the afternoon to see how Bailey's heart is functioning on the lower VAD support. If her heart is doing well, they are likely going to put her in inactive status on the transplant list, leave her on a VAD rate of 30 over the weekend, probably do a cath next week, and, if all continues to look good, work toward weening her off the Berlin Heart. If her heart shows an increase in PA pressure as a result of lowering the VAD rate these past few days, we'll remain on the transplant list and continue to wait for a heart. So, that's the plan. Bailey said before her surgery back in January that she had a feeling they would have to put her on the Berlin Heart after her repair attempt but then they'd take it out and she'd go home with her own heart. We've kind of written that off, but there might be something to her thought. Only time will tell if she was right. Only God knows where we're going to be in a month . . . or a week or even a day, for that matter. Bailey has never been a textbook case. They have chartered new territory with her on several occasions. I just continue to thank God every day that He's taking care of us, no matter where we end up, and that he has given us the best medical team He could put together. I am so very, very, grateful.

Wow. We've been on the transplant list for 4 months now. To even think about the possibility of going home with Bailey's own heart stirs up a very cautious excitement. We've gone every day for the last 4 months wondering if it was the day her new heart would become available. Now, we're wondering every day if Bailey's going to even get a transplant or if her heart has (and is continuing to) heal. There has only been two certainties we've been living in the last 5 months -- that God is God, and that we have no idea what the very next day has in store for us. It really teaches us patience and has built our faith and trust in God on a daily basis.

I thank you all out there for keeping up with Bailey through this page, and for your comments and many, many prayers that you have said for us. We feel your prayers and love each and every one of you.

We'll continue see what tomorrow brings.

God bless you all,
Angie

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

VAD Rate Coming Down

The girls left this morning so Josie could make it to cello camp. They called this afternoon to tell me all about their batting helmets for softball. As a reward for Marissa pushing through her fear of batting, Tom got their helmets painted. Marissa described hers as, "It's got my name on it and it has one color and another color and another color and another color and another color." I think that means it has her name written in rainbow colors. She loves it! And Josie described hers as her name with flames coming out of it. This might be the beginnings of a Harley girl! Haha! They were both so proud. Marissa is begging me to come to her game this week because she really, really wants me to see her bat and they have very few games left. I'm working on making that happen.

Dr. T came in and brought Bailey's VAD rate down from 90 beats per minute to 80 beats per minute. He said tomorrow he's going to bring it down another 10. They're obviously still looking at the possibility of weening her off of the VAD. We'll see!

The front desk called up to Bailey's room this afternoon and said they had a package for her. It turned out to be two autographed pictures of David Wolf. Is that cool, or what?! (He's an astronaut from Indianapolis. You can read about his incredible career at http://www.jsc.nasa.gov/Bios/htmlbios/wolf.html). One is a picture of him out in space. It's really neat. And, then, she received an autographed picture of the U.S. Gymnastics Team and one of their warm-up suits. Isn't that neat?! If we're out of here by then, she also gets tickets to the U.S. Nationals at Conseco in August. (Thank you Cara!) Unfortunately, she was sleeping when that arrived (she's getting IVIG and the pretreatment of benadryl must have knocked her out again) but she woke up just long enough to look at the picture and the warm-up suit and fell back to sleep. (Yeah, I know. She'll wake up and be up until 4 a.m. again.) She probably won't even remember seeing it, so I'll get the fun of showing it to her twice for the first time. She's hoping to get back into gymnastics at some point. She enjoyed it and was really good at it until she had to quit a year ago in April because of her irregular heartbeat.

No lightning bugs tonight. We could have dragged her I.V. pole outside but they have to take her vitals often with the IVIG, so we didn't attempt it.

Have you heard about those shark attacks on the Florida panhandle today and a few days ago? That's right where Josie was a few weeks ago. That's pretty scary! If any of you are going down there anytime in the future, just be careful. That's awful.

Fourth of July is coming up soon. I have to go scope out the parking garage for an outlet. I hear that the patients who are able to get there watch the downtown fireworks from the top floor of the parking garages. We'll either have to find an outlet or a really, really long extension cord! We can't miss fireworks!

Have a wonderful night, everybody. Catch you tomorrow!

Angie

Lightning Bugs

The weekend was nice. I really didn't do anything at home other than mow the grass. I waited until 7:00 Saturday evening to start, which made it much more bearable. But the one problem with mowing that late in the evening is the bugs, bugs and more bugs. And with it so humid, they would hit my skin and then couldn't get away because they were caught in the sweat, so I just kept accumulating more and more bugs with every step, and therefore swatting and wiping away with every other step. Now didn't you enjoy that vivid description?! Haha! Thank goodness for popsicles and baths! It was just too hot to do much else this weekend. We did the old movies and popcorn thing.

Bailey had a good weekend. She learned how to weave a design on a loom with little tiny beads. The project she's working on is very, very pretty. She's going to frame it when she's done.

