Bailey's Update

Rest in Peace Colin Our Friend

2011-12-25T20:08:00.002-05:00

On a day of great joy and celebration for the Miracle of Christmas, we are given the sad news of the loss of a friend. For you who have followed this blog through the years, you know how much of an inspiration Colin was to Bailey and our whole family. And I thank our nurse Dave for introducing us to Colin that late night on the Heart Center shortly after finding out that Bailey had been listed for a heart transplant. Colin, a heart transplant recipient himself, took our whole family by the hand, together with his friend, Brandon, and led us through an adventure of a lifetime. As Josie said earlier today, "Colin and Brandon made being in the hospital fun." It takes a special person to be able to do that. Colin, I hope you know just how special you are to us. Your short stays at Riley were timed perfectly to lift Baileys spirits just when she needed it. Those nights when you weren't allowed to see each other for medical reasons so you would play Battleship over the phone. We attended the Christmas and summer transplant parties together til Bailey was fnally kicked out of the group for not having received a transplant. You would come visit at the hospital and we would talk for hours! All the while you were building hope and confidence in Bailey and our family that all would be "normal" after transplant. God had a different plan for Bailey and she was able to come off the transplant list without receiving a new heart, but that in no way lessened the impact that you had on our lives. We will forever cherish our memories together. Thank you for being our friend, brother to my girls, and hero to us all. Love and miss you always.

Angie

FDA Approves Berlin Heart

2011-12-16T19:48:00.003-05:00

What an amazing day for children everywhere! The FDA has approved the Berlin Heart for use here in the U.S. to help save the lives of children with severe heart problems who have no other option available to them. Used usually as a bridge to transplant to keep the children alive until a donor heart can be found and matched, Bailey's heart was able to rest and grow stronger while on the device and she was able to be removed from the transplant list and sent home with her own heart. This was 6 years ago. We are celebrating and praising God that the FDA has heard the doctors' and patients' pleas and have decoded to give this precious gift of life to kids. My hope would be that no child would ever need this device. But we don't have that kind of control over happenings here on this crazy earth. So in the likely event that there will continue to be kids out there who need the assistance of a Berlin Heart, this is a joyous day!! The device doesn't have to be ordered from Germany and applied to the FDA for use on an emergency and compassionate basis. It can be ready and waiting for the arrival of those precious kids who are facing the possibility of death at much too young an age. My God we are blessed. Thank you God for answering our prayers and thank you Berlin Heart and all the doctors and medical staff at the children hospitals all across the U.S. - including Dr. T and Riley Hospital - who made great sacrifices to take part in the study. You are our heroes!!!

Berlin Heart On the Way to FDA Approval

2011-07-22T07:07:00.004-04:00

Berlin Heart goes before the approval panel for FDA recommendation in D.C. and they hear Bailey's story!

What a day! Bailey and I left Indy airport at 6:20am. Arrived safely at BWI (Baltimore/Washington International) Airport almost 2 hours later. Wondering where our driver will be, my phone rings and its him telling us what door he was parked by. Then we see a "Hunsberger" and a "McGraw" sign. It's a strange feeling in today's world getting in a car with a complete stranger who barely speaks English.

We have lots of time because we don't talk until 1:00 so getting stuck in rush hour traffic is no big deal. We arrive at the hearing site (the Hilton) just outside of DC. Spot a Starbucks and grab a snack. We sign in at the Public Hearing/Speaker desk and get to sit in on the last morning session. The room is quite intimidating and the schedule is very regimented. We receive a set of conduct guidelines and aren't allowed to speak until spoken to, basically. Berlin Heart's presentation was earlier in the morning, so we missed it. The FDA presented their findigns and the numbers and medical jargon were quite "blinding" to us. We followed enough to tell that the panel wanted to see results that included long-term survival rate and progress. Well, the study has only been going on since 2007, so there weren't many long-term numbers to report. That's when I decided I needed to tweek my speech a little bit to give the panel an accurate picture of how well Bailey's doing 6 years after her experience with the Berlin Heart.

We broke for lunch. Bailey and I grabbed a sandwich at the hotel restaurant, and I tweeked my speech, as the Berlin Heart crew ran off (literally) to compile some more numbers and statistics for the panel.

Just before we went back in to present Bailey's story, we got to meet the Berlin Heart group from Germany! They were so grateful and kind to us and couldn't wait for us to put a human touch to all the numbers and statistics. I asked them how the morning went, and they said "It went ok. But wait til they hear about Bailey." They're great guys! I got to tell them about the run-in we had in Albuquerque last fall with the big red heart-shaped hot air balloon from Germany and that none of the crew or pilot spoke any English. They thought that was really incredible and couldn't believe none of them spoke English!

There were only 4 speakers during the public hearing - there was 1 other patient represented and 2 cardiovascular surgeons - one from Philadelphia and one from Michigan. Bailey and I started the session. She did awesome! My heart was pounding out of my chest! It was really strange - this is the first time I spoke where I wasn't scared to death - but I was incredibly excited. I startd to speak and got a little choked up a couple times but could keep going. I had to stop for reassurance from Bailey when I told them about our awesome hot air balloon pilot we crew for! A picture of Mark and Alora popped into my head and I just wanted to give them a hug! They've been a HUGE support to us along with the rest of our balloon family! The panel spokesman thanked us for our time and appreciated the emotion and the human touch. The next speaker was a dad and little brother of a girl on the Berlin Heart in Delaware. Her name is Josie! and she's been on it for 9 months now waiting on the perfect heart. It was so hard to hear her dad speak. Such a raw experience for them right now - not knowing how long they'll have to wait, praying for the donor and their family, and knowing another open heart surgery is just ahead for them. The 2 CV surgeons did an incredible job. Neither one was a part of the study, but they reported valuable findings on their patients including number of deaths, number of transplants performed, number of clotting issues, etc. One of them pointed out the death rate seems kind of high but when you consider these critically ill kids don't have any other alternative because they are going to die without this chance, the numbers begin to look quite good! Wow.

None of us were questioned by the panel (22 very serious and scary looking men and women who used a lot of BIG words), but we were all thanked for our input. We then left - we didn't really care to hear anymore numbers and criteria. We were very happy with our presentation, and did all we could do. The rest is up to the professionals.

We ran out into the 250,000 degree parking lot to catch Josie's dad and brother. We exchanged hugs and smiles and compliments for our jobs well done. We told him we would pray for Josie, so if any of you want to join us in that endeavor, we would all appreciate it! Such an awesome family. (I reserve the word awesome for extraordinary situations. I've used it a lot today!)

So we have 3 hours to spare before our car returns to take us back to the airport, so we go sit in the hotel lobby while the deliberations continue behind closed doors. We thought our day was pretty much over.

We are first greeted by a couple different people telling us we did a great job and how brave we were to present Bailey's store before a bunch of scary people. Ha! Then, a man from some American Blood & Something introduced himself and explained that his company is working on an American version of the Berlin Heart and hopes to be before this panel in 4 to 5 years. He said that Berlin Heart has been working with them to develop the device and their relationship is not a competitive one since these devices are not profitable (there's not enough demand for that) but there is definitely a proven need for the device, so they and Berlin Heart are doing it strictly for the kids! Very impressive. I got to thank him BIG too!!

Then! The most exciting introduction of this whole day - a man came up and told us he was with the FDA back in 2005 and he is the one who granted the compassionate use of the Berlin Heart for Bailey! He personally worked with Dr. T to make it happen! He definitely got the biggest hug of the day and I took his picture with Bailey. How awesome is that?! (There's that word again.)

And finally, one of the panel members himself came up to us and thanked us for putting a human touch on all the numbers. He was sure it was not an easy thing for us to do but he appreciated it and thought we did a fantastic job. What a compliment that was coming from one of the big-scary-people-who-uses-lots-of-words himself.

Then we climbed into another car with another stranger and said a prayer that he was taking us to BWI airport. [fingers crossed!] We sat back and relaxed with BIG smiles on our faces.

Now we're back on the plane and headed home. Just before we had to shut our phones off, we get a text from Dr. Cox saying "It was a unanimous vote! They said yes to every question!!!! Congratulations and thank you for all your help!!" Now picture us in the middle of the airport gate not being able to jump and shout for fear we'll be carted off by the TSA, but wanting to do exactly that. Heehee! We settled for tearing up and hugging one another.

Hallelujia and thank God! The Berlin Heart is well on its way to being approved by the FDA (which is expected to become final in the next few months) and can then be at the hospitals waiting for the kids who need it instead of the other way around and having to keep fingers and toes crossed that it arrives from Germany in time to save a life. It's going to live right here!

Thank you to all of you who have been a huge support to us!!
We love you all!!

Angie and Bailey

Wow! It's been a while!

2010-12-11T02:43:00.002-05:00

It's 2:43 am and for whatever reason I can't sleep. So, I check my email. I have a thank-you-for-participating message from the St. Niklaus 5k in downtown Indianapolis the Josie and I participated in last weekend. (my first 5k ever - so fun! We ran in the snow!). Anyway, it was a German event. Started thinking about Germany, then about our friends at Berlin Heart, then about their web site. Decided to check in on that again and found a great story about Bailey's experience with the Berlin Heart. Awesome life-saving experience, I might add. Look it up! Go to www.berlinheart.com and click on "For Patients" and then "Patient Stories" and then, my favorite, Bailey Hunsberger. They gave a link to the blog at the end of the story and I started thinking about how I hadn't been on it in SO long, and then . . . well, here I am.

