Wednesday, July 27, 2005

Bailey's Doing Well

Hi guys! I felt lost from you since it's been 2 days since I've posted. But I guess I can't post forever. I'll try to gradually ween myself from sharing our lives with you all.

Bailey is doing well. She wanted to go shopping yesterday, believe it or not! I wouldn't do it - I told her we needed to rest for a few days. She's quite tired and still very sore, but she's enjoying being home. She was just walking around the house looking at all the nick-nacks reminiscing. Dressing changes are going well. She told me I did a good job! I definitely had good teachers. I watched about 350 dressing changes in the last 6 months. I think I could do it blindfolded, in fact. The PICC line, however, is another story. Bailey and I sat down yesterday morning (Tues.) - our first full day home - to talk ourselves through flushing it, and, would you believe, it was clotted. We called our homecare nurse out and she spent about 4 to 5 hours here trying to bust up the clot (using TPA), but she had no luck. We were on the phone with Riley, and they gave us instructions to leave the TPA medicine in overnight and if we still couldn't get it clear this morning, we had to go into Riley to have it taken out . . . and that's exactly what happened. The homecare nurse came back this morning and had no luck. So, we got to see some of our medical team again today. That makes it a little easier on separation anxiety - knowing they're only a phone call and 15 minutes away. Then, we got back in time to go to a movie this afternoon - Charlie and the Chocolate Factory. It was entertaining. Johnny Depp made it very interesting. I enjoy his crazy characters he plays. Bailey fell asleep about15 minutes into the movie and we had to wake her up when it was over. I guess we'll have to rent it now when it comes out on video. Haha!

I still have anxious moments at times here at home. I'm sure it's separation anxiety, but I get little panicky moments when I think this is all too good to be true. I was nervous going into the hospital today because I thought they might keep us, I guess. I suppose that's to be expected, having spent such a long time away from home.

Tom's working like crazy on Bailey's room. I helped out a little bit today but not much, since we had to squeeze a hospital visit and a movie into our day. He ran into a couple setbacks and hopes to have it done by the weekend. We don't have anything planned tomorrow, so I'm hoping to help out a lot then. I brought a hand-held Tetris game home from the hospital (Child Life gave it to us way back in January on pre-op day), and I had to hide it from Tom because he spent about 4 hours playing it yesterday. He was laughing at himself today. He asked me what I did with the game and I told him I hid it. He said he came downstairs looking for it while we were at the movie and he couldn't find it, so he gave up and went back to work on Bailey's room. I told him that's exactly what my plan was!! Haha!

Have a good night, everyone, and I'll talk to you soon.



Monday, July 25, 2005


Oh, my gosh! I have my family back again!!

What a day! We woke up this morning at 7:00 when Jenny, our night nurse, came in to say goodbye and, of course, I cried. I love Jenny so much. We've already got plans to go with her to a movie on Wednesday, assuming Bailey's feeling up to it. We had to make plans of some kind just so saying goodbye was more like "see you soon" - that's the only way it was bearable. We then walked down to get a chest X-ray and then an echo, and Dr. Darragh gave his stamp of approval on going home today. So, after lots of discharge orders, dressing change training, medicine schedule, prescriptions, and saying additional goodbyes, we left our room around 4:00. We were walking out the door to the patient pick-up/drop off (with about 10 or so of our medical team seeing us off) and Bailey just stopped right in front of a parked limo and looked around. Tom said, "Where you going, Bailey?" She said, "Well, where's the van?" And right then, the limo driver opened the door for Bailey. It was so cool! She was soooooo excited. I tell you, it's difficult to time it to try and get a limo to the hospital - there's a lot involved in getting discharged. But the medical team worked with us the best they could and we managed to work it our pretty good. He only had to wait on us about 30 minutes. The girls and Nancy and I rode home in the limo. Then, when we drove into our neighborhood, Bailey saw lots of cars lining our street and said, "Man! Somebody's having a family reunion or something." And just then, she saw the "welcome home" signs and all our neighbors and family standing in front of our house. She didn't cry, but I did! We have the best neighbors and family! Thank you so much, guys, for welcoming Bailey home. And thank you for the food we found on our table! You guys are certainly the best! So, the limo driver then took all the other kids on a ride.