The girls are spending the night again tonight. We started watching "Divine Secrets of the Ya-Ya Sisterhood" (or, as Josie says, "Diving Secrets . . ." - haha!) but didn't finish it - I didn't know it was such a deep, dark movie. I thought it would be much more light-hearted. Maybe it gets better in the end, but we didn't make it that far.

We went out to the courtyard at dusk to catch lightning bugs. Marissa caught her first one! (She's been afraid of them in the past.) She was so proud of herself. But then she got too brave and when the next one landed on her, she did the same squeal and the same dance that I do when I get anywhere near a spider! Bailey was complaining a bit about not being able to chase them herself "more than 6 feet", but she did a lot of pointing for Josie and Marissa and did a lot of "Mom, move me closer!" Lightning bug hunting is not an easy thing to do these days: try to spot them myself, try to keep the girls from getting too excited and falling off the cement walls they're standing on (only 2 feet high, but still!), trying to keep Bailey's cord up off the cement so it doesn't rub a spot in the plastic, trying to follow Bailey's direction which way to push the 200-pound box and how far and at the same time trying not to push it into the cement wall myself! Gee whiz! See what I mean?! I was mentally and physically exhausted after that. And to think we went down there just to sit at a quiet table outside in the fresh air and play a round of cards. But we had a blast! It turned into a great time and therefore a great memory.

Well, time to see what God has in store for us all this week. Hope yours is good, and we'll do our best to make ours good!

Love,
Angie

Security Guy Saves the Day

Bailey had another echo today - they're just still continuing to look at things.

I dreamed last night that I went back to work (Bailey wasn't in the hospital anymore), but our offices were in a really strange, dark building. Our computers were sitting on little portable stands, and there were lots of employees but I only knew one from before my leave of absence - our computer guy, Chris C. Isn't that funny?! I have no idea what that all means, but it was very entertaining. (And I was glad to see you, Chris! Haha!!) Hope things are going well at R&L - I miss you all.

The girls are spending the night with us tonight. Bailey and Josie are in the room playing "restaurant" and Rissy is out here with Bailey's nurse, Angie, talking her into doing a word search with her. She told Angie that she could stay out here with her "until Mommy tells me I have to go to bed". We just had some Dippin' Dots. Yeah!! They were sooooooooo good. (We purchased some more today and I asked Bailey's nurse to put them in the nurse's lounge freezer where they would be safer. So, we asked Angie to get them a little while ago and, believe it or not, all the nurses were locked out of the lounge. They had called security to come with a key to let them in. I was beginning to believe that we just weren't meant to eat our Dippin' Dots! But the security guy came and saved the day.)

Going home in the morning. Boy, it's going to be hot mowing the grass! I think I'll wait until after the sun goes down - it's not quite so bad that way.

Have a great weekend everyone!

Angie

Dippin' Dots

Bailey broke a record and slept until noon today. I was pretty bored.

I talked to one of the cleaning guys, James. He's got a very interesting story. He's from Haiti and came over here for computer school. He still has family back in Haiti and gets to visit them. He's a great room-cleaner! He's come to our aid with glitter spills often.

We went down to get lunch and found a cooler full of Dippin' Dots! I squealed - I love those things! (If you don't know what they are, they're little tiny pellets of ice cream.) So we picked up six packages. Bailey ate one and we put the rest in the freezer. About four hours later, we decided to have a Dippin' Dots snack. I went to the freezer and found only one left - someone had picked them out of our bag with our name on it. Can you believe it?! I'm depressed now. I'll try again tomorrow to get my Dippin' Dots fix.

I hear it got pretty hot today. I got to spend some time in the garden in the shade and it was quite pleasant. However, this female mallard duck flew in for a landing and began pecking at my ankles. She kept staring at me and I was afraid she was going to attack and peck all my hair out! It was a strange feeling to be watched so closely. But she decided to spread her love, and went to bug another table.

Josie started cello lessons this week and loves it! She's really excited about it and her teacher says she's doing a really good job. Rissy batted again in softball. She's got the hang of it now.

That's pretty much it for the day. Have a great Friday tomorrow!

Love,
Angie

Echo Today

They did another echo today. They're always checking periodically to see if there's any improvement in Bailey's own heart. There is slight improvement, but they don't know if it's enough to take her off the transplant list (and simply remove the Berlin Heart). They made it very clear not to get our hopes up, but it's an interesting thought, huh! It will be what it will be. (That's profound, isn't it?!)

Dr. T and Dr. Darragh were both in the room today during the echo and Dr. Darragh had to step out to answer a page. Dr. T took over the echo controls and tried to look in Bailey's ear with it. So they wrestled over the echo probe for a while . . . until Dr. Darragh came back in, then they straightened up. Dr. T must have got a little bored then, because he started watching the Drew Carrey show. Then Bailey started throwing pretzels at him and then the pretzel fight began, with Dr. Darragh threatening to put them both in timeout. Aimee (Dr. T's nurse practitioner) asked Bailey, "Haven't you always wanted an older brother, Bailey?" She replies with, "I did until I got here!"

