Monday, December 31, 2007

Happy New Year!

Happy New Year, everybody! We had the best Christmas ever, and are having the best New Year's ever. Bailey continues to do fabulous! Her weight is still going down. She is now wearing her skin-tight T-shirts (you know the teen style) -- I can't tell you how wonderful it is that she no longer wears XL t-shirts and sweatshirts. She is having the time of her life. We are so happy. She made us (low sodium) chili tonight for our little New Year's Eve party. Rissy has her cousins, Emily and Lyndie, over here; Josie has her cousin, Erica and a friend Caroline; and Bailey has Paisley over and their friend (also our neighbor) Brian is here visiting. We're breaking out the non-alcoholic sparkling cranberry/apple juice at midnight! We are celebrating. Life is good.

I wish you all (as well as us!) a wonderful and healthy 2008!!

Love you all,

Tuesday, December 25, 2007

Merry Christmas!

We are having the best Christmas ever. Bailey's feeling really, really good and her weight (belly) keeps going down - slowly but surely. We've been not only sticking to the 2000mg low sodium diet, but blowing it out of the water! It seems to really be giving Bailey's heart a good jump start after such a big surgery. Dr. Bramlet (Bailey's favorite cardiology fellow - and very close to the top of her list of all-time favorite people) gave us a pep talk on the sodium before we left the hospital and it has helped us out a lot. Thank you Dr. B! And seeing the great results on the scale helps tremendously too.

It is good to be home . . . it is good to have Bailey here . . . it is good to be a family . . . it is good to be with extended family for the holidays. They're so wonderful - they're cooking low-sodium dishes for the family gatherings too!

I can't stay on here too long because we have more family to visit today, but just wanted to let you know I'm thinking about all of you and hoping your Christmas is wonderful as well!


P.S. Josie got her cell phone and Rissy got a karaoke machine! We've been listening to Hannah Montana and H.S. Musical all morning. Bailey and I were well taken care of too, but we're just glad to be here. Life is good.

Tuesday, December 18, 2007

Holding Steady

Hi everybody! Bailey had a follow-up appointment with Dr. D today and "passed". She's feeling really, really good. He's still following her closely to see if her surgery has fixed things. It's still a slow and steady process. She gets to go back to school after Christmas break - probably just for half days until she can build her energy back up. We have only heard from one of her teachers and she's coming every week to help Bailey, but the others haven't come since she's been home from the hospital. So, it looks like she'll have double work when she goes back -- current work plus work from last semester. I guess that's the way we'll deal with it. We're working on cardiac rehab here at home but just getting back to her normal daily activity will also help her in her recovery. She is definitely feeling better mentally - no symptoms of anxiety or depression either. She does have a counseling session scheduled for the end of January (that's the soonest we could get her in) (Dr. D wanted her to at least do some couseling since we stopped her anxiety medication due to nausea) but I'm hopeful that by the end of January we might be able to cancel it if she continues to do so well.

She's really having a problem coming up with a Christmas list. Finally yesterday she said, "Mom, I think the reason I can't think of anything I want for Christmas is because I'm just so happy to be HOME." Wow. If the whole world was that simple and that grateful, what a place this would be. I am so grateful to God for carrying us through not only every single day of our lives, but especially the last 3 years. I really don't know where we'd be as a family if God wasn't the center of our household. I thank you all for your words of encouragement and love - they simply have helped our faith stay strong.

We went Christmas caroling tonight with Marissa and her class. It's been about 30 years since I've been caroling. And they visited the VA hospital earlier today and sang some songs for them. She had a great day!

Josie made the middle school basketball team! She's excited, but they're in the early stages of lots of running and lots of drills. She's not a big fan of the running (she keeps her inhaler close by) but I'm happy that she gets to experience the comraderie and team spirit with the other girls.

I pray that each and every one of you have a wonderful Christmas spent with your closest family and friends. I am not a great socialite, and I have really struggled with that part of my personality over the past several years - wanting to change myself and wishing I was the "life of the party". But I am learning to lighten up and to just appreciate those who cross my path, and that would be each one of you. I don't know how you were led to Bailey's story, and maybe we haven't even met face to face, but the support you have given us these past 3 years is unlike anything else I've ever experienced in my 41 years. Truly priceless. Thank you.