Bailey's doing absolutely wonderful! She is 1 week away from finishing her first semester at Indiana University! She loves her biology class! She really wants to go to med school at this point. Is exciting to watch her mold her career. She's still on 14 different medications and sees Dr. Darragh (her cardiologist at Riley Hospital) on a regular basis but all continues to be stable. We like that word. Stable. So non-eventful and non-emergency. It allows for the development of routine and sometimes mundane, now that we're not the emergency, which is SO exciting, and then the gratitude and awesomeness of life itself as an everyday gift from God quickly pounces all over the routine and the mundane . . . and we're back. We don't see Dr. Turrentine (Bailey's surgeon) much anymore and that's a good thing health-wise, but we do miss him. He got us where we are today. Incredible man.

Been a year of changes for me. My boss retired early in the year and let's just say I'm still adjusting. I did work for one incredible woman, and now I work with 4 guys. (it took 4 guys to do the work of one woman. Heehee!) Then my dad was diagnosed with post-polio syndrome and then pancreatic cancer and passed away only 3 weeks after that diagnosis. His last days were so very difficult for mom and me and my 3 sisters but we all prayed for whatever was best for dad, and we do believe that is what happened. He was 79 years old, led a very active life - even having had polio as a kid - and had a family who loved him very much. Lots about my dad that I admire. But the best part about the year is I have a real hobby! Actually 2 new hobbies - i'll explain the second one later. But Bailey was given a hot air balloon ride through Riley a year ago this past fall and I became so engrossed in the world of hot air ballooning that I joined the crew for the best balloon pilot and crew chief ever! They're a husband and wife team that has taken on a mission to raise money for Riley. What better fit could there be?! We have SO much fun together- we've all become great friends. Bailey has even been out with us several times on flights. Mark organizes the hot air balloon portion of the Indy Air Show which, again, benefits Riley. Come out and see us this year! Weather permitting, there will be about 10 balloons in the sky just after sunrise and a glow event at dusk. I'm working on a balloon-themed quilt to raffle off too! Just found out they moved the air show to May next year. Don't know if I can get it done that quickly. We'll see.

My second and most recently acquired hobby is running! Haven't ran since middle school. That's about [ahem] years ago. But enjoying it very much. Josie usually joins me - when she's not studying. When we were with my dad in his last days at the hospital, my sister Cindy and I made a pact that we would make better use of our legs in honor of dad since he couldn't use his. It also helps us cope with his death - a tribute to him. And so that's why I was getting a thank- you-for-participating email from the St. Niklaus 5k event . . . And here we are. It's now 3:30 in the morning. Glad tomorrow . . . er, I mean . . . Today is Saturday.

Boy! This was mostly about me. Sorry. Josie is a sophomore in high school making straight A's, singing in the choir, and playing on the school and the church volleyball teams. So proud of her! And Marissa is in the 5th grade and playing point guard on the basketball team in two different leagues. So proud of her! Life is good, God is merciful and full of grace, and I wish you all a Very Merry Christmas and a Wonderfully Happy New Year! (A little-known fact, my mom's maiden name is Mary Christmas. It's true!)

Good night everyone!
Until next time,
Angie

Yep! No News is Good News

2009-03-01T08:14:00.004-05:00

It's been a while since a posting and that, of course, is good news. Bailey's had a few "symptoms" since the last update - ones that could quickly make you panick if you let it. A little swelling in her feet, legs and eventually hands, made us call Dr. Darragh. After a couple of weeks of watching her feet and legs (she even started wearing sweat pants every day to school in case her jeans were getting too constrictive from growing so much - she's gained 30 pounds these past 16 months - that's 30 pounds of GOOD weight), we were sitting at the dinner table eating dinner, and I saw Bailey's hands. I said, "Bailey, are your hands swollen?" She looked at them, stretched her fingers out, and simply said, "No." Josie, sitting across from Bailey just nonchalantly and matter-of-factly, as if she'd already noticed them, said, "Yes, they are." Bailey burst out in tears and looked straight at me as if to say "do something!" I grabbed my cell phone and tried to keep my emotions under control - needless to say, I was a little panicked too. Maybe it was time we succumbed to the overbearing and paralyzing thoughts that had been running through our heads for the past couple weeks - maybe the fluid was coming back. Ugh!! (Those words aren't even easy to type out! I have the strong urge to aggressively backspace over every single letter.) Anyway, about a minute later, Dr. D said right away that he would be surprised if anything big was going on because her last blood work (just 2 weeks earlier) was the best it's been in a long time. (We later found out that there's some heart failure number where normal is 100 - Bailey's number was 110! It had been in the thousands during her sickest days. That's incredibly exciting and a little nauseating at the same time.) So I right away smiled across the table to Bailey and she stopped crying and the look of hope returned. He brought us in the following week for an echo "just for reassurance". It was reassurance just to hear his voice on the phone say those words. We just love Dr. Darragh - in fact, Bailey and I spent the rest of the evening just sporadically saying those very words to each other. "I just love Dr. Darragh." I don't know what we would have done these past 16 years (almost 17 now!) without Dr. D and our faith. Not at all to put Dr. D and God on the same level, but God, of course, is our true and steadfast foundation who blessed us with Dr. D. I'm very, very grateful for both. (And Dr. T is, of course, in there too, but we haven't seen him much at all these past 16 months. We miss him as a buddy, but it's very nice not to see him as our surgeon.)

Marissa's a big basketball star - she's in 3rd grade and just finished their league play. They only won 1 game - their very last one of the regular season - and lost their first tournament game. But she had a blast and she's a GREAT ball handler. She scored a lot of points for her team. Very, very proud of her! (Remember those days when she was playing soccer? She scored her first goal and I, in my motherly insanity, jumped up on the sidelines and cheered . . . what a major mistake. She saw me cheering and fell in a heap in the middle of the soccer field and just cried her eyes out. She was so shy and backward back then. I still credit the solid 6 months with the Riley nurses and her Kindergarten teacher, Miss Martin, for bringing her out of that and helping her little personality blossom.) She tried out for the travel team, but unfortunately they're scrambling around to find enough players - they sent 1 player to the 4th grade team and 4 players to the 2nd grade team, leaving the 3rd graders without enough players. At least that's the rumor. We'll see.

Josie is in the volleyball club at school so we attend all-day tournaments where she plays 4 matches (of 3 games each) nearly every Saturday. We don't have to travel far - just Indianapolis area so far. She's really enjoying the club. She was on the school team this year but sat the bench most of the games. And, you know the story, the school practices are spent with the girls that already have the talent in place and the other girls are left behind and to sit the bench during games. But the Club has worked with each one of the girls and they've all improved tremendously. They are now winning most of their games and they have all developed into very talented servers and spikers. It's a lot of fun to watch them grow. And, our very close neighbor is on Josie's team, so we get to travel with them too - that's a lot of fun! And, Josie's getting ready for her People to People trip to Europe this summer. They have monthly meetings in preparation, learning about the culture and different places they'll visit. Last meeting they had a practice packing session - they had to bring their luggage completely packed as if they were leaving on their trip. The parents stood in the hallways of the school as "obstacles" and the kids had relay races with their luggage. It's been a lot of fun for the kids getting ready for this trip and getting to know one another. I'm so excited for Josie to have this opportunity. Well, at least I'm excited until we take her to the airport that morning in June . . . I'm sure I'll be praying to God and asking, "What in the world were we thinking and why did you let us do this?!" Ha!

Bailey's getting ready for Franklin Central's first annual Dance Marathon to raise money for Riley. She's been telling her story at a basketball pregame show and they've even played part of the documentary for the kids. Hopefully that will be a BIG success! And she found, successfully tried on, and purchased her first prom dress. That was a HUGE accomplishment in our lives. She's always been difficult to fit in dresses - I don't know if being opened up so many times has given her an odd shape in her chest and ribs, but she has rarely been happy with dresses in the past. So I was expecting the shopping-for-a-prom-dress event to be long, arduous, and basically a test in our faith in God, but it was a joy! She found her dream dress on the internet at a David's Bridal site, measured herself for the "perfect" fit (chest was a size 6, hips were a size 2, and waist was a size 10 - after lots of deliberation and taking the style of the dress into consideration, we decided to go with a size 6), located the exact dress at a store in Castleton, drove up there the next day, tried it on (she did, not me - ha!), and fell in love. She was so cute. She cried when we got out in the van, she was so happy. It was a memorable and very exciting moment for us. You know that feeling when something so seemingly simple becomes such an enormous joy? I love those moments.

Tom switched to day shift at the beginning of the year, and it seems like we now have a husband and father. He is so much happier now - we didn't realize these past 7 years or so that there seemed to be such a hole in the family dynamic. It seems complete now. He doesn't sleep all day anymore! It's quite a change and we're loving it!

Hope all is well with you all. I need to go - didn't realize I was sitting here so long!

Have a good weekend everyone - spring is on the way! I just KNOW it has to be.

Love you,
Angie

Jewelry Event

2008-12-14T16:54:00.004-05:00

Happy Holidays, everyone!