Bailey squealed when she saw her room. She loves it! Even though it's not finished, it's close enough that she can get a really good idea of what the finished room will look like. Unfortunately, she didn't have a bed to jump on - it's standing on its side in our living room - but we'll make do.

She's feeling really good today. She's only taken Tylenol with codeine once today and she helped me make dinner. She yelled to me from the family room and said, "Come here, Mom, and let me show you something I haven't done in 6 months!" I walked in there and she was laying on the couch on her stomach! She's so sweet. She really is enjoying being home. She came home with a PIC line, so we've got some special instructions for that. And we have to continue the canula site dressing change twice a day for a while. And we have to take her blood pressure and watch her "ins and outs". We have a follow-up appointment this Friday, and we have lots of numbers in case we have any questions or concerns. I think we're already doing a little better with the separation anxiety. It's just been a crazy time these past 6 months - especially the past few weeks. And to go home just 7 days after surgery is just unbelievable. We have truly been blessed.

Before we left the hospital, we got to take one more ride on the train to Methodist with Dr. T. That was nice. And we didn't even have to rush to an outlet to plug in! We got to visit two adult patients of his who are on VAD's. I hope it gave them some encouragement to see living proof of what the VAD's can do.

Well, I'm gonna go crash on my couch next to Bailey and see if I can get rid of this headache which, I am sure, is just from all the anxiety and excitement that this day has brought. I'll continue to post on a periodic basis, but, I tell ya, this computer is SLOWWWW. We have a dial-up connection. Hopefully soon we'll get a new computer and quicker internet access. But we have lots of time for that.

For some reason, I seem to be having a hard time signing off tonight. I just feel like I want to sit here and talk to you guys all night long. I just can't seem to get enough thank you's out to everyone involved and I just can't seem to express my gratitude to God as much as I'm feeling it in my heart. And I guess this means that our adventure has come to some sort of an end. You would think I would just say "See ya!" and run as fast as I can far away from this situation, but I'm not feeling like that at all. The friendships that we've made this past 6 months are deeper than just the Berlin Heart and a hospital stay - they'll be with us for good! We've got contact information for all our doctors and nurses and, believe me, we'll use it. We're not running from this adventure - we're embracing it to begin a new chapter in our lives. Thank you to all for taking such good care of us. See you again soon!

Love, Angie

Sunday, July 24, 2005

Maybe Home Tomorrow?!

Man! This is moving fast. I know that sounds kind of crazy since we've been here nearly 6 months, but they're talking about sending us home tomorrow (Monday). I made it home this weekend to frantically clean the house . . . and it's probably safe to tell you about a little secret that's been in the works for 6 months. Tom's been re-doing Bailey's room since we've been in here. He's built bookshelves and a window seat along one wall, new furniture, new closet, hardwood floors - the works! We have our own Extreme Makeover Home Edition deadline on our hands. He's home right now with 3 of his friends painting like a crazy man. He told me to pull Dr. T aside and ask him if he can hold on to her for a couple more days to give him time to finish the room! Then he mentioned Bailey and I spending a night at a hotel before we come home. I think I said something like, "Uh . . . No!" He's done an incredible job with it and he's so close to being done. Even if it isn't done by the time we get home, she'll still be so surprised! I can't wait to see her face.