We haven't been able to go over to Methodist because the elevator to the catwalk is broken. There is an escalator, but it would be a little difficult to get the machine on that!

Bailey was approached today to help make a book for residents to read entitled something like "How to Be a Doctor", pointing out do's and dont's from a kid's point of view (i.e., don't ask me if I miss my family; smile at me when you walk in the door; don't tell me it's not going to hurt; etc.). It's really a neat idea! She's trying to decide whether she wants to participate in it or not. I hope she does! She has lots of good insight having been here so long and having seen lots of residents pass through.

Just an FYI, the best pretzels in the world are Shultz's Salty Stix!! (Thanks, Bubba!)

Bailey had a new nurse today, Erin. The only nurse that she's had before that was scheduled to work today called in sick. I think both Bailey and Erin were a little nervous, but she was very nice and did a great job - even with her dressing change! She was talked through it by Jenny, our night nurse, during 7 a.m. report, but she still let Bailey tell her how to do it and what to do next. She's officially on Bailey's list of "approved nurses". Haha!

Thank you, Annette, for the bag of goodies! I'm so sorry we couldn't visit with you because of the echo. Bailey's been playing with the beads all evening and making really cute earrings! She's holding up in the window as I write this an American flag that she made out of beads dangling from a safety pin. She's so excited about it that she's hopping up and down on her bed waving for me to come see it.

Next week will be 5 months here. Dad asked us if we were trying to beat his record. Get this! He was here at Riley exactly 60 years ago (with polio) and he was 13 years old too. He told us today that his dad carried him in the hospital and he walked out of the hospital 8 months later. Incredible! Riley's been doing great things for a long time.

Have a great day everyone! I hear it's getting hot outside again. I think we'll stay in for a few days.

Passing out hugs to everyone,
Angie

Stamping and Scrapbooking

Bailey and I were given the task of taking pictures of some of the woodwork around the hospital for the company that did the woodwork so they can put those pictures on their web site. It was a lot of fun! It was kind of like a scavenger hunt and pretending to be a professional photographer at the same time. I don't know if the pictures are corporate website material, but we enjoyed the task.

We finished the jigsaw puzzle before we went to bed last night, but that wasn't until 2:30 this morning. I found out this morning that Bailey didn't get to sleep until 4:00! She had IVIG last night, though, which entails pretreatment with benadryl which put her to sleep for an early evening nap. She didn't take a nap today, so hopefully she'll be a little more tired tonight and can get to sleep at a more reasonable hour.

Bailey's been working on stamping and embossing today. We went down to the Child Life department and sorted through 4 boxes of stamps for her to borrow. She's making very pretty cards and getting ideas for scrapbooking. She's just busy, busy, busy! She's also filling some jewelry orders right now. I don't think there'll be time today for a jigsaw puzzle.

We watched Miss Congeniality 2 tonight. That was pretty cute.

Someone has anonymously given Tom and me funds to take a date night. If that anonymous person happens to be reading this page, thank you so much for your thoughtfulness! We'll put it to good use. We're already getting ideas from the medical team on where to go for dinner. We appreciate it so much and it is much needed - we haven't been out together in over 6 months! We've already got one of Bailey's nurses set up to sit with the girls. Thank you all for helping us out!

Thank you all for your persistent prayers!

Love,
Angie

Puzzles, puzzles and more puzzles

Dr. T came in this morning and started flashlight wars with Bailey. I gotta say, I enjoy those much more than water fights!

Today was a day of puzzles. Brandon came to spend the day with us today and helped put together a 3-D puzzle of ocean fish. It is so neat! I'll post a picture of it - it's a sphere about the size of a basketball. And it stays together by itself -- we were rolling it on the floor. It's really neat! That was fun. Then we played a couple card games before Brandon had to leave (one was this stupid United States game that us older people (Nancy and I) couldn't compete with the quickness of the younger folk (Brandon and Bailey)), and we started in on another jigsaw puzzle. Bailey said we're staying up until it's together, and I agreed. I hope I can make it!

Dane came to visit again today. He had a cath today and will be having surgery soon - they're deciding when and how extensive. Please pray for him and his family. He's such a sweet 1-year old with the cutest smile I have ever seen!

Bailey asked Dr. T today if she could change her Friday shots back to epogen (they had changed it about 6 or 8 weeks ago to aranesp (sp?)). It's a shot that boosts her blood count. The aranesp has given her huge dark bruises in her arms and legs - wherever the shot is given that particular week - and they hurt very badly. He went to investigate and came back saying, "Who's your buddy, who's your pal?" After Bailey pathetically whined that he was, he discontinued the shot altogether! She was soooooo excited!! And so was I -- maybe my ear drum won't burst anymore on Friday evenings. (She hangs on to my arm and yells in my ear when she gets them. She's sitting right here saying, "I do not!", but I sincerely beg to differ! Ask here nurses!!)