Bailey, her best friend Paisley, Josie, Marissa and I attended an evening at Robert Goodman Jewelers in Zionsville to view jewelry that is being sold to raise money for the Heart Center at Riley. The jewelry was designed by Nea Hildebolt, who current lives in Bali. She was in town for the party and it was so nice to meet her - she's so sweet, thoughtful and really wanted to work on this project for the Riley kids. It really is beautiful artwork and if you're still in the market for a gift for the holidays, I encourage you to take a quick trip to Zionsville to take a look (and you can see the lights of downtown Zionsville at Christmastime). I'm not sure how long they are going to be available. There are necklaces, earrings,bracelets, and rings (although the rings didn't make it to the show) ranging in price from $100 to $250. Bailey is wearing one of the necklaces in the pictures below - not a great view of it, but it gives you an idea. We had a great time, and enjoyed the hospitality of the Goodmans and the Riley Foundation.

Bailey is doing fantastic these days! She's getting an ultrasound next week to see if her gallstone has grown but, even if it has, they aren't going to do anything about it as long as she is not having any symptoms.

We haven't see our Riley team much at all this year -- that's an absolutely wonderful thing, but we do miss them and we think about them often! (Hi Billie!)

Hope your holidays are wonderful!
Merry Christmas, everybody!
Enjoy the picture!

Angie

Bailey and Paisley

Bailey and Dr. Turrentine

Bailey with Nea, the artist.

Josie and Marissa.

Season of Thanks

2008-11-16T22:41:00.002-05:00

The girls and I visited my Aunt Donna's church in Greenfield today. The sermon was about being thankful. I have always loved the month of November as it's the perfect time to reflect on the year and truly appreciate all that we have. So I've spent my day in that reflection, and would like to share a few things with you, in no particular order. I'm thankful for my family - and that truly does belong at the top of my list. I'm even thankful for waking up at 5:30 in the morning to Bailey and Josie arguing over who gets the most bathroom time or whose belt is whose, because that just means that they're healthy enough to fight. It does strangely warm my heart - I used to think that my girls just never fought because I was doing such a great job as a mom (Ha!). Only after Bailey fully recovered from her health struggles of the past 4 years did I begin to realize that she just didn't have the energy to fight and therefore no fun for Josie either. (I hope you're getting a little giggle out of this, because I certainly do. Of course it gets on my nerves on occasion - just like any mom would - but it still warms my heart.) Don't get me wrong - they don't fight all the time - I'm just trying to get the point across that life has calmed down enough for us lately that it's opened the door to normal sibling rivalry - and it's beautiful. I'm thankful for my best friends and for one particular tea parlor in Noblesville - The Ruby Pear. (Check it out!) I'm thankful for a year where only 2 nights were spent away from home and in the hospital. I'm thankful for our jobs. There are a lot of people out there losing theirs, and I'm just thankful for ours. I'm thankful for every single nurse and doctor at Riley. I'm thankful for Rissy's black eye and sore elbow - because injuries caused by falling down the stairs could have been much worse so I am, therefore, grateful for just a black eye and sore elbow.

I could go on and on and on. I wish you nothing but joy this Thanksgiving season. It's through the trying times that we see God's light. I'm thankful to God for the many lights that He has given our family. I'm very grateful to each and every one of you who has said a prayer for Bailey and our family over the years. God answers prayers and miracles do happen. Thank God!

Have a great Thanksgiving everybody! Good night.

Angie
P.S. Yesterday was the 1-year anniversary of Bailey's surgery. I don't believe there are even words to express gratitude for that.

What's Up?!

2008-09-27T09:49:00.002-04:00

Happy Fall everybody!

It's been a while since my last posting - that's a good thing. Since "Jiminy Cricket", Bailey spent one more night at Riley for observation about a week later when she was having symptoms of heart pounding and chest pain. They didn't find anything on the monitor this time. Dr. D has since made minor changes to medicine and she's been on a 24-hour heart monitor a couple times to get a good look at things. She's been symptom-free since her two nights of observation. She's getting into a good routine with school now and even drove herself and her best friend, Paisley, to the homecoming parade where they rode in a float with their SADD Club (Students Against Drunk Driving) and then a bonfire at school. Tonight they're getting all spiffied up and going to the formal homecoming dance at the high school. Bailey's wearing her dress that we bought her last year for homecoming that she ended up missing due to one of her many hospitalizations. We attended the American Heart Association's Heart Walk last weekend! That was SUCH an exciting and emotional time because last year we took turns pushing Bailey in a wheelchair - she was so sick and couldn't walk any distance at all. We even took the wheelchair in to the grocery store. But not this year! This year she was able to walk 2 miles on her own without a problem! (The walk was 3 miles, but we took a short cut - it was pretty hot out there!) We walked with Bailey's Team which consisted of Bailey's Aunts (my sisters) Cindy and Vickie, cousin Cody, sisters Josie and Marissa, and our favorite med student EVER, Matt. We reminisced about last September when we spent most of it at Riley and it happened to be the month that Matt was assigned to the Heart Center. He's a great guy and will make a great doctor! It was quite a celebration to see how far Bailey has come since last Fall. Miracles do happen, you guys.

We're looking forward to Thanksgiving this year - Bailey and I ate Thanksgiving dinner on the Heart Center last year just a week after her latest life-saving surgery. I'm probably starting to sound dramatic, but it is dramatic. To think back to 365 days ago when Bailey was very tired, uncomfortable, and scared . . . and to see her today driving around with Paisley attending normal high school functions . . . it is dramatic and it makes me cry happy tears.

I'm doing a little better with her driving. I'm not following her around town anymore. I made the mistake at first of making her call me when she got to her destination and when she was leaving to come home. Depending on the errand, if it was a short trip, like Kroger, that was a mistake! Because when the phone would ring 5 minutes after she left, a shot of fear stabbed me when I heard her voice only to hear "I'm here mom." I have since told her NOT to call me on those short trips unless, of course, she needed something. I have fewer little heart attacks that way.

Josie (now 14) just found out that she's been accepted to go on a 19-day trip to Europe (England, France and Italy) next summer with People to People Student Ambassadors. This is a program started by Pres. Eisenhower after the war. He thought if there was any hope at all for world peace, the way to get there is through kids meeting and spending time with kids from other countries. Josie was nominated by a teacher, attended an informative meeting at Butler University, and even went through an interview process with letters of recommendation, etc. She jut got a call this week that she's accepted. Now we have to start selling our possession to pay for it! Ha! It is expensive, but I'm so proud of her for this opportunity! She has been sitting quietly and patiently in the background these past several years as our family rides this roller coaster with Bailey, and now we get to focus on something really great for Josie. Such an exciting time for her. Last year's group got to meet the Queen of England! They get to interview a member of Parliament, scale the wall of a castle (after being trained by world-renowned rock-climbers), spend 3 days and 2 nights at a family's home in France who doesn't speek any English, and all sorts of really really exciting things. An opportunity of a lifetime. We're excited for her!

Rissy (turning 9 in 2 weeks) just made her first "real" basketball team. She's playing in the school township league. She finds out in about a week which team she's on and when she has her first practice. Last year she played at the Y on a co-ed team. It was pretty successful, but she's looking forward to an all-girl team.

It's so pretty outside today - such a perfect Fall day. We're going to Tuttles Orchard for apples and anything else fun that we might find. I got to spend some time with my hummingbirds lately - they went on their feeding frenzy before they migrated south, heading across the Gulf to Central America. It's crazy to think of them flying 500 miles across water. I wish them well!

We have a little friend Cody (my friend Lori's 13-yeard old nephew) who has recently started his chemo treatments for Hodgkins. Please add him and his family to your prayer list. They have a long road ahead of them but prayerfully a positive one. They do great things at Riley!

Have a fabulous Fall, everybody! Catch ya later!

Angie

Jiminy Cricket

2008-08-16T15:05:00.003-04:00

I'm being stupid. There is a medical term called bigeminy (pronounced by-jiminy, hence the Jiminy Cricket comment) where one premature beat is paired with a normal beat in a repetitive sequence. We had not heard of this term until Thursday evening.

Bailey had a few episodes at school on Thursday which made her feel light-headed, dizzy and short of breath. I was summoned away from work a little early and we were ultimately sent to the E.R. at Riley to see what was going on. Not having any answers yet, and having difficulty fighting off curiosities of whether this was the start of something "big", we were pretty nervous. They hooked Bailey up to an EKG machine, gave her a button, and said, "When you feel something happening, push this button and the EKG will record the eposide." We didn't have to wait too long before it happened . . . and it was the biggest eposide she had - dizzy, light-headed, short of breath and finally, when it was all over, completely wiped out. The biggested part of it only lasted about 5 minutes, but she was melted to the hospital bed and all sweaty like she had just ran a mile. We were told we were staying the night for observation. We snuggled into our corner room on the Heart Center and tried to stay awake to watch the Olympics, women's individual gymnastic finals, but couldn't stay awake that long. I was awakened at about 2:00 in the morning by a resident coming loudly into our room, "Bailey, I'm really sorry, but I have to wake you up. Your blood pressure is pretty low [50's/20's] and if we can raise it by waking you up and doing a little exercise, we won't worry. But if we can't get it higher, then we'll have to worry. So! Stand up and let's do some stretches and squats! I'll do them with you." As I lay there pretending to be asleep and wondering if I should worry, I hear Bailey giggling and then the doctor giggling and then our nurse Angie starts to giggle. It's like a party! Apparently, it worked, because about 60 seconds into the party, the resident says, "That's great Bailey. Thank you. You can go back to sleep now!" And she did!