Bailey took her first walk around the Heart Center - without the Berlin Heart - yesterday. She went down her first flight of stairs in 6 months! She's feeling pretty good. Still a little tired and sore, but improving every day. Her rhythm still looks really good too! So far, so good. But the possibility of going home so soon really stirs up some emotions for us. I've already cried tonight saying goodbye to one of her nurses. And Bailey's looking a little sad tonight, and said she's afraid she'll go home and have to turn around and come back. I think just being looked after for so long with watchful eyes and feeling safe and taken care of here at Riley where they jump right on anything that might need attention, I think she might just be feeling a little insecure. And I know what she means! I'm finding myself feeling a little nervous about going home and not having that yellow PA number to look at. We talked about it and decided that our job is twofold: to report any symptoms that might occur so that the doctors can deal with them; and, secondly, to just enjoy every single day that we are given in this life, which is something that we all need to focus on. Sure, we're scared that things might take a turn for the worse when we get home, whether it be a month down the road or 2 years down the road, but we'll take whatever is sent our direction and we are going to do our best to not sit around and worry about something that might not ever happen. That would be such a waste of good life. My prayer, of course, is that Bailey won't have to have any other surgery on her heart for the rest of her life and, not only that, but that it will continue to work like a charm. I think Bailey has really opened the eyes of modern medicine here. This might save countless children in the future from having a heart transplant by the doctors giving the Berlin Heart more time for their hearts to heal. I have a feeling we'll never know how big this medical breakthrough might become, and I also have a feeling we'll never know how big this prayer chain is that you all out there have had going for Bailey.

I can only just begin to thank you all for your prayers. We've all discovered here just how powerful prayer can be. One question I might have for Dr. T is how does it feel to work so closely with God? We all have our faith, and we all want to believe in miracles, but when a miracle happens right before your eyes, it's just spiritually lifechanging. I struggle here with not feeling worthy for all the prayers and for the miracles that God has shown us in the last 6 months, but I just keep telling myself that there's nothing any of us can ever do to earn God's gifts. We just have to recognize those gifts as gifts from God, be incredibly grateful for them, and turn around and give others our own gifts of love.

I didn't mean to make this posting such an in-depth message, but it just rolled off my fingers. I love you all out there so much, and I'll post something as soon as we hear whether we really are going home tomorrow or not. I'm still shaking my head in disbelief. Isn't it WONDERFUL?!!

Rest well everyone . . . we are!


Friday, July 22, 2005

Back on the Heart Center

Yeah!! We're back! Such a sigh of relief.

We were still in ICU when the Thunderbirds came this morning, but they found Bailey. Such nice guys. And very impressive! Dr. T told them her story when they came in, and they were genuinely happy for us and impressed with all that Bailey's been through. They told her she was very brave and they were so excited for her that everything's going so well. What nice guys.

Then, our next step this morning was being cardioverted. Bailey still had an irregular heartbeat, so they decided to get her back in rhythm. That wasn't any big deal - except for when it was happening, of course. We've been through it before and knew exactly what to expect and how long it would take, but you always get this certain feeling of something sitting right at the bottom of your throat just ready to come up if the moment should present itself. But Scott and I were able to stay with her until the very last moment as she fell asleep, then they asked us to step out in the hallway for a few minutes, and it was literally a few minutes. There were so many medical people in that little room that when they were all done, I told Scott it looked like a bunch of ants filing out of their ant hole when they all started coming out of the room.

So, that's all over and then they started preparing the transfer orders to come up to the Heart Center, and here we are! Bailey's moving around really well. She made it to the bedside toilet 3 times this morning. She says her chest hurts a little, but not too bad. She still has her PCA (I think it is, and I think it stands for patient controlled anesthesia?) that she can push every 15 minutes, but she's using that less and less every day. She got to put underwear and shorts on today, so she's starting to feel more like a person now. We still can't get a shirt on her because of all the lines going in and out of her - a PIC line, an arterial line, and an IV with about 10 or so lines running meds in. I told her we needed a tube top - something that she can step into and just slide it up! Hey! A "Survivor" buff would probably work. That would be cool!

Can we really start to think about going home now?! Bailey's been saying this morning that it's so strange to think that we might be home next week or sometime soon thereafter. She's absolutely right. It will be strange to go home and be able to unpack my bags. I don't know if I can remember where all my toiletries go in our bathroom! We'll have to re-familiarize ourselves with our own house.