I will definitely keep you posted of Bailey's progress, but, as you've seen lately, I won't be posting daily. Remember, no news is good news. But please continue to check in periodically, as I wouldn't want you to miss any updates. Bailey is an incredible little lady, and I'm anxious to see where God leads her in this world. And my prayer is that God lead you in a way that you life to the absolute fullest.
"Sing like no one can hear you. Love like you've never been hurt. Dance like no one is watching." I don't know where the quote originally came from, but I love it. I'm not mentally strong enough to follow this quote physically, but I sure do carry it around in my heart.

Merry Christmas everyone!


Thursday, December 13, 2007

Enjoy the Pics!

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Hey, Dave, it's a little tight!

Bailey shortly after surgery.

Rissy's treehouse that she and daddy built for school.

Rissy as a hippie for Halloween.

Bailey with friends Brian and Paisley.

Our friends, Conrad and Terry, bringing Bailey "Enchanted".

Bailey's new hat that she knitted.

Bailey listens to her new and improved heart after surgery. No more murmer!

Flowers from our friend, Matt.

A shot of Bailey's belly BEFORE surgery. (She allowed me to post this picture, since she doesn't look like that anymore.)

Flowers from Patrick.

Bailey's "Patrick doll" (from Carol).

Bailey's gingerbread house.

A drawing by our friend Greg's (telemetry) son. Beautiful!

Up and Running!

Thanks to our friends Terry and Conrad, I am able to post again!

Things are going great! Bailey is feeling fantastic! Every day just gets better and better. I'm still dragging her out every day to roam the stores and do some leisure Christmas shopping. (That's different for me - I'm usually running out trying to get it all done in 1 or 2 evenings. I like this better!) She still hasn't touched her wheelchair. We might even be able to return it soon to Eden United Methodist Church, from which we borrowed it. Thank you, Eden! Bailey is no longer nauseous when she eats. Yeah! Her weight is staying down. Yeah! She said just this evening that, "Dr. T is the greatest and most wonderful man there is!" You know, no one knows if the surgery has "fixed" Bailey long-term, so we've had kind of a guarded celebration going on. But each day is one day farther out from surgery and one day longer that the surgery has helped. I can feel myself beginning to inch down that guard. It feels great! This truly is going to be the best Christmas I've ever had. We're home and we're feeling good!

It's easy to overwhelm myself with a list of things to do around the house. My mind thinks I'm going to be home from work a lot longer than what I really am, I think. But I have made great strides in Josie and Riss's room. It was in need of, let's say, some organization. I've got a few other things at the house I want to get done, and I have to start baking some time! Probably this weekend. We've already strung our cranberries for the tree.

Josie's trying out for the Middle School basketball team this week. She finds out tomorrow if she makes it. She's been doing nothing but studying for finals and staying after school for basketball this week. She's tired and ready for the weekend.

Bailey's making progress on her homework. Still a ways to go, but progress is good.

I'll try to post some pictures soon.

Good night!


Tuesday, December 11, 2007

Things Are Going Great!

Bailey continues to walk around to wherever I drag her. She still hasn't used her wheelchair at all. She can feel her strength improving. She can now climb our stairs at home without holding on to the banister. She comments all the time on how much better she feels than before surgery. It is so exciting to see her so happy and healthy. After we got home, she started having trouble eating - she would take a few bites and get nauseous. The last half of yesterday and all today have been much better! She's eating a "light" full meal. She's getting there!

We had one of her teachers come yesterday to help her with homework. We haven't talked to her doctors yet, but we're hopeful she can go back to school after the first of the year. I'm sure it depends on the progress of her cardiac rehab and school work, but that's our vision right now. Wow! Back to school, back to work . . . wouldn't that be something?

Rissy had a pajama party after school today - they got to watch the movie "Meet the Robinsons". She had a lot of fun doing that. And Josie is at the Middle School sock hop right now. We thought we'd bop over here to the library before we pick her up so I can use their computers for the update - ours is still out of commission.

Well, a big window just flashed on the screen that says the library is closing in 30 minutes, and Riss still wants to check out a book, so I'd better sign off.

Have a great day everybody!