Then a few other times throughout the night, I hear, "Bailey, Bailey, are you feeling ok?" I guess her B.P. and her heart beats played tricks all night long. Dr. Darragh popped in before he got started with his day to let us know that he wasn't too worried about the bigeminy going on. Though they're not certain what is causing it, he says it's possible it could be a combinatin of anxiety from the start of the new school year, a little dehydration, and maybe some meds need to be tweaked. He was sure to tell us that everything else about her looked great. That's a relief! We were sent home Friday afternoon, and Bailey has felt wonderful since. It really was nice to see some of our friends from the echo lab, the Heart Center, and even meeting some new friends in the E.R. - our nurse Jenny (another Jenny! I wonder if ALL nurses named Jenny are wonderful?!), our EKG guy Chad, and our I.V. guy (didn't catch his name, but Bailey says he's the best I.V. guy she's ever had). But next time Bailey wants to go back for a visit, she just needs to let me know. There are easier ways.

Hope all is well!

Come on out to the Mount Comfort Air Show next weekend! It's for a GREAT cause!!

Angie

We had an incredible time in Maui!

2008-06-25T16:55:00.002-04:00

We made it back in one piece! What an incredible trip. Thanks to the Make-A-Wish Foundation, everything went very smoothly. After a 15-hour flight (with minimal layovers in Atlanta and LA), we arrived in Maui at sunset. So we didn't get to see anything on the 1/2 hour drive to the hotel. We could make out a little bit of white surf in the dark, but, other than that, it could have been Greenwood, Indiana. Went right to bed after we got to the hotel and then woke up at 5:15a and took a walk outside. It looks nothing like Greenwood, Indiana. It's gorgeous. Just to stand on the beach and look at the other islands on the horizon and let it sink in that you're standing on a little bitty piece of land in the middle of the Pacific Ocean. Crazy! The weather was tremendous. It was hot (high 80's low 90's) but the constant strong breeze made it perfect. And very little humidity. It rained one day - the day of the luau - but it was just a mist. Nothing like the rain in the midwest where you have to run for cover. Our airport shuttle driver told us they've had no rain in 80-some days so the mountains on our side of the island were pretty brown - they greened up a bit after the rain. The rainbows! Bailey and I saw one that made a complete circle . . . tell you about that later.

I'm trying not to make this a book, but we'll see how I do.

Our first day was a free day. We ate breakfast at the hotel, hung out at the pool, and took naps.

Thursday we went on a half-day snorkeling trip with the Pacific Whale Foundation. They fed us breakfast and lunch on the boat and took us to 2 snorkel sites. The first one was pretty rough seas - big swells even made it difficult to slide off the back of the boat into the water. I had to actually concentrate on not getting panicky. And the current was so strong where we were that we tried to snorkel up-current, like they told us to do, but we ended up staying right next to the boat the whole time. Josie was my snorkel buddy. We held hands - that made it easier for me not to panick. Riss tried to get it, but when she saw the big waves coming over the back of the boat platform, she wasn't interested. She did get in at the 2nd location. They took us all the way around to the other side of Lanai - none of the crew had been back there. (There was a raft tied up at the mooring they normally use, so they had to keep going.) It was great back there! Much smoother water. And Riss got in with me and Jos. (Bailey swam with Scott and Nancy.) But she wouldn't put the mask on and look under the surface of the water! She tried so hard, but couldn't do it. Poor Tom didn't get to enjoy that part of the day - he was sea sick. He got in the water once thinking it might make him feel better to get off the boat, but it didn't. So he hung out with the other sickies on the boat.

Then Friday we went to the Maui Ocean Center - basically the aquatic section of a zoo. (Scott and Nancy played golf.) The Ocean Center had a diver get in the tank with a 2-way communication system attached. He introduced Bailey to everyone and waved hello. Told her to stick around because he had something for her. He was such a nice guy! He had picked up sharks' teeth from the bottom of the tank and gave them to Bailey. They had a great gift shop! We spent about an hour there. The girls got their names painted by than artist named Mok who makes letters out of tripical scenes. They really enjoyed talking to him and guessing the scene he was painting next. He was incredibly talented. That was a fun day!

Saturday was the helicopter ride and luau. Uncle David and Aunt Cindy bought Bailey (and me) a helicopter ride around the island. It was so fun!! We had a great pilot! He landed us on a black beach and gave us tropical refreshments. So much fun! When we were taking off from the beach, we saw all sorts of rainbows! One of them made a complete circle underneath us! It was too big to get a picture of. But what's even cooler about it was that the shadow of the helicopter was right in the middle of it. I think that means something good. But then, we flew down into this big gulch and that's when I thought my life was over. I told Bailey later than I was certain I was going to fall out (as he turned sharply in my direction)and land on a rainbow. The headlines would have read "It WAS a nice trip until mom falls out." I was consciously thinking to myself, "I'm strapped in here, not tightly but I am strapped in; my door is latched, at least I THINK my door is latched . . ." and it wasn't making me feel much better. But enough of myself. We told the pilot this was Bailey's wish trip and said he was "honored" to give her her first helicopter ride. Such a nice guy and fabulous ride!

Then the luau was great! I took as many pictures as I could of Bailey's favorite guy on stage. (We had front-row seats. In fact, we were so close that Josie says, "Where's the stage?" We bust up laughing.) My camera ran out of battery right at the end of the show, and then Bailey's favorite guy comes down from behind the stage when we're all getting ready to leave and he says, "What's your name? Are you with the Wish Foundation?" and, as she has stars in her eyes, he hands her a beautiful lei and gives her a great big hug. She loved it!

Saturday Scott, Nancy and Tom played golf at Ka'anapali so the girls and I took off early in the morning and went on the Road to Hana. We didn't do the whole thing (that would have taken all day) but we went about 15 miles and got a good taste of it. We walked some trails, saw a waterfall, and spent most of our time at the Garden of Eden. The girls fed the ducks and peacocks (Josie was brave, Bailey ran from them), saw all sorts of bamboo - even black bamboo that feels like plastic, rainbow eucalyptus trees (the trunks are all sorts of colors) - just beautiful. Had a picnic lunch on the side of the road next to the Pacific.

Sunday was a free day - we hung out at the pool.

Dinners were great - we ate at Bubba Gumps on the water in Lahaina, on the Ka'anapali Beach at Longboards. Needed a quick dinner Friday night so we wouldn't miss the premier on Disney Channel of "Camp Rock" with the Jonas Brothers. The girls have been planning that for 4 months! So we ordered pizza that night.

Monday was our last day. Our flight didn't take off until 8:45p, so we fiddled around in Central Maui and sat at the beach and watched and photographed windsurfers. Then we stopped in for appetizers and cocktails at Mama's Fish House. Once again, my camera ran out of battery with the windsurfers, so I didn't get any pics of Mama's Fish House, but it was the most amazing building and decor I've ever seen. I can't even begin really to describe it - just wood everywhere and beautiful fresh flowers - even on the spare toilet tissue in the restrooms. It was gorgeous and the food was incredible. Very, very expensive, but it was worth it.

Then to the airport to return our vehicles (the Make-A-Wish Foundation rented us a 7-passenger mini-van and Scott rented a Jeep Wrangler) and begin our trip back home. We landed in L.A. and Donald Sutherland boarded our plane to Atlanta. That was very cool. We tried to sleep on the plane, but none of us really got much sleep. Josie didn't get ANY sleep at all from Maui to L.A. and ended up sleeping during our 45-minute layover. We were making fun of her for crashing on the floor of the LAX.

We arrived in Indy yesterday (Tues.) at 4:30p. Our limo took us home. Josie was happy to see Mickie (her cockatiel) again. We ordered pizza for dinner and went to bed. I slept for 11 hours! The girls slept for about 14 hours! But we feel good today! I think we're already caught up on our sleep. (Unless there are typos here, then I must not be caught up yet.)

Been doing laundry while blogging, and now off to the grocery store to replenish our food supply.

Enjoy the pictures!

Angie

Maui Pics

2008-06-25T15:46:00.043-04:00

We got to see Brandon (L) and Colin (R) at the Indians' game the night before we left for Maui. Brandon is Hawaiian so he was giving us some tips.

Wow! Our ride to the airport.

Bailey's Make-A-Wish representative, Krista.

We made it! I think Rissy's saying "You want me to smile after that flight?"

They're even cute in their jammies at 5:15a! (Of course that's 11:15a Indiana time.)

The Hyatt grounds were gorgeous!

"You guys better get down! Look what's behind you, Josie!"

Just another beautiful early morning walk. The moon setting over Lanai.

On the boat to go snorkeling with the Pacific Whale Foundation.

Jos and Riss had a moment of the blahs but it passed after their nap.

Tom's didn't pass so quickly . . . at all . . . even after a nap.

Another early morning walk.

Diver Scott at the Maui Ocean Center - he welcomed Bailey and waved hello.

The mornings really were spiritual.

Jos and Riss.

The view from a helicopter.

Our pilot, Mike.

This is the gulch where I thought my life was lost.

Co-pilot Bailey.

Bailey's complimentary drink from the Royal Lahaina Luau.

Bailey's favorite dancer. He presented Bailey with a gorgeous lei courtesy of the Make-A-Wish Foundation after the show.

You should've seen his tattoos. You can kind of see them on his right leg. They were cool!

We didn't drive the entire Road to Hana, but we got a taste of it . . . and the mosquitos got a taste of us!

The "Garden of Eden" was beautiful!

The rainbow eucalyptus was like nothing I've ever seen before.