I'm going to go back in Bailey's room now and hang a few things on the walls and get Dr. T's M&M's set up again. He's been whining about those all week now!

Have a wonderful afternoon, everyone!

Love to you all,

Thursday, July 21, 2005


Pressures were still in the 30's and 40's when they removed the PA-line today (the line that attached directly to her heart to take pressure readings) (But, since the PA-line is gone, we don't have a yellow number to stare at anymore.) Dr. T removed the PA line, the RA line, the chest tubes and the canula site packing (which is a very interesting story in itself) early this afternoon. Bailey wasn't too happy about that idea - she was very, very scared. The PA and RA lines are little thin plastic-covered wires but the chest tubes are quite a bit thicker. Even though they say it doesn't hurt to take them out (just feels strange), she got so upset that they decided to drug her to get it done. So, they did just that. I was standing next to Bailey's bed holding her hand and, when she was finally out of it, Dr. T started removing lines. It's kind of gross to see these thin wires being pulled out of her body that are quite long because they go into her heart, but he pulled them out very easy and successfully. Then, he took tweezers to grab what I thought was just a piece of gauze sitting on her canula sites, and he lifted them off and kept lifting and lifting and finally pulled out a long 8 or 10-inch piece of about 1/2" wide gauze stuff. I guess I had quite the look on my face because he was holding it high above Bailey's belly, paused to look at me, and just laughed. I think they thought I might pass out. I knew I wouldn't pass out, but my stomach did turn over a bit. I think they got a little kick out of that. I told Dr. T he could have warned me that those were not just patches. He just laughed at me. Then he moved to the chest tubes and I decided to look away for those too. I had seen those pulled out after previous surgeries, but since my stomach already suffered a little shock, I decided to look away for those as well. Bailey was very happy when she came around again to find out that everything was out.

We were packing up our things getting ready to move to the Heart Center and then she developed A-flutter or fib. We're told that removing those lines from the heart and trigger it in people predisposed to that anyway. So, her heart is beating irregularly right now. They started a medication that they're hopeful will straighten it out but, if it doesn't, they will have to cardiovert her. I guess, in the scheme of things, it's no big deal, but it's enough to keep her in ICU at least another night. The Thunderbird pilots are coming to visit Riley tomorrow morning and Dr. T's hoping to have her up on the Heart Center by the time they get here so she can visit with them. They're in Terre Haute for an air show this weekend and wanted to come visit the kids here at Riley. Dr. T knows them and is very excited about their visit. I hope we get to see them.

Scott and I were thinking back to January and February, and she had to be cardioverted after they put her on the Berlin Heart because of A-fib. One thing we can say for certain is that Bailey never provides them or us with a dull moment around here.

We're getting lots of visits from her nurses on the Heart Center. They are just as anxious as we are to get back up there. The candy bowl is empty. I'm surprised they haven't brought it down and set it outside our door in ICU! They tell me not to fill it up again because they all have to start their diets, but we get to fill it up at least a few more times before we leave.

Bailey's feeling much better today and awake a little more. She's taking a few bites of soup and keeping everything down. Who knows? She might be taking her first walk pretty soon. THAT will be exciting.

Catch you all later.

Wednesday, July 20, 2005

PA Pressures in the 30's!!