Monday, December 10, 2007

Follow-Up Appointment

I thought I'd take advantage of the hospital computers while we are here for Bailey's follow-up appointment. It went great! Something, though, is causing her nausea, usually after she takes a few bites of food. We think it might be one of her medications (the one for anxiety), so since she's doing MUCH better just being home, we're going to lay off of it a few days to see if it helps. We're on our way home to make low-sodium turkey sausage for lunch. It's MUCH easier to comply with the low sodium at home than in the hospital. And it feels SO GOOD to be able to cook meals again. Yesterday was potato soup (low sodium, of course) with noodles, carots and kale. It was yummy!

Got a little start on our Christmas shopping yesterday. Bailey walked around Kohl's and JoAnn Fabric without her wheelchair. We didn't even take it in! So exciting!

We'd better get going - we have places to go and people to see! Well, I guess we've already seen our people. We have places to go!

Have a great day everybody!

Sunday, December 09, 2007

Alive and Well!

I have to apologize for no new posts in a few days. I came home to computer problems. I didn't think I could get on the internet, but I was just laying in bed unable to sleep when it dawned on me what I could do to get on. So here I am . . . nearly 1:00 in the morning, without my glasses, typing as quietly as I possibly can because Josie and Bailey are having a slumber party in the living room tonight.

So! We're home. Bailey is doing really, really well. Things were a little anxious Thursday, both at the hospital getting ready to leave, and here at home having just arrived. Bailey was having some anxiety issues. Leaving the safety of the hospital with 24-hour monitoring and nursing service caused even me some anxiety too. Tom and the girls picked us up in front of the hospital and after loading our two wagons-ful of things, I climbed in the van and Bailey was crying pretty hard. I, of course, was afraid she didn't feel well or something was wrong. She simply said, "I'm just so happy to be going home."

It was really strange seeing all the Christmas lights out there and to see the snow on the ground. We could see the snow through the windows in the hospital, but seeing it all over the place and in every direction took a while to soak in. I slept downstairs in the living room with Bailey on Thursday night so she wouldn't have to climb the stairs or sleep in a room by herself. That's something difficult to change - having slept 4 feet from each other for the past 6 weeks. But last night and tonight, her sisters are having slumber parties with her. I get to sleep in my own bed. I would enjoy it much more if I felt like I could breathe - I seem to have gotten the "crud" that everyone else has had. I woke up this morning with no voice. So, having not slept well during the night, I've been stealing naps during the day.

We went grocery shopping on Friday and Bailey took her wheelchair in, like she's done the past 3 months, but she didn't need it! And she felt good and strong! She says she feels so much better now, not just having lost 28 pounds of fluid, but she feels stronger "inside". She says the surgery made her feel a lot better. It feels so good now. In the hospital, all we focus on, of course, is her medical condition and recovery from surgery. Being home now, we can do other things like grocery shop and clean and do laundry - even though those things aren't a whole lot of fun, it's nice to be able to do them again. We got to see Josie's volleyball game this morning.

Now, I guess we'll have to put our tree up and start some Christmas shopping. I'm hoping to gain a little more energy every day too. Sitting in the hospital room for such a long time takes its physical toll on me too. I can certainly tell a difference in my lack of energy. My legs feel like jello too!

Well, don't worry if I don't get to post another entry for a few days. It just means our computer isn't fixed yet. One thing I can assure you -- if we do end up in the hospital (which we're all praying won't happen) there will be an entry because the hospital computers work! So, no news is good news for now. But I will do all I can to get it back up and running as quickly as possible so I can keep you all posted and add some pictures.

Thank you for being there for us! I'm going to try to go back to bed.
Good night.

Thursday, December 06, 2007

We're on our way home!

I'll check in tomorrow!

Wednesday, December 05, 2007


Do you know what Generals do with their armies? They put them in their sleevies!
[That was from Bailey - we were a little giddy this morning and nearly peed our pants on that one!]

Just hanging out, trying to build up more energy, more muscles, and less fatigue. It's working pretty good, however, they're thinking she might have some kind of bug because she spent a lot of time on the toilet today and was nauseous off and on. Dr. D says that might make a difference in when we go home, but it still might be tomorrow. We'll see.

Wow! The snow was beautiful! We woke up this morning to seeing just white rooftops, but we went downstairs to see the outdoors. We were pointing and oohing and ahing like we've never seen snow before. We heard it was pretty slippery out there . . . and might be even more slippery in the morning. Hope you are all driving safely out there!