Gorgeous birds - the owner was kind of wacky though.

Bailey and Jos hang with the birds.

Now we know why the windsurfers like this beach!

Sweet little lady selling baked goods. The only ingredient I recognized was "brown sugar", so I bought that one.

School's Out

2008-06-08T20:44:00.003-04:00

Wow - this is a great year! Nearly 7 months out from surgery and no rhythm problems. Yeah!!! We are enjoying every single day. We are finding the good in everything. We aren't doing any sports right now - no soccer or softball or basketball - so we get a lot of family time together. Josie just got home from a 4-day trip with her cousin, and I missed her! Bailey and Riss and I were watching our new favorite show this week (So You Think You Can Dance) and it just really hit me how it must have felt for Josie and Riss to be without me and Bailey for 6 months and then again for 6 weeks last fall. That must have been hard! Rissy simply said, "It was!"

Bailey and Riss and I went to the library yesterday morning to try to find a little bit more challenging books for Riss to read -- we went to Borders Friday night for some books to take on our long airplane ride coming up and Riss already went through those books like they were candy! (Junie B. Jones books) I told her I wasn't buying any more books but we'd go to the library and try to find some with a little more substance that she will enjoy reading. Well, Bailey was trying to help her find something and, for some reason, it seemed like everything we picked up had something to do with dealing with death. Riss finally said, "I don't want to read anything about anybody dying or fainting." (I don't know where the fainting came from.) Bailey got a little irritated with her and I said, "Bailey, think about it. She has a sister who has been critically sick these past 3 years and I think that might just hit a little too close to home." It's really interesting to see some of the effects of our extended hospital stays and Bailey's critical illness coming out on occasion. I know it affected us as a family, but to see its effects so clearly shows me just how deeply it affected us as a family and each of us individually. This also makes me very excited for Bailey's Make-a-Wish trip coming up next week. The girls are so excited and I'm so very grateful that we all get to participate in this trip as a family. If any of us were left out, it just wouldn't feel right.

Speaking of our trip, we leave next Tuesday (the 17th) and return the following Tuesday. This is going to be a trip of a lifetime. Trust me, I'll take LOTS of pictures. There's a mountain 10,000 feet in elevation that we had to check with Dr. Darragh to see if it would be wise to venture to the top of. He said we'd just have to try it. If Bailey started feeling light-headed or had difficulty breathing, we'd just have to turn around and drive back down. And Josie and I found this hike through a bamboo forest to a waterfall that we'd like to do, but it's uphill and about 5 miles round-trip. I don't know if it will be too rigorous for Bailey to undertake but we're resolved to simply trying it and, if it's too much, we'll just rest and turn around. We're taking lots of water and lots of snacks and are prepared for an incredibly exciting week in the middle of the Pacific Ocean. We got a map out and showed Marissa just how far exactly Hawaii is out in the middle of the ocean - and how small it is - and her eyes got really big. It's so fun to see the expression on little faces when they see things for the first time. I have a feeling this trip will be full of those expressions - both on little faces and on the "big old adults", as Bailey likes to call us. I haven't warmed up to that phrase yet.

Bailey gets her driver's license this Friday. Nope. Still not warmed up to that idea either. She's improved quite a bit having driven for the last year and really is a very good driver, but I'm still not there. This is hard. I know she has to do it, and she'll be driving out there all by herself before long, but I'm not liking it. I want to deny her this opportunity, but I just can't do that to her. We did sit down yesterday and ordered her a medical ID tag with her medical information on it. That might make me feel a little better - we'll see. I doubt it.

On to better things, she finished up second semester with A's and B's, and only has 1more week of her biology class to wrap up her first semester, and she's got A's and B's there too. I am competely impressed with her doing 1st and 2nd semester simultaneously this year. And I'm very thankful to her school counselor and her teachers who met after school with her and came over to our house to help her get through her work. Last time we saw Dr. Darragh, he said, "You know, we put you in a very difficult position last fall with your school, and I'm proud of you that you've been able to work hard and get all caught up." Bailey just beamed! She has so much respect for him. And he fixed her belly button! She had a herniated belly-button after all that fluid she had last year and, of course, it could have been fixed with surgery but since no one wanted to do that, he told her to wrap an ace bandage around her belly to poke her belly button in and allow her muscles to shrink back in and eventually it would keep her belly button in. And it worked! She wore it daily for about 4 months and she's now ready for her 2-piece bathing suit. She's so excited! And keeps saying "I love Dr. Darragh!" Haha!!

Have I ever mentioned that I have the best girls in the world?!

Just wanted to give you an update before we leave. You'll have a full report upon our return - complete with pictures!

Have a great summer, everyone!

Angie

No News is Good News

2008-05-11T19:11:00.002-04:00

As I have always said, no news is good news. It's been quite a while since I've written - over a month. We have been enjoying every minute of every day. Bailey continues to feel really good . . . and the fluid still hasn't returned. She hasn't had any gallbladder pain in weeks - we're hoping the med to dissolve the stone is working! We continue to cook with lots of fresh foods to continue her low-sodium diet. Have you seen Frito-Lay's "Pinch-of-salt" chips in the chip aisle? They have potato chips, corn chips and tortilla chips. They are very good - actually, I think they taste the same. In fact, I overheard Bailey and Rissy talking this afternoon in the kitchen as they were getting a snack. They were getting into the Pinch-of-Salt corn chips and Rissy said, "These are low-sodium?!" as she was munching away.

I've had a very good mother's day. We spent the morning and part of the afternoon at the track for Riley Family Day. Yes, it was raining . . . a lot . . . and they ended up closing the track and the garages early, but it was still fun. John Andretti stopped in to say hello and sign autographs - the kids really enjoyed seeing him. He's such a nice guy. And Tom and the girls gave me a new digital camera for mother's day. My previous camera was in the bottom of a bag that I accidentally dropped on the floor and it popped and now rattles when it's turned on. Knowing it was on its last leg, I now have a new one that's even better than my old one and it's just in time for our trip.

I haven't written about our upcoming trip until now because I wasn't sure if we'd get to even go. The Make-a-Wish Foundation is granting Bailey a trip to Hawaii next month. We've had the plane and hotel reservations for nearly a year, but you know how sick Bailey was last year - we really put it completely out of our minds. But about 2 months ago, it dawned on us that we just might be able to make the trip! When we booked the trip, we were thinking we couldn't really walk the bamboo trails that we've read about because Bailey would likely be in a wheelchair, and we probably wouldn't be able to go to the top of the mountain to see the big crater on Maui because of the pressure change, etc. But now! We get to do all those things! And Bailey and Josie and I are even talking about a zip-line adventure. I don't think I'll be able to do it without crying my eyes out knowing that a year ago we wouldn't even have considered it. And we're so excited. We shopped for the girls' bathing suits and I'm so proud of Bailey - she picked out a 2-piece! She says people will just think she was in a shark attack when they see her Berlin scars. She can point off-shore and say, "Yep, right out there!" HaHa! She's got such a good attitude. And Dr. D fixed her belly button! Not surgically either. She had a herniated belly button from all the fluid and pressure on her belly last year, and, of course, surgery was an option to tuck it back in but no one wanted to do that. Dr. D told her to wear an ace bandage around it for a while and, believe it or not, it worked! She's been wearing an ace bandage every day without fail and even putting a cotton ball on her belly button to push it in even further. And now, it looks great! But she's continuing to wear the bandage until the day we leave for Hawaii just so it won't pop back out. Ha! We're really getting excited. We all get to go - me, Tom, Bailey, Josie, Riss, and Scott and Nancy. Tom's afraid of flying, Rissy's afraid of flying, Josie's afraid of sharks, and Bailey and I just simply can't wait. It will be such an exciting celebration for all of us. We all went through very difficult times these past 4 years especially. So, we're in the thick of getting ready for our trip. Did I say we were going to Hawaii?!

Hopefully I won't be writing much more until after our trip since no news is good news. We'll take lots of pictures with my new camera and keep a journal so I will be sure not to miss any details when I get back.

Love you all!
Angie

Happy 16th Birthday, Bailey!!!

2008-04-05T09:02:00.015-04:00

Wow! What a celebration. I'm only sorry that you couldn't have ALL been there with us. Some friends of ours whom we met at Riley just after Bailey's last surgery in November, Terry and Conrad, pulled some strings and for Bailey's 16th birthday and put together the best birthday party EVER. Donnie Walsh and Tony and Laura George donated their suites at the Pacers vs. Miami Heat game last Monday. Bailey got to invite anyone she wanted and chose to invite some of her friends and favorites at the hospital. It was a flashback to the Pacers game (which was ALSO vs. Miami Heat) back in 2005 while she was on the Berlin Heart. This was quite different though. The only Berlin Heart in attendance was the cake.

We had such an incredible night - being able to spend the evening with those who collectively made the whole difference in the world to Bailey and our family was quite a thrill. Bailey has made leaps and bounds over all sorts of hurdles these past 4 years, but with each hurdle there seemed to always be another (sometimes bigger) hurdle up ahead so we never did really get a good solid time to celebrate. That's what Monday night was. Not only celebrating Bailey turning 16 (wow!!!), but celebrating every little and every medium-sized and every large hurdle she's busted through in the past recent years. Everyone was so full of smiles and hearts bursting with celebration. It was a night that none of us expected and all of us were so completely thrilled to be there.

Thank you, Terry and Conrad!