Debbie, can you bring your stamps again for Bailey? Thanks!

Vickie, can you bring some more dark chocolate M&M's for Dr. T and a jar of chunky peanut butter for Bailey? Thanks!

And, just for the record, Scott has declared that he did not go on a "cleaning rampage" over the weekend. It was instigated by the nurses and he was simply assisting. (There! Is that better?)

Have a great day, everyone!
Angie

P.S. Bailey says Hi!

Happy Fathers' Day!

Happy Fathers' Day everybody!

Josie made it back from Florida! We sure missed her, but she had a great time.

Bailey had a great weekend - her dad went on a cleaning rampage though. I haven't even tried to find anything yet, because I know that I won't be able to!

Marissa painted Tom a birdhouse for father's day. It's so precious. She loves her daddy! She hid it behind her bedroom closet door so he wouldn't find it before father's day. She was handling it so carefully.

I was leaving to come back to the hospital and fell flat on our sidewalk. My neighbors came running - thank you Curtis and Toni for taking care of me! No broken bones, but I'm pretty sore. I was trying to kick a large plastic ball back to our garage (I couldn't carry it since I had my arms full of stuff - you know, you can always carry or kick one more thing just to avoid making another trip [I'm rolling my eyes]) and my tennis shoe got caught on the ball. My feet flew out from under me and I landed flat on my back, elbow, and the back of my head. I was kind of worried about my head because I get headaches really easy, but I must not have hit it very hard, because it really is fine. I think my anti-inflammatory is wearing off though because I'm starting to stiffen up. It'll be fun getting out of bed in the morning! I'm just grateful I didn't break anything.

Sorry about all you F-1 fans out there. Sounds like the race was a huge disappointment.

Hope you enjoy the pictures. I have the greatest girls in the world!

Have a great week!!

Angie

Bailey gets another makeover. 

Andrea shares her Lego train with Bailey. 

Bailey and Andrea. 

The sweetest girls in the world! 

The girls dance at their slumber party . . . 

The attack of the giggles! 

. . . and dance some more . . . 

. . . and dance . . . 

. . . and dance! 

Bailey and nurse Jenny in matching hats. 

Isn't Brandon talented? 

Poker night with buddy, Brian Gordon. 

Dr. Farrell teaches Bailey about echos. 

Rissy plays in the echo lab. 

Marissa with one of her monsters. 

Rissy loves these pretty flowers. 

Marissa in the garden. 

A carving in the garden. 

Our squirrel (as yet unnamed). 

Colin and his new "blankie". 

Scott took this picture! 

Bailey's shell mirror she made for her dad for Father's Day. 

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

Miracle Ride Necklace Brings in $

Today was a day of focusing on the outdoors. Marissa and I went down to scope out the courtyard off of the cafeteria and we found outlets, ramps, and smooth sidewalks -- the three main ingredients to a successful outing with the Berlin Heart. We took lots of pictures of flowers and garden structures and even tried to get one of a squirrel, but he just wouldn't wait for Marissa to get set up with the camera -- although we did get very close to him. We've seen him around a lot, so I think we're going to have to give him a name too. He's beginning to rank right up there with Perry (our pigeon) in acquaintences in nature. So, after Marissa and I played a little bit she wanted to "go get our Sweet Bailey" (those were her exact words) so we brought Bailey down to enjoy the courtyard too. It was SUCH a beautiful day -- bright blue sky and pretty white clouds and almost no humidity. It really was gorgeous.

The girls played with sand art and then some clay. I was feeling very, very sleepy so I laid down to get a quick nap. I woke up with a huge headache and then discovered that all sorts of people had popped in during that time (including Scott who brought Bailey and Marissa dinner) and I slept right through it all. I'm usually a light sleeper, so I was surprised to hear I missed all these people. But Scott filled me in. Dr. T wants to take Bailey back to Methodist to talk with a patient of his who might be getting a VAD soon (and I heard she told him no because she didn't trust him anymore making a trip to Methodist - poor guy! It wasn't his fault! The way they badger each other, I'm sure he knew she was just pulling his chain); and she's also been invited to Methodist for a VAD support group meeting (I think it's adult patients and families of those patients - she seems interested in that); and Dr. Darragh, Bailey's cardiologist, wants to spend time with Bailey teaching her some more on how to read echos. She's excited about that too. She likes Dr. Darragh, and, as you can see from the lack of stories I have about him, we don't see a lot of him here, so that will be fun to spend some time with him. Both Dr. Darragh and Bailey love horses, so they have a lot to talk about.

We found out today that none of Bailey's entries made the Riley Christmas cards this year. Isn't that a bummer? With all the people who voted and all the lobbying we did (ya know, like sitting down in the atrium pointing people in the right direction) we thought for sure she would get in. There's always next year. But for the good news, we found out that the necklace Bailey made for the Miracle Ride to be auctioned off went for $118.00! Now THAT's pretty exciting!!