Bailey took three naps yesterday - I was REALLY bored. Today, she only took one nap . . . and I decided to take one too. Ha! We continued with our Riley Rummy game. The score is now: Bailey 9,085 and me 8,720.

Well, not much more to say. We'll talk to you tomorrow.


Tuesday, December 04, 2007

Good Chest X-Ray

Bailey had a chest x-ray this morning to see if there were any pockets of fluid caused from removing the chest tubes, and so far, so good. They started a new medication today to slow her heart rate down a bit - it's been running slightly over 100 since surgery which I guess is OK but they want it more in the 80's. She had her first dose today and it's down in the 80's. Dr. D said he's trying to send us home by Thursday. Gosh. Home. It's been a while. It will be so nice to get home. I hear we're gonna have snow tonight. Bailey and I are rooting for lots and lots of snow, but I know you guys out there who have to travel in it aren't so excited. Just drive safely in the morning!

Bailey got to take a shower today for the first time in about 6 weeks. She's had too many lines and tubes until yesterday. It felt really good to her. I was teasing her, telling her "6 weeks with no shower? You could be on Survivor!" Ha!

Bailey was evaluated today for her anxiety/depression. Since we're so close to going home, they're thinking just a change in environment will do wonders. We're going to give her a week or two at home and re-evaluate. We're going to have to do some cardiac rehab when we get home. With the extra 28 pounds of fluid on her these past several months before surgery, she has gotten weaker and weaker -- we're going to have to work on building her up again. Not sure yet what all that involves - I'm sure no stressful exercise but something. I'm going to have to stay home with Bailey for a while to get the rehab going and help get her caught up with school work, and also to help her with her recovery. She can walk downstairs (well, not down the stairs but the elevator) and back up with usually no problem, but she does get dizzy sometimes. And since I haven't been home for the other half of my family much since the end of August, it would be so nice to be home with the girls for their Christmas break. I'm thinking maybe I can get back to work when they go back to school after the first of the year. We'll have to see.

Have a great night, everyone!


Monday, December 03, 2007

The White Stuff

I woke up this morning to Bailey's sweet little voice: "Mom! It's almost 9:00." Aghh. For some reason, I seem to be wide awake at 1:00 in the morning and am lately having a hard time getting to sleep. So 9:00 came pretty early. As I sat up on my little bench here, my legs still in my sleeping bag since it's very cold over here by the window, I hear a little tap on the door and Dr. T pops his head around the curtain. He says, "Go back to bed!" I said, "Great! I have permission!" But that didn't last long. He then said, "Let's get those chest tubes out." Aghh. That was it. Such mixed feelings . . . at least on my part. On Bailey's part, she was just purely against it. She couldn't see past getting them out. She had herself convinced it was going to hurt and hurt very badly. We've talked about these tubes off and on for the past 2 weeks, and nothing anyone could say was helping her feel better about getting them out. So! Here we go. She starts crying and is strictly against getting them out. Even though she asked Dr. T long ago if he would be the one to take them out (usually one of his underlings is who takes them out) and he agreed, she was still strictly against it. She wanted to be "out" when he pulled them and he told her that it was too risky to take her to surgery to do it, but they did give her versed and morphine. And that still didn't do it. She kept asking for "the white stuff". The white stuff is what they gave her 2 years ago after the Berlin Heart came out, but they also did a few other things at the same time. Dr. T kept walking in and out of our room waiting for the versed to take effect. I was doing my best to console and and to try to get her to get control of herself, and she said, "Well, I didn't think they were going to do it in the morning!" Not sure what that had to do with anything. Maybe the versed talking? Finally, Dr. T walked back in and said, "Bailey, we're getting the white stuff for you." She was so upset that it really didn't register, plus the versed was making her loopy. We waited about 5 minutes for an anesthesiologist to come in and divvy up the white stuff. I held out my arm hoping to get some, but it didn't work! It was kind of scary, really. Dr. T told him to be careful because he didn't want her to stop breathing. They hooked her up to the monitors so they could keep a close eye on her breathing and BP. She was still awake and seemingly aware - still very upset - and he asked the anesthesiologist if he had given her all he was comfortable with and he said yes. Dr. T looked at me apologetically and said something like, "We really can't give her any more . . .". I was sitting at her feet rubbing her legs, and I just gave him a "wave" to go ahead and "git 'er done". That was all he needed. He tore off the dressing, pulled out both tubes together, and even pulled off all the steri strips that were on her incision - all in about 30 seconds. All of this while Bailey cried and cried, "No, don't touch it!" in a really whacked-out voice. Then, our nurse Amanda was helping with the new dressing and taped Dr. T's gloved hand down to Bailey's gauze. He said, "Well, Bailey, it looks like we're bonded together for a while." Ha! We all started laughing, and Amanda freed his gloves. Then, in a really small and whiny voice, we all hear, "I need some more white stuff!" Bailey had no idea that it was all over, even though we had already told her so. It felt kind of wrong laughing while she was so out of it, but we couldn't help it. I think we were just all giddy that it was over. It was quite stressful for everyone involved. She managed to tell them all "thank you" before they left our room and after she finally realized it was all over - her eyes still rolling around a bit.