Bailey's actual birthday was Thursday. We celebrated with dinner at Joe's Crab Shack. Bailey's favorite meal EVER is the snow crab legs. We did our best to try to get the sodium content of the meal, but they are in the midst of re-doing their website and their menus and didn't have the information. They did however, tell us how they prepared the meal - they're steamed. I'm sure since they come from salt water that there's some level of sodium, but we decided to try it out. She continues to do an incredible job on her low-sodium diet. Every single meal she's taken in in the past 5 months has been scrutinized for sodium. I'm very, very proud of her. And! no sign, so far (and it's been 2 days) of any weight increase that might be due to the sodium in the birthday dinner. Yay!!!

I took her shopping last night to use some of her gift cards. I couldn't believe the energy she had walking around the mall! She didn't start getting tired until after we'd been there 3 hours. What a difference! Absolutely, truly joyous!!

We're off to Brown County this morning for some more shopping and lunch at the Artist Colony. For some reason, she's been wanting to eat there. I don't know if they'll have nutritional information, but we'll do our best!

Enjoy the Pics!!

Happy Spring everybody!
Angie

Some favorite nurses - Nancee and Amanda.

The best sodium-explainer EVER - Dr. Bramlett, and Micah.

Singing Happy Birthday!

The Americal Idol tour is next.

Bailey's surgical nurses - she saw a lot of them last year!

Bailey teases Dr. T with a not-so-low-sodium hot dog.

Bailey's echo team - Alisha, Nancy, Jennifer and Sarah.

Isn't Vickie pretty? I don't know what happened to the other two.

Good, good friends, Brian and Conrad.

Bailey's favorite camera guy EVER - Steve.

Steve . . . with hair!

Bailey's friends from the Riley Foundation - Katherine and Kevin.

Bailey's favorite med students EVER - Peter and Matt.

Bailey's night nurses - Jenny, Dave, Tanya and Billie.

Bailey with Donnie Walsh.

The Cake! Isn't this fun?!

Avoiding Gallstone Surgery

2008-03-22T09:06:00.002-04:00

We met with a great G.I. doctor at Riley, Dr. Molleston. She was wonderful. She had already talked with Dr. D in-depth about Bailey's history and had already read her file (well, not all 15 years worth, but let's be reasonable) and knew basically what she was dealing with. From Bailey's description of her pain, it was pretty clear that the cause was the gallstone, but she went through all her medications and looked at everything possible to make sure they weren't missing anything else that could be causing the pain. The options for gallstones is basically to tolerate the pain while eating low-fat foods to minimize the pain, or to surgically remove the gallbladder - I guess they don't "pass" or can be lasered like kidney stones. Bailey's done so well these past 4 months since her last open-heart surgery - they don't want to mess with a good thing and just throw in a surgery if they don't have to. Besides, she's on a blood thinner and they would have to reverse that to be ready for surgery, which would increase the risk of blood clots - and that, of course, wouldn't be good at all. But, Dr. Molleston told us about a drug that came out about 3 years ago called Actigall. It's made from bear bile (thought that was interesting) and it's used to attempt to dissolve gallstones. It's not as successful as they had hoped, but it does work on some stones. So, it's definitely worth a shot if it can help us avoid surgery. They're trying it for 3 months and then Bailey will get an ultrasound to check things out again. She's experiencing relatively little pain and, hopefully, it won't get worse. It's possible that the stone could get wedged in a spot which could cause fever, jaundice, vomiting, etc., in which case they would have to remove it, but we're hoping it doesn't get that far. No one wants her to get sick. So we'll see how the next 3 months go.

Have a beautiful Easter weekend, everybody.

People are often
unreasonable and self-centered.
Forgive them anyway.

If you are kind,
people may accuse you of ulterior motives.
Be kind anyway.

If you are honest,
people may cheat you.
Be honest anyway.

If you find happiness,
people may be jealous.
Be happy anyway.

The good you do today
may be forgotten tomorrow.
Do good anyway.

Give the world the best you have,
and it may never be enough.
Give your best anyway.

For you see, in the end,
it is between you and God.
It never was between you and them anyway.

-Mother Teresa

Love you all,
Angie

Can you believe? - gallstone

2008-03-16T20:50:00.003-04:00

Bailey's been having a pain in her upper right side for the past 3 weeks. It only lasts about 15 to 30 minutes. It started out once every 2 or 3 days, but now is every day. Last Thursday, the school nurse called and said Bailey was in a lot of pain and it was a lot worse than she's had. So after talking with our cardiology team, they suggested we go to the E.R. at Riley. We got there at 12:45 in the afternoon and at 9:00pm - after a urine test, blood test, belly X-rays and CT Scan - they said she has a gallstone about 8mm in diameter (don't know if that's big or not - seems like it). She now has to add a low fat diet to her low sodium diet - which really shouldn't be too much different than what we're already doing because it seems that the foods higher in fat are also higher in sodium. We have to follow up with a G.I. doctor to see what our options are. Dr. Darragh isn't too hip (and neither are we!) on any surgery any time soon, so if we can at all avoid that, that would make us all happy. I haven't been able to write about this until today (Sunday evening) because the girls and I spent the weekend at a cabin out in the middle of nowhere in Brown County with 2 of my sisters, my aunt and one of my nieces. It was soooooo nice! We didn't get ANY of the rain that was supposed to be dumped on that area so the girls got to explore in the woods. I wanted to stay and live there forever - so peaceful. Mom couldn't make it because she stayed home to take care of dad - his scooter dumped him out onto the cold hard ground when he was coming down the ramp on his van - he hurt his knee pretty badly. Not broken, but bad enough that he's needing some extra help to get around the house.

Gotta go - I'm knee-deep in laundry!

Have a good week!
Angie

Bailey Sleds!

2008-03-10T21:22:00.002-04:00

We tried to remember how long it's been since Bailey has been able to sled with her sisters (or anybody, for that matter) in the snow. We think it's been about 5 years - if not more than that. Playing outside in the winter is just something that's been stricken off of Bailey's list of things she's able to do . . . until Saturday! Prior to her Berlin Heart surgery in 2005, she had asthma symptoms that caused her to avoid cold temperatures outdoors. And last winter she was too sick to play outside, and this winter she's been too weak. I wish you could have seen her. I took the girls to Southeastway Park and Bailey wanted to go too. I had my doubts that she'd, for one, be able to walk through the snow (that takes extra energy in itself), and, two, that she'd be able to walk up the hill to be able to sled down, and, three, that she'd be able to stay out in the cold for very long at all. I was wrong on ALL counts! I walked up the hill with "them" (I say "them" because I was really there to make sure Bailey would be ok) and watched as Bailey looked down the hill on the other side, which was an even steeper hill than the one we walked up. She said, with this big smile on her face, "I wanna do THAT one!" I was a little nervous. I wondered to myself how I would get her back up the hill and then down the other side of it and back to the van, if she was unable to make it back up, or ran out of energy at some point. I kept telling her to "take it easy, take your time". She flew down the hill and walked back up. Flew down again, and walked back up again. And flew down AGAIN, and walked back up. Finally, after 20 minutes of watching her and telling her to take her time, I said, "Bailey, I'm cold. Wanna go back to the van with me?" And, to my surprise, she said, "No. I'm having fun!" Well, I HAD to go back, because I wasn't dressed at all for sledding -- I had tennis shoes on, a pair of jeans, and a wind breaker with a sweatshirt. I had no intention at all of getting out of the van, because I guess deep down I didn't really think Bailey would have the nerve or the energy to go sledding. So, I walked back to the van all the while worried that I was leaving her there. I kept thinking that Josie would run and get me if anyone (namely, Bailey) needed help, but then was thinking that if I stayed out there I would be available immediately. But it was COLD!! So, I sat in the warmth of the van for about 30 more minutes wondering if I need to go back to the hill, when I see all my girls' coats come sledding down this side of the hill. I kept looking for Bailey's black and white coat and, finally, saw it - she was the last one down. She stands right up and starts walking toward me. She doesn't even pause to lean over and rest her hands on her knees or anything! They all walk toward me - like the Mod Squad - all three of them with big smiles on their faces and I was overwhelmed with the need to shed some tears. I bet not very many people come away from a sledding event in tears and not because of an injury! I was so excited! I can't express to you how amazing and wonderful it is to see Bailey playing in the snow with her sisters. For so many years, Tom would take Josie and Marissa sledding and I'd stay behind with Bailey - either at home or in the hospital. My heart was completely filled with joy. I know what it's like to be overflowing with joy.

And she didn't even quit on Sunday. Before all the snow melted, the girls, including Bailey, went out in our backyard and the neighbor's backyard to sled some more! And today she's complaining of sore muscles. I bet! Haha!! Such a pleasant problem to have!

Hope you all enjoyed your weekend!
Angie

Jonas Brothers Concert and Echo

2008-02-23T07:41:00.003-05:00

Bailey called on our good friend, Todd, to see if he could work his magic and get her tickets to a Jonas Brothers concert in Evansville. He came through for her! She was SO excited to take Paisley and Josie (Marissa opted to spend the night at a friend's house.) and, of course, they needed a driver . . . that was me. Knowing full well how far Evansville is from Indianapolis (3 1/2 hours to be exact), I was all for a road trip. I took my ear plugs . . . thank goodness! Lots and lots of screaming girls - my 3 included, I might add. Neither Bailey nor Paisley could speak after the concert. It was a good night. I have to say that the Jonas Brothers seem to be pretty neat kids - 16, 18 and 20 years old. I'm not too thrilled about a lot of teen idols out there, but the Jonases travel with their parents (who is/are/were minister(s)) and little brother. I haven't seen them do or say anything that makes me cringe as a mother and it was a relief to see another good, clean concert (they performed for the kids on our Children's Miracle Network trip in Disney World and Bailey actually spoke with them - I think she holds that memory dear to her heart).