I spent all night last night opening one eye and peeking up at that yellow number on the monitor. After yesterday, I was so happy to see the 50's again early yesterday evening. (We were in the 50's yesterday and suddenly over a half-hour period they just decided to go up, and up, and up and ended up over 100. During the 15 minutes or so that they hovered over 100 and that the team was out in the hall discussing what to do about it, I found it adequate time to bring back visions of before the Berlin Heart when we were talking about a heart and lung transplant and, of course, one vision led to another, so I closed my eyes and tried to enter denial by sleeping. Yeah right. Then, after that 15 minutes, they just started coming back down and after about a half hour, ended up right back in the 50's.) So, after that episode yesterday, I was happy to see the 50's. Then, I just kept an eye on them through the night and they reached the 40's before midnight. Then, I saw the 30's!!! and they stayed there consistently the rest of the night. (I even saw 29 a couple of times.) I wanted so badly to call Scott in the middle of the night but knew he would probably have a stroke just at hearing the phone ring that late at night. And, then, if he recovered from the stroke, he would be so excited that he wouldn't be able to go back to sleep. Also, I just wanted to lay there and watch them and see that they didn't go back up. Dr. Gudjonssen, one of the surgery doctors who has been with us night and day through these past 5 1/2 months - a really great guy - came in this morning at 6:00 to check on us like he does every day. Normally he whispers so he won't wake us up, but this time, I hear the door slide open, a 2-second delay, and he nearly yells, "PA's at 32!" I'm sure he didn't yell, but at 6:00 in the morning, it seemed like it. He grabbed the stethoscope and listened to her and said, "Lungs are clear, bowel sounds are normal, chest tubes look good," and he turned to the nurse and said, "Well done, well done." "Well done" around here actually means "what a remarkable young lady to go through all she's been through and come out better than on top and, the best part of it all, is that we get to see it with our own eyes". That's what "well done" actually means.

It's just incredible that her heart is functioning so well. It must really like having the two "garden hoses" removed from it so it can work on its own. Unbelievable!! I just sit in awe of God.

They're talking about moving to the Heart Center tomorrow (Thurs.). That's fine that they keep moving it back a day. Bailey's just feeling pretty bad. She's been vomiting and isn't even allowed to have ice chips because they're trying to dry her out really good for PA pressure reasons. But hopefully today will see her feeling better. She slept really good last night and hasn't vomited since early, early morning.

I just sat out in the courtyard for a brunch break and shared my food with two "Cubs" (squirrels). I thought there was only one "Cub", but there are two! And, boy, do they like french fries. One even took one right out of my hand. They are so sweet and gentle creatures. I just sat and stared at them thinking how incredible God is and how much fun he must have creating these creatures and seeing how much fun we have with them. He created every little hair on his big, bushy, beautiful tail. And he took a paintbrush and made perfect little black streaks on each and every one. Just beautiful.

I've had my break and it's time to go "tag" Nancy. Well, I do have to tell one more thing. Scott called this morning at 8:00 for an update on Bailey's night. When I told him that her PA pressures were in the 30's, he, of course, was extremely elated and said he thought he was going to cry. After they got to the hospital, Nancy confirmed he did. She found him laying on the floor crying. She, of course, was scared that something happened and was equally elated to find out the incredibly good news. I wish you all could feel this incredibly happy feeling we have right now. I know it's a crazy roller coaster, but we're enjoying the top of the hill right now!

Love to all, and thank God for another day!


Tuesday, July 19, 2005

The Night Went Well

Bailey had a great night, and doing even better today. They're slowing down a bit on their projection for going back to the Heart Center today (maybe tomorrow) - they're still working with her medication to find the right balance. She's also not been able to keep drinks down, so she's still on ice chips - which makes her very irritable, she wants a tall glass of ice water!

Today's a day when we need to focus on the overall picture and let the doctors worry about the details. We end up staring at that yellow number on the monitor (the PA pressure) like a deer caught in the headlights, and that's just crazy, because that number is bouncing all over the place right now. But the doctors are doing a great job of popping in and reassuring us how well she's doing and that she's "remarkable".

She's falling in and out of sleep quite a bit, but seems to be resting well. She likes to sleep holding her cup of ice chips. I try to pry it away and she feels it move and wakes right up. (Reminds me of when she was a baby and trying to put her in her crib at night - I would rock her and rock her and rock her before she was completely sound asleep and she would still wake right back up as soon as her little feet touched the crib mattress.)