Colin's coming tomorrow for a routine biopsy. He's going to stop in and get his afghan. I'll be sure and take a picture of it for you all.

Bailey and I have discovered that sugar makes Marissa bounce off the walls. I've never really noticed it before, but I guess being confined to a small area like Bailey's room really brings it out in her. Bailey just looked at me with big eyes and said, "Can you please not give her any more sugar, Mom? Ever!" We're having a great time with Marissa this week. I really thought she might get bored being here for such a long time, but she's really done great! I'm so proud of her.

Take care, everyone, and I'll talk to you tomorrow night!
Angie

P.S. Hey, Doug Kerr! It's so good to hear from you again. When we get out of here, we'll have to get together for a visit. I can't even imagine how many years it's been -- 25?!

Reading Echos

Today was a nice day. It started out with Dr. T waking Bailey up around 10:30 just to pester each other. He kept sticking one of Bailey's disposable cameras under the blankets - where Bailey had her face burried - to try and take a picture of her face, but he couldn't get the camera to work. He's a fantastic surgeon . . . in our opinion, the best in the world . . . but he's not much with cameras! He congratulated Marissa on her batting last night - and they stared at each other for a minute. It's fascinating (well, more like entertaining) to watch their relationship develop.

Once Bailey woke up, we went down to the book fair and shopped a little and purchased a few. Bailey and Marissa picked out some good books. We'll be busy reading for a while.

We then met with Dr. Farrell, one of the cardiologists here, and she taught Bailey about the heart and how it shows up on echos. It was incredible! All I remember learning about in science class were the 4 chambers. That's not all there is! It's absolutely amazing all the valves, arteries, and all sorts of "passageways" that lead into and out of the heart, the liver, the lungs, and how they all work together to get the blood moving from one place to another. I was really in awe of all the different parts on the model. (And that was a really cool model!) And when Dr. Farrell showed us a part on the model and then looked at an echo to show us the corresponding image, it was really breathtaking. Out of all the echos I've seen of Bailey's, I would see the images and dream up in my head what parts or areas of the heart I think they were . . . and to find out today that I was all wrong! The heart is an incredibly complex piece of our bodies. I am absolutely amazed at the work the cardiologists do in diagnosing all the heart conditions out there, and even more amazed at the surgeons who get in there and repair them all. (Cindy, no wonder you love your work. It's absolutely fascinating!) I never expected this day to open up a whole new concept of the heart for me, but it sure did. Thank you, Dr. Farrell, for taking the time to share with us just a small fraction of your passion.

And Bailey really caught on quickly and identified parts on the echo. She was talking with Dr. Farrell about whether a transplant patient could become a cardiologist or an echo technician (due to all the immunosuppression medications that they take). That was an interesting conversation. Her answer was pretty much, "Why not?" She said that the danger for her would be infectious diseases and that they don't deal with a lot of infectious diseases in cardiology and, even if and when a case would occur, arrangements would just need to be made for that patient to be seen by another cardiologist. I say, "Dream big! and go for it!" It's really neat to see Bailey develop an interest in this area. Having been the patient, she would be an incredible cardiologist.

After that, we pretty much "vegged out" -- working on a little jewelry, reading a little, watched a little TV, doing a little crocheting, and now, hopefully, going to bed since Bailey didn't go to sleep last night until 3:00 this morning.

Good night, everyone!

Angie

Marissa Batted!!

I had a special day today myself. I was taken out to lunch and shopping at Circle Centre Mall. We had so much fun!! The agenda was to purchase an outfit so Tom and I can go out on a date sometime soon. Can you believe it? I TOLD you they take care of the whole family here. Haha!! It was a fantastic "girlie" time. It's been such a long time since I've done anything like that. Thank you so much, Dr. Cox, for the field trip! And thank you, Beth and Maegan, for taking care of Bailey and Rissy while I was gone. You are very, very special people. Thank you so much!

Bailey did a fantastic job looking after Rissy this afternoon. They were both working on putting chart packets together when I got back -- one of the many jobs they have lined up for Bailey. Tomorrow, I hear she gets to learn about how to read echos with Dr. Farrell. That will be fun!

Dr. T came in with two other people this afternoon to look at the Berlin Heart - they were from a U.S. company that makes VADs. They talked for a little while with Bailey and how well she's doing on the Berlin Heart, etc. Well, with two other strangers in the room, I wasn't about to talk to Dr. T about anything remotely personal, so I didn't mention my field trip that I just returned from. So he left and, about an hour later, he charges back in the room with Beth, his nurse practitioner, and says, "So you had an 'Angie' day today and didn't tell us anything about it, or show us anything . . . ", and so on and so on and so on. I tried to defend myself by saying, "Well, you brought 2 people in here with you - I didn't think they'd be interested! Anyway, it's girlie stuff!" So I went to the shopping bags and started pulling things out. I pulled out this cute little floral sleeveless frilly-like girlie top [how's that for description? haha!] and he looks away and says, "I . . . I don't know what that is." And then he backpedals and says he didn't really want to see it, he was just giving me a hard time. I said, "I know! That's why I'm showing you!" Beth appreciated my purchases!