I forgot about the time change, which meant we had plenty of time to get down there, but it also meant the concert started an hour later than expected WHICH means we get started toward home an hour later. Oh my. My expectation was that the girls would be so wound up from the concert that they'd be awake for half the trip . . . OH NO!! That didn't happen. 15 minutes into our return travels home . . . in the dark, on strange roads, and in the rain . . . they all 3 fall fast asleep. I pull over once about 1/3 of the way home to get gas and a Mountain Dew (caffeine!), and Bailey has the nerve to complain about the radio. I think my quote was: "Bailey, you're just gonna have to deal with it because I need something to listen to while I drink my caffeine and chew my gum!" It was a long trip. It stopped raining for about 10 minutes, but that was it. I contemplated pulling over to get a hotel, but I really like my own bed, so I kept going. Finally, just north of Edinburgh (only about 20 minutes from home), I had to call Tom. "If I blink one more time, my eyelids are gonna stay shut!" I ate so much junk food and drank so much caffeine that I had a really bad stomach ache when we finally did get home at 2:15am. The girls crawl out of the van, "Oh, I'm soooooo tired, Mmmmmmommmmmmm." Hm.

Bailey had an echo this week. It went great! Ever since her surgery in November, we've heard "stable" . . . which is very good! But THIS time, we heard the word "better" three different times in Dr. Darragh's report, AND we heard "best in a while". Yay!!! He made it very clear that she's not near normal, but any improvement is worth celebrating. And, Bailey returned to school full time as of Thursday. She's felt great!! I think it's good for her to finally feel completely a part of the school again. She's even going to go to "pit orchestra" rehearsal on Monday nights. Every little step toward "normal" is so, so, so exciting to us.

And Bailey's been talking with our friends at the Foundation over the past year in hopes of organizing a Dance Marathon at the high school to raise money for Riley. Unfortunately, she's been so sick this past year, that plans kept getting interrupted. We're meeting this week with our friend Katherine to get the ball rolling! We're so excited about that, too. It will feel really good to get to do something special for Riley. It's an incredible place, as you well know.

Enjoy the pics!
Have an incredibly great weekend! We will.

Angie

A little blurry, but "do-able".

Josie and I discover we're in the wrong seats, so we just move across the aisle and Bailey and Paisley still can't find us.

"The Bus!" The girls watch the doors for about 45 minutes hoping someone somewhere will emerge.

A pro photo, of course.

Ok, they're a little blurry, but they give you the idea. We had a blast!

Quick Update

2008-02-16T08:35:00.003-05:00

Thank you for your prayers for Eryn. However, she got the flu this week and they postponed her surgery to March 3rd.

The Star interviewed Bailey and Dr. T and Mr. Koers (her high school principal) earlier this week for an article that ran today (Saturday - you can also see it on-line - there are 2 versions, a longer one and a shorter one) about the Berlin Heart and Bailey's artwork that was put on a magnet and being sold at Wal-Mart for $1 to raise money for Riley. I know you have a spot or 2 on your fridge that would hold a new magnet very nicely . . . and I know where you can find one!!

The resolution at the State House that Bailey was involved in earlier this week was about organ donation. Rep. Dale Grubb asked Bailey and another teen girl who received a lung transplant to take "the floor" and encourage organ donation. They did a very good job.

Next week is only a 3-day week for school. Bailey's going to take advantage of the shortened week to attend school full-time to see if she is physically up to it. Keep your fingers crossed for us!

Have a great day! It's beautiful outside right now!

Angie

Life is Good

2008-02-10T08:49:00.000-05:00

It's so nice not to have to write daily updates on this blog - as you know, no news is good news. Although it does give me some kind of unexplained comfort to sit down and write to you all - it makes me feel surrounded by friends and family (and even strangers) who have nothing but love for Bailey and our family. Sometimes it starts to feel heavy and lonely out here - we don't have the daily physical support of the incredible doctors and staff at Riley and we slide further and further into our daily and weekly routine of everyday life . . . which is DEFINITELY a good thing considering the alternative. But we do miss everyone at the hospital . . . and, trust me, it feels REALLY good to be in a position to be able to miss them. We had weekly visits after going home in December from Bailey's last open-heart surgery and now her echos are every month. And, as for labs, which have been every 1 to 2 weeks, we purchased a machine for home (just a finger stick) to test her INR (thinness of blood) so that's allowed us to stretch out the lab visits.

We're still getting things worked out with our primary and secondary insurances to cover Bailey's two most expensive medications (viagra and bosentan). We're fairly confident it's just a matter of paperwork from Bailey's doctors to get them to cover them. In fact, just this morning I called in a refill for viagra, and the pharmacist advised it went through insurance as just a $50 co-pay. Shwew! Now we just need them to come through with the bosentan.

You would think I would be feeling more and more relaxed as Bailey comes through every day still feeling good and no sign of fluid coming back and as we slowly but surely get things figured out with insurance and the prescriptions . . . but I tell you, I'm feeling maybe even more anxious. Maybe and hopefully it's just a passing phenomenon. I'm thinking it's just a normal phase of maybe a slight case of post-traumatic stress . . . still hoping and praying that Bailey will continue to do well but being fully aware of the past year and how quickly things can become quite scary.

We had a great time at the WFMS radiothon on Friday. It's always great to see the gang from WFMS - Mimi, Vicki, Steve, Bob. They are such wonderful people to do what they do for Riley. This is a big fundraiser for the hospital and we are so, so grateful for the hospital. (That sounds funny to say . . . it's like saying "We are so, so grateful for the sun." Well, OF COURSE, we're grateful for the sun - it brings us warmth, light, green grass, spring flowers, and the list goes on and on and on.) Dr. T was supposed to be interviewed on the radio with Bailey but he couldn't make it because he was in an emergency surgery. It's pretty difficult to be disappointed, because we've been in that position of needing him on an emergency basis. He called Bailey after we left the radiothon to see where we were. He asked her how much she weighed (because, of course, we're all afraid the fluid might return) and she proudly said "83 pounds!" And his response? "Well, it looks like that sham operation worked." He's so funny. He jokingly refers to it as a "sham operation" and we know it, without a doubt, to be yet another life-saving procedure performed by the best in the world. We are so blessed as the state of Indiana to have Riley right here in our backyard. As long as there's Riley, there's hope.

Please say a prayer for my friend Marsha's family. Her daughter Eryn is a fellow "Riley kid" who's having a surgery on Wednesday. No matter how major or minor the procedure, as a Riley family, it causes all sorts of stress and anxiety. Please pray for peace and for everything to go well.

Have a great week everybody! We'll do the same!

Angie

P.S. Bailey is receiving a resolution (I think it is called) at the General Assembly tomorrow (Mon.) together with another Riley patient. I really don't know much about it. I just found out about it on Thursday. And if you're on the south side, The South Side insert of the Star is coming on Tuesday to interview Bailey to showcase her artwork that Walmart is going to start selling soon on a magnet to raise funds for Riley. So, shop at Walmart and fill your refrigerator door with Bailey's artwork! Ha!

Things Are Great!

2008-01-27T16:37:00.000-05:00

Sometimes I just sit and stare at my family, wondering why and how I have become so blessed by God. Ok, so there's the messy house; there are sisterly spats and downright drag-outs; there's the leaky dishwasher; and the mini-van with french fries underneath the seat right next to the few stray skittles that have been there for I-don't-know-how-long . . . But, my oh my, we're alive and we're together.

Josie had strep throat last week, and now Marissa has it. Bailey is doing her absolute BEST to try to not touch them and not get within breathing distance of them. It's only a matter of time before we find out if Bailey's going to get it, but we're going through lots of hand sanitizer. Oh, and Bailey's staying far, far away from the Cinnamon Toast Crunch cereal box. Marissa poured a bowl of it yesterday and it accidentally overflowed, sending little cinnamon toast squares flying over the edges of her bowl. (I was watching her out of the corner of my eye from the computer in the living room where Bailey was standing over my shoulder.) Then Marissa just grabbed a handful out of her bowl with her fever-ridden sweaty hand and shoved it back in the box. I just whispered to Bailey, "Ohhhhh. You need to stay far, far away from the Cinnamon Toast Crunch."

Poor Rissy is so, so sweet -- even more than normal -- when she's sick. She was laying on the couch with pink cheeks and red eyes, and I said, "Well, Sweetie, you can thank Josie for this." She gave an itty-bitty laugh and said, "It's ok, Mommy. I don't mind. Now I know how bad she felt." Josie missed 3 days of school and was all worried about catching up on homework. With Bailey working so hard to catch up on an entire semester? I told her I didn't think she had anything to worry about. And she's already all caught up. Rissy doesn't want to miss any school. She's already told me today that she doesn't want me to just let her sleep in the morning. She wants me to wake her up at 7:00 to make SURE she's still sick and has to miss school, because she "might be feeling better".