Guess who came to visit her last night about 10:00? Jeff Gordon! He was here most of the day yesterday shooting a promotional spot for the Riley Christmas stuff, and he stopped in ICU to talk with Bailey for a minute before he left. He was so nice. Scott told him that he was sorry for the race on Sunday, and he just shrugged it off and said, "Hey, that's nothing. This right here is what it's all about." He was so happy for us that the day went so well. He signed a couple things for her and let us take his picture with her. He told Bailey, "I know you don't feel very good, but can you give me a little smile for the picture, Bailey?" And she gave him a big smile. And, the best thing is, she even remembers it today!

I'm still just speechless and stunned at this script that God has written. This is just huge for all of us and for the medical world. Dr. T said that there's nothing that a transplant would help right now since her heart is working so well. I find myself just giving thanks to God but not being able to go beyond, "Thank you, God!" Just where do we begin in thanking God for such an incredible miracle? We had no guarantees of any kind going into this "adventure", and God ends up dumping better than we could ask for right in our laps. I am just so grateful that I just fall on my knees and cry.

Thank you, God, for every single day that we get.

Love you all,

Monday, July 18, 2005

Surgery Went Incredibly Well

The day started out at 3:00 a.m. this morning when Bailey and I finally fell asleep. With a whole 2 1/2 hours of sleep, I woke up at 5:30 and got ready for the day. Another surgery day. Couldn't stop thinking about what the day might bring. I woke Bailey up at 6:30 and before she even opened her eyes, she said, "I don't want to go to surgery." She was pretty scared this morning. Luckily, they took her in at 7:00 so we didn't have to wait around too long. They let one of her night nurses, Jenny, scrub up and go back there with her until they got her to sleep. That helped her out quite a bit.

[Well, if I don't speed up a bit, I'll be here for a while.]

They got her to sleep and did lots of echos and various tests continuing to check on the function of her heart to make sure they were making the right decision by removing the Berlin Heart. It wasn't until about 1:00 this afternoon that they decided to go ahead and take it out. That was the longest morning. Then, not too long after that, they said she was off the by-pass and doing great. We got to talk to Dr. T about 4:00. He was very pleased. He said her "numbers" were better today than they were even at last week's cath. She's got a little leak in her mitral (sp?) valve that they thought they might try to repair while they were in their, but Dr. T told us after surgery that the left side of her heart is working so well that there was nothing that the repaired mitral valve would improve, so they decided not to do anything with it. And, that can be controlled - they don't seem to be worried about that at all. Dr. T said there was a dramatic improvement in the function of her heart, so much so that he felt good in their decision to remove the device. I really haven't seen him this happy outside of a water fight! He really had nothing negative to say. (And the documentary team who was filming the surgery let us in on some things they heard in surgery regarding how happy everyone was with everything.)

So, we finally got to see her about 6:00 in ICU. I hadn't even walked in the room yet (without gloves and mask, I might add) and she looked over at me and waved. That was shocking. They were already talking about taking the breathing tube out - and that kind of scared me since coming off the ventilator back in early February was quite an ordeal. So, after holding her hand a while, I went down to get some dinner, thinking that maybe they'd have the tube out by the time I got back and I wouldn't have to be there for it this time. Well, Scott came running through the cafeteria and said, "They're ready to take the tube out but she won't let them without you there, so you gotta get up there - they're all waiting on you." Well, that blew my plan, but I managed to get up there and ran into Dr. T right outside her room. I whispered to him that I didn't think I wanted to be in there for this and he said, "No, it'll be all right." Sometimes, that's all you need to hear. Bailey and I both braved through it and it went fast and easy. I got to finish my dinner, and came back to word that we might be going back to the Heart Center tomorrow, since she's doing so well. She was already giving Dr. T a little grief. It's good to see her spuny already! She's not in any pain, except for her sore throat, and is in very good spirits. She looked at me and said, "I'm so happy," as her eyes rolled shut again. One of her biggest worries with this surgery is getting her chest (drainage) tubes pulled out (in a few days). After she saw them a little bit ago, she said, "I was worried about getting my chest tubes out, but I was looking at them, and they're nothin'!" I suppose they do look like nothin' compared to the Berlin Heart canulas. There are just two little square gauze patches on her belly where the canulas used to enter her body. The reporting nurse told us during surgery that she was unhooked from the Berlin Heart and I said, "You mean it's further than 6 feet away from her?" She said, "Yes, it's in another room."