Bailey had a great poker night with Brian, one of the documentary guys. He brought pizza and Lynn with him (also from the Speedway). We had a great evening of conversation and poker. Bailey won! I don't know how hard Brian fought, though. He made a comment last poker night about how it just didn't feel right beating a Riley kid. Haha!! And Brian called up his buddy Patrick and Bailey got to talk to him again and his little girl. I was trying to listen in, but the sound wouldn't pass through Bailey's brain and out her other ear, so I was out of luck. It was good to see you again, Brian, and very nice to meet you, Lynn. Enjoy the race this weekend!

Josie's calling every night and having a great time in Florida with Tom's family. She's getting lots of sun time but says she's not sunburned, so that's definitely good. I miss her!

And, last but not least, I know you're all sitting on pins and needles waiting for the news . . . Marissa had a softball game tonight and . . . she BATTED!!!! I was so proud of her. I didn't get to go to the game, but she took daddy up there with here to home plate and she did it! I think what got her over the fear was that her desire to run the bases just kept growing and growing and gradually became so much greater than the fear of batting. She also realized that she only has 4 more games left and if she doesn't do it now, she'll run out of opportunities pretty quickly. Tom said she ran to first base and was so excited she couldn't contain herself and started squealing. She's a stinker, though. When he brought her back here to the hospital, I asked her right away if she had fun and then if she batted and she said, "I don't want to tell you yet, let's wait a minute." She made me wait! I'm so proud of her!

Hope everyone out there is doing well! Keep in touch!

Love, Angie

Straight A's

Bailey got her report card in the mail today and she got straight A's! We're so proud of her. She's always got A's and B's, but she thinks this is the first time since 1st grade that she's received all A's. I think that's incredibly impressive that she accomplished that in the midst of these last 6 months of medical hardships. She's an incredibly brave young lady.

They did an echo today on Bailey. Don't really know any results. I think it was just routine to keep an eye on her heart function. Dr. Darragh, her cardiologist, is going to spend some time with Bailey, when he has a little time himself, and give her a crash course on how to read echos. She is so excited about that! She thinks maybe some day she might be an echo technician. Before this hospital visit, Bailey never wanted to do anything in the medical field - but she's really interested in it now. Who knows what she'll be doing in about 8 years.

Lots of crocheting today. Bailey's helping me make another afghan. And, believe it or not, even Marissa is crocheting! She's only 5 years old and already started her first blanket for herself made out of "baby purple" yarn. (You would love it, Lara!) She's very good at it! I'm impressed.

Marissa had a great time at Aunt Debbie's last night. I heard she got to be really good buddies finally with Sophie (a large, sweet family dog).

Not really much more going on. The new machine is working just fine . . . thank goodness. Maybe we can all "bond" with this one. I've seen Perry (the pigeon) a lot in the last couple days flying around with a girlfriend! (or it might be a boyfriend, depending on whatever Perry is.) I'm still trying to get a picture of him, but he's VERY camera shy.

Hope everyone is dodging all the storms out there tonight. Dr. T would be proud that we're NOT taking his Berlin Heart out in the lightning.

Talk to you tomorrow.
Hugs to everyone out there,
Angie

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,
Angie

Another Battery Issue

Josie left for Florida. The tropical storm that's brewing in the Gulf could be hurricane force winds by the time it hits land, which is right where she's headed - but I'm sure Uncle Jim will pull over in Alabama to buy some time. (But it still makes me just a bit nervous.) Josie did a report on an Indiana artist, Nancy Noel, a few weeks ago. Aunt Debbie surprised her this morning by taking Josie to meet her in person! She even got to go to her home and see all the animals on her farm: llamas, dogs, and I don't know what else. She was SO excited! Thank you, Debbie, for giving Josie a special day!

Dr. T took us on a trip to Methodist again today -- the first one since the battery issue. And, believe it or not, we had another battery issue. I was so grateful to have Dr. T with us - of course, we wouldn't have strayed that far without him! He is such an incredibly calming force in the midst of high stress. This time, the problem wasn't because we toured Methodist and ran the battery down; it was decided there was a problem somewhere with the machine - either battery or computer or something. So our profusionists got on the phone with Berlin and they're getting us another machine pretty quickly. Bailey's nervous. She doesn't want to go to sleep because she's afraid it will stop pumping and she won't know it. So the nurses and I have talked to her to reassure her that it won't just stop working and not be noticed. She's doing much better now. Just another day to be especially grateful for Dr. T and his staff.

So, needless to say, we're not leaving Bailey's room until we get another machine. They say it might even come as soon as tomorrow.