Then Amanda and I were still talking about it later, thinking Bailey could laugh along with us, but she didn't even remember anything that happened. So we re-visited the fun morning and told Bailey all about it. She was able to laugh at the "I need some more white stuff!"

She's been taking more walks today. It's a lot easier for her to get around now that she doesn't have two giant "juice boxes" on tubes to carry around. And I can see the old Bailey coming around. There have been moments of the "h" word bouncing around today ("home"). Of course no one has committed to a day. The best we can do is "by the weekend" and "if everything continues to go well". Only time will tell.

Have a good night, everyone!


Sunday, December 02, 2007

A Quiet Sunday

Josie and Riss got to spend most of the day with us today. We had fun playing Yahtzee and watching movies. Bailey talked to Dr. T about maybe needing help with anxiety and depression. I wasn't in the room at the time - took Josie and Riss downstairs to get lunch. I was so proud of her for bringing it up herself. She said he didn't act surprised at all and said he would get the word to the cardiology team. She had a better day today. I think just being aware of how she's feeling and how it has been affecting her and knowing there's help right around the corner is giving her hope that she can feel like her old self again soon. He also told her that her chest tube drainage was slowing down and she might be able to get the tubes pulled soon and then get home - at some point. We're hoping that might be this week sometime, but we'll just have to wait and see.

Her weight has been going down slowly but surely over the past several days. Her belly isn't getting any bigger, and we're just hoping and praying it stays that way. Bailey told me last night that she's worried about whether the surgery will "hold" and whether the fluid will come back. That's definitely a concern of mine, also, but we'll just have to see what God has in store.

Have a good week everyone!!


Saturday, December 01, 2007

A Slumber Party

Today was a day of rest. Chest tubes are still draining, although they might be slowing down a bit. Bailey doesn't seem quite like herself lately - wondering if she could benefit from a little anti-depressant medication. She's not her peppy, friendly little self these past few days. She has no interest in continuing our Riley Rummy game; she's having a very difficult time working on homework and even turns the Riley teachers away when they come to help. The difficult thing for me is knowing if and when or how much I should push. I'm thinking that she could be in such a fragile state that any pushing would just stress our relationship out and that wouldn't do either of us any good. She was upset tonight that she was "being mean" to people and apologized to me and to Jenny for not treating us very good. I don't want her to get down on herself. She's such a sweet little angel and it breaks my heart to see her struggling over this.

Josie and Rissy are here for a slumber party tonight. Josie's happy - she's got a new recliner to sleep in and doesn't have to sleep on the hard floor anymore. And Marissa has already fallen asleep in our bench AND is laying inside of my sleeping bag. It's gonna be a tight fit, but when it's time, I'm squeezing in too!

One of our dear friends in night-shift telemetry, Greg, had his son draw a picture of Bailey. Oh my gosh! It's beautiful. Greg had it framed in a beautiful silver and black frame and matte. It's just beautiful, you guys. I'll try to take a picture of it and post it, so you can see it too. Thank you, Greg, and please thank you son for us, too. He's incredibly talented. I can't wait to get home to find a special place for it!

Bailey received a beautiful bouquet of flowers today from the Dempseys. It was such a surprise and brought a smile to her face. She strapped her chest tube boxes (which Paisley and I came up with a new term "juice boxes" - ha!!) to her wheelchair and took the quickest walk yet! She was walking around the heart center looking for people to tell. It was cute. She was so excited.

It's getting late. I gotta go move Rissy over!

Good night.