Then there's Bailey. Ha! (She's standing over my shoulder again . . . she likes to do that, I guess . . . and she said, "Real nice!" Ha!) We've had a good weekend hanging out together. Yesterday we watched Rissy play in her first basketball game (with a bunch of boys!). She made the very first basket! We were so proud of her. It took everything I had not to run out in the middle of the floor and put her on my shoulders and parade her around the gym. I managed to find the strength to hold back. Then Bailey and I went to the Kopper Kettle in Morristown with all my sisters and aunt and cousin and niece and soon-to-be niece-in-law to celebrate my Mom's birthday. That was a fun girly time! And last night, our favorite med student, Matt, invited us to a talent show put on by IU med students to raise money for local clinics for the homeless and poor. During intermission, we ran into one of Bailey's anesthesiologists who took care of her during many of her cardioversions. She was amazed at how well Bailey looked. She just looked at her with her jaw dropping open. She couldn't wait to get back to the hospital and tell everyone how she's doing. She then leaned over in my ear, teary-eyed, and whispered, "You don't know how many times we wondered if we were going to get her off the table. We just prayed that 'it' wouldn't be that day." Boy, that sent a creepy feeling floating around in my stomach.

Wow.

Thank God we're alive and together.

Then this morning, Bailey and I visited my Aunt Donna's church in Greenfield. She invited us to come meet a wonderful group of people who has been praying for Bailey these past several months. What wonderful people. They were so happy to see Bailey, and it was very nice to meet everyone. Thank you, Northside Christian Church, for making us feel so welcomed and for helping us get through such a challenging time in our lives.

I guess I need to get back to my laundry. Oh, yeah, there's that too. But we're alive and we're together.

Have a wonderful week!

Angie

Jump Rope for Heart

2008-01-19T12:20:00.000-05:00

Marissa is participating in the American Heart Association's "Jump Rope for Heart" next month to help raise money for research in heart attacks and strokes. If you would like to make a donation, please visit her personal web page:

http://www.kintera.org/faf/r.asp?t=4&i=248841&u=248841-202609135&e=1469730200

Riss says, "Thank you!"

Angie

Getting Back to "Normal"

2008-01-13T19:01:00.001-05:00

Bailey's first week back to school went very well. I went back to work too, and we were both so nervous. She was nervous to see everyone again - teachers and friends - and was afraid to work through 2 semesters at once. And I was nervous halfway expecting a call from the school nurse telling me Bailey didn't feel well, but I never got one! Her half days are working out pretty well, but it's hard on Tom. He has to get up in the middle of his "night" (he works nights and doesn't get home until 6:00 in the morning) to either drop Bailey off at school or pick her up. Maybe the 1/2 days won't have to last very long.

She's doing so well - both physically and with homework. I can see a big difference in her physical strength in just 1 week at school. We went to the Y today so Marissa could shoot her basketball and break in her new basketball shoes in preparation for her first basketball practice this Friday night. And Bailey and I shot around while Josie worked with Marissa. Bailey would get a little tired and have to step aside and rest a minute, but she told me it was a "good" tired and not a "sick" tired. She said she could definitely tell a difference between a healthy tired and a sick tired. I'm so happy it was a healthy tired. I found myself having this stupid little smile on my face while staring at Bailey who was getting ready to shoot the ball. I couldn't help but think back to just 2 months ago when she was so, so sick and was 30 pounds heavier. I was truly scared for our future. She has come so far in a very short amount of time. I thoroughly enjoyed hanging out with the girls - all of them! - at the gym. I am so so thankful to have each one of them here with me. I can't imagine life without them. They are such a joy - even in the midst of their occasional bickering back and forth - I thank God that he has blessed me with the best girls in the world.

I didn't feel too well today - nauseous and headache - and each of the girls came up to me at different times and hugged me to tell me they love me. How much better is life than that?

Josie is in the thick of her basketball - her first game is this week. She has found out she's on the "B" team. She was a little disappointed she's not on the "A" team, of course, but she seems to be enjoying it. And Marissa is so excited about her basketball starting. Yesterday was such a beautiful sunny day that we went to her school and played on the playground basketball courts there for a while. She's afraid she won't be as good as the other kids and won't be able to shoot as far. Her biggest fear is that she won't be able to reach the goal from the free-throw line. I told her she might very well not be able to reach it, but Josie couldn't reach it either when she started playing, and I remember when I started in the 5th grade that I couldn't reach it either. I don't know if that made her feel better, but it seems to suffice for the moment.

I'm so happy to be a mom to Bailey, Josie and Marissa.

Have a great week everyone!

Angie

Enjoy the Pics!

2008-01-03T22:29:00.000-05:00

Best Christmas ever!

Josie with her volleyball team.

Josie and Riss with Mickey.

Rissy with cousins Emily and Lyndie. Happy New Year!

Rissy jammin' with karaoke.

Josie helps Bailey with hair issues.

Bailey's "before" pictures taken by Dr. T.

Bailey's "after" picture taken by Dr. T

Follow-Up Appt. Today

2008-01-02T20:45:00.000-05:00

It was good to see the medical team again - Debbie, Dr. T and Dr. D. They were all very pleased with Bailey. (She did not get an echo - that's not until Jan. 22nd.) But all three of them asked "Are you eating?" when they first saw her. She is an itty-bitty-skinny thing. (And she IS eating! She eats lots more than she did before her surgery.) She's down to 82.5 pounds (her base weight a year ago before she got sick was 85). But her belly looks very, very good! In fact, Dr. T took an "after" shot of her side view today so he could compare it to the "before" shot that he took on his cell phone camera before her surgery. Amazing difference. She gave him grief about messing up her "Chinese scar". One of the chest tube scars from the Berlin days looked like the Chinese symbol for "laugh". It really did! And we really did like that scar. But he explained that he was just trying to use the same scar so she wouldn't have yet another one on her belly. He was just trying to be helpful! In all seriousness, he did say that he could smooth her scars out a little bit if she ever wanted him to. We kind of like making up stories, though. The best that we've come up with so far: gunshot wounds; shark attack; alien attack . . . It was quite fun visiting with him. He was obviously proud of his work ... as he should be! A truly incredible guy. Don't know where we'd be without him and Dr. D.

Dr. D even wanted to come take a look at Bailey. We didn't have a scheduled appointment with him, but it was good to see him too! No flutter in 7 weeks! Belly fluid nearly gone! (In fact, it just might be gone.) So exciting! I wish everybody could get a look at her. Just stand back and look. She's beautiful. Dr. D cut her lasix in half - he said her eyes looked a little sunken to him, and I think I agree. They directed her to eat more protein and do some muscle-building exercises. Now that they seem to have her dried out, we can work on getting some meat on her bones!

School starts Monday and I go back to work. It has been truly rewarding to not have to rush back to work after getting home from the hospital and to be at home with the girls this Christmas break. I've never ever had Christmas break off. It is fantastic! I'm thinking I might be ready to go back to work. Not sure about that, but hopeful. Ha! It will be nice to get back to a normal routine. I've been reading lots and lots of books and playing lots and lots of games with the girls and fixing low-sodium meals with Bailey.

Life is good!

Angie

Happy New Year!

2007-12-31T19:34:00.000-05:00

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,
Angie

Merry Christmas!

2007-12-25T12:27:00.001-05:00

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!

Angie

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.

Holding Steady

2007-12-18T16:24:00.000-05:00

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!

Angie

Enjoy the Pics!

2007-12-13T21:54:00.000-05:00

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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!

2007-12-13T21:30:00.000-05:00

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!

Angie

Things Are Going Great!

2007-12-11T19:21:00.001-05:00

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!
Angie

Follow-Up Appointment

2007-12-10T11:23:00.000-05:00

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!
Angie

Alive and Well!

2007-12-09T00:42:00.000-05:00

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.
Angie

We're on our way home!

2007-12-06T17:48:00.001-05:00

I'll check in tomorrow!
Angie

Armies

2007-12-05T20:31:00.000-05:00

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.

Angie

Good Chest X-Ray

2007-12-04T20:25:00.000-05:00

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!

Angie

The White Stuff

2007-12-03T20:01:00.000-05:00

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!

Angie

A Quiet Sunday

2007-12-02T23:10:00.001-05:00

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!!

Angie

A Slumber Party

2007-12-01T23:33:00.000-05:00

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.
Angie

"Enchanted"

2007-11-30T21:57:00.000-05:00

Wow! What fun. Have you guys seen Patrick Dempsey's new movie that just came out in the theaters last week called "Enchanted"? The last time Bailey saw Patrick (in May of 2006), he was in the middle of filming the movie, so we've been looking forward to seeing this movie since then! Unfortunately, we've been in the hospital and can't make it out to the theaters, so we told ourselves that we might have missed opening night, but we'll go see it as soon as we get to go home. Well, we don't have to worry about that anymore, because Disney brought the movie to us! Some of Patrick Dempsey's friends from a local production company here (Lingner Group Productions) and now our friends, Terry and Conrad, went through a ton of red tape and a lot of work to get this done because, of course, the movie isn't out on DVD yet. They had the movie flown out here specifically for Bailey's viewing, and then flew it back out to California. In fact, it's probably back there already. Terry and Conrad saw it with their families last week and came to show us the movie today. They brought us lunch (the BEST hamburgers I've ever tasted. They were REAL meat. It was SOOOOO good) and lots of candy. They had the movie poster framed and it's now dressing up our bathroom door. And we hung another on on the door to our room. It was so much fun! And the movie was great! We really liked it. Patrick did a great job. We are proud to be his friends. Thanks