Wow, I'm tired. I feel like I've ran a mile. (I know the correct phrase is "ran a marathon", but that's just not realistic. I'd be dead.)

I'm going home in the morning with Marissa. Looking forward to some Rissy time. She's got BIG plans for us -- renting movies and eating popcorn. That's my idea of a perfect evening - especially after today. Haha!

Hope you all have a great weekend! I'll catch you Sunday evening - or before that, if a heart comes in.

Love, Angie

Legos

My friend, Andrea, brought Bailey a huge bucket of Legos complete with a train and station. She's been having a ball playing with these Legos all day long! I finally cleaned up the train tracks and put everything back in the buckets while she was taking a nap earlier this evening, just in time for her to wake up and want to get them all back out so she could show Josie and Marissa. I just KNEW I was picking them up too soon! So, they're in the room right now setting up the train station and building some more . . . something. Thank you, Andrea! They are all enjoying the Legos.

I've been talking with our medical team about the possibility of a bit of boredom slipping into our days now that school and homework are over. We really don't have anything on our schedule now before 1:30 in the afternoon, and nothing after about 3:30. Dr. T has come to take Bailey on field trips this week, but the timing has been off with other things so we haven't been able to take him up on that. So, they're working to try to get a little more structure in our day to replace school. Possibilities are touring different departments to learn more about how things work, or finding Bailey some kind of "job" that she can do to give her some responsibility and help out around the hospital. She got really excited when I mentioned a job. I was quick to make sure she knew it wasn't a paying job, and she said she knew that and was still very excited. So, hopefully they can come up with something along those lines to keep her busy and they can benefit from it too.

Josie and Marissa are here to spend the night tonight. Josie's leaving for Florida tomorrow night with her cousins for a whole week. I don't see her much during the week anyway, but just knowing she'll be that far away is a little unsettling for me. I knew she'll have a great time, but I'll miss her! Rissy will be spending most of next week with us here at the hospital. If she gets bored or tired of being here, Tom can come pick her up in the afternoons, but he's working nights again and will be sleeping most of the day. Hopefully that will work out fine.

I accused Dr. T of not being any fun anymore since he's been reading this blog page - he's afraid I'm going to post more stories about him. Well, of course! He's the biggest part of our entertainment around here. But he says he's not reading it anymore. Really, I've heard that summer is a busy surgery time because that's when a lot of non-emergency surgeries are scheduled to avoid the winter respiratory season. (They wanted to wait until summer to do Bailey's surgery, but she couldn't wait that long.) And the Heart Center is packed up here and one of the nurses said the entire hospital is packed, so I think everyone's just crazy busy right now.

Please continue to pray for the donor and his/her family. Our day will come.

Love you all,
Angie

Blueberry Monster Shakes

Not much going on today. Now that school is over and we don't have any homework, I think today is the first time we watched a movie all the way through without interruption! We watched "Can't Buy Me Love", of course, with Patrick Dempsey. It was good! It's funny watching it, though, and having met him. We were laughing at his dancing -- I think Bailey should ask him if he can still dance like that. Haha!

Speaking of Patrick, Bailey called him last night and left a message thanking him for visiting. She was really nervous, but I was so proud of her that she went for it. He called her back today! She hung up the phone and I jumped in with, "What'd he say?!" Bailey simply says, "He has two cats and drinks Blueberry Monster protein shakes." I did squeeze some more information out of her finally. I think she was just so excited that he called that she forgot what they talked about!

Did a little shopping in the gift shop today. Bailey spent about $60 and I spent $2.

Bailey's sitting next to me trying to think of something else I can report on, but we're pretty boring, I guess!

Talk to you later!

Angie

Another Makeover Today

I woke up this morning and looked around the room for any signs of developments throughout the night or morning (i.e., any notes left by the night nurse, any signs on the door to wear a mask upon entering, etc.). Everything looked like it did when we left it upon going to bed, so I jumped in the shower. When I came out of the bathroom, I noticed something strange. One of the strings of paper cranes was laying on the floor by Bailey's bed. First of all, it's strange that I didn't notice it when I woke up. I looked at the ceiling, and saw that a string was missing by the door next to Dr. T's M&M stash. I concluded that it must have fallen throughout the night (which is weird that I didn't hear it), and someone placed it next to Bailey's bed so we could hang it back up (which means it must have been a doctor, because a nurse would have re-hung it). I was fine with that conclusion, although there were a few things in it that I thought didn't match up perfectly . . . but, gee whiz, it's not THAT detrimental that I solve this mystery. So I hung it back up over in another corner out of the way of the door, so no one would accidentally knock it down again, if that is, in fact, what might have happened. So, Bailey slept for another couple hours and, when she woke up, she nonchalantly said, "You know, Mom, I had a dream last night that someone put one of those things [pointing to a paper crane string] on my head." Now, THAT's awfully coincidental. As my mind churned, I looked at her and said, "Are you SURE that was a dream?" So I explained the whole "mystery" I was trying to solve this morning, and I said, "I wonder if Dr. T was messing with you again!" She looked at the laptop on her Berlin Heart to see if he had been in to cycled it already this morning, and he had - he had been in while I was in the shower. We started laughing, and figured that Dr. T had been up to something.