I just can't explain the craziness that today has been. Being so excited about the possibility of her heart healing and going home soon, but at the same time, still not knowing for several hours if it would actually happen or not. But they didn't change their minds. They took it out! And she's doing incredibly well! Dr. T passed me outside her room in ICU a few minutes ago and he simply looked at me with a smile and said, "Who'da thought?"

Another incredible day. Another crazy incredible day. Lots of tears, lots of fear, lots of family, lots of friends, lots of sleepless hours, lots of ecstatic joy. I think we can finally let ourselves be completely and fully happy.

We don't know what the future holds. We're hoping (along with the doctors) that this will have been her last surgery she'll ever need. It's possible she'll still need a transplant at some point in the future - whether it be 6 months, 2 years, 10 years, etc. - but for now, we're going to enjoy it and live life to the full!

I love you all, and thank you for hanging in there with us.


Sunday, July 17, 2005

Surgery in the Morning

Not much going on. The room is completely bare and now echos. We're still working on our 5000 rummy game, but at least we're in the 4000's now. Bailey has to stop eating at midnight, so she's doing her best to shove it all in while she can! She's eating the snacks that I bought her for when she's in ICU.

Hope you enjoyed the pictures. Bailey's mad at me for putting "Bailey-Lou-Who" in there. Did you see our squirrel named Bear? We named him Bear because he gets so close to us that he looks like he could just scratch our eyeballs out with one swipe. There's another squirrel out there. His name is Cub because he's really scruffy and has a long way to go before he becomes as impressive as Bear.

So, the surgery is in the morning. Hm. We've got the day-before-surgery jitters. We're trying to keep our minds busy by playing cards, eating, and watching Grey's Anatomy. It's working pretty good, but we still get weirded out a little.

Well, I think I'll cut this short and try to get some sleep - 5:30 is going to come very quickly.

Thank you for your prayers!

Love to all,

Saturday, July 16, 2005

Bailey celebrates the 4th with red-streaked hair . . . and because Dr. T told her not to do it. Posted by Picasa

The girls show off their streaks. Posted by Picasa

Three peas in a pod. Posted by Picasa

Marissa, after a little too much sugar. Posted by Picasa

Josie, me, and Marissa playing cards in the cafeteria - it was too hot to play outside. Posted by Picasa

Bailey's 4th of July party at the helipad. Posted by Picasa

Tom, Uncle Giff and Aunt Vickie. Posted by Picasa

Our view for the downtown fireworks. Posted by Picasa

The helipad. Posted by Picasa

One of our friendly neighbors, Bear. Posted by Picasa

The girls tye-dye socks. Posted by Picasa

Some more dancing. Posted by Picasa

A heart-shaped Cheerio. (Yes, we've been here too long.) Posted by Picasa

"Bailey-Lou-Who" post-cath. (Her Dad took this picture!) Posted by Picasa

Bailey gets an ice cream came from Scott's office. Posted by Picasa

Bailey receives the "Excellence in Med Taking Award" from one of her favorite nurses, Tanya. Posted by Picasa

Bailey pours the non-alcoholic champaigne to celebrate the decision to remove the Berlin Heart. Posted by Picasa

Rissy and Josie snuggling on the bench (the one that opens up into a "nice, fluffy king-size bed"). Posted by Picasa

Bailey and one of her favorite night nurses, Trina. Posted by Picasa

It looks official, but he's preparing for a water fight. Posted by Picasa

Bailey crouches behind the Berlin Heart. Posted by Picasa

Bailey takes one last shot. Posted by Picasa

Bailey with Dr. Farrell, a cardiologist and good buddy. Posted by Picasa

Bailey with two of her favorite nurses, Jennifer and Maegan. Posted by Picasa

Dr. T looking for another fight. Posted by Picasa