So, Dr. T popped in a little later looking all professional and innocent as he always does, and I told him about the "dream" Bailey had last night. He couldn't keep a straight face! He laughed and said how unfortunate it was that it had fallen to the floor because he had it all tucked in and framing her face very nicely! I was just sorry I had missed it! Haha!!

We heard it was very hot out today. We didn't notice. We stayed inside, and Bailey got another makeover consisting of highlights, makeup, pedicure, and her hair curled and stacked up all pretty with sparklies in it, like she was going to the prom. She was so pretty! Dr. T said she "cleans up pretty good."

Then we did a lot of knitting, crocheting, cross-stitching, and beading today. I finished up our second afghan. It's supposed to go to Colin, but Bailey likes it so much she's trying to talk me into giving this one to her and making Colin another one. Oh, sure! What else do I have to do?!

Well, not much else to report for now. No radio appearances, no celebrities coming to visit, no fancy field trips, no camera crews . . . just another day hanging out at Riley. You know, if I can't be at home with my family, there's no one else I'd rather spend these 4 months with than the staff here at Riley. They take such good care of us.

Oh, and Bailey's day nurse who she's had for the last few days, Amanda, was whining that she wasn't on Bailey's website anywhere (other than the picture of her and Mary with gloves shoved up their noses). She wanted me to tell everyone that she recently got married and just returned from a 2-week honeymoon in Hawaii. There! Are you happy, Amanda?

Have a good night, everyone!

Talk to you tomorrow,
Angie

An Uneventful Day

It's always good to have an uneventful day here at Riley. However, for some reason, I've been thinking a lot about transplant surgery and how scary that's going to be. It sounds simple that we're just waiting on a transplant, but that, obviously, involves another open heart surgery, possible struggle with rejection, and recovery. Bailey's situation is nothing like they've dealt with before, but it's very easy for me to have all the trust in the doctors here. I know they'll make the decisions they feel are the best for Bailey. That's one good thing about hanging around here for so long -- I get to know everyone on a more personal basis, and I have no doubt that they have Bailey's best interest at heart and will look after her as if she were their own daughter. Maybe there's a feeling I'm getting from Above, or maybe it's just hormones, or maybe it's that they're changing the way they're listing Bailey on the transplant list again (not to require a crossmatch for out-of-state donors), but I'm feeling like I need to be preparing for something . . . I assume transplant surgery. Maybe there's something to it, maybe there's not.

With no more homework, Bailey's spent a lot of time today working on jewelry and filling her backlog of orders. She does such a nice job. I try to help out a bit -- or just play with the beads -- but she does a much better job than I do.

Bailey had kind of a bum day today. She didn't really feel like doing much earlier on in the day. It doesn't happen really very often, so it's OK for her to have a bum day on occasion. She's handling her stay here very well. She still wishes to go home every night, but I'm very proud of her patience and how she makes the most of every opportunity to enjoy our stay here.

Instead of rambling on and on, I should go. I'll see you tomorrow.

Love to all,
Angie

Miracle Ride

What a fun time! I brought Josie and Marissa back with me this morning to watch the motorcycles ride by the hospital in the Miracle Ride. (The Miracle Ride consists of thousands of motorcycle riders raising money for Riley. They all ride by the hospital and end up at the Speedway.) We found an outlet outside that Bailey could plug her Berlin Heart into, and we watched, waved, and held up "Thank You" signs for 56 minutes as all the motorcycles rode by. How cool to see all different kinds of bikes and all different kinds of people riding by, waving back to us with big smiles on their faces, and some of them throwing things like scarves, candy, and stuffed animals to the kids. The sidewalk was lined with kids in wheelchairs, kids with I.V. poles, kids in little red wagons, kids with hair, kids without hair, and one kid with a Berlin Heart, together with their nurses and families waving to the bikers and waving signs. What a neat experience! Thank you, Miracle Riders!!!

Bailey had a good weekend. She was on the radio again yesterday afternoon to help WFMS wrap up the radiothon. She announced the final tally, which was approximately $371,000. What a success! Thanks to everyone out there who made donations to the radiothon. Trust us, it's a worthy cause.

Marissa and Josie are spending the night tonight. We've been playing cards and watching TV. Marissa, of course, is the first one to fall asleep. It takes her about 45 seconds once she stretches out and gets all comfy.

Well, let's see what this week brings. With no homework, we might be watching lots of movies.

Take care, everyone, and have a great week!

Love,
Angie

Indianapolis Colts visit. 

Miss America contestants visit (L-R: Miss Pennsylvania, Miss Texas, and Miss Nevada). 

Bailey gets a little over-excited with her X-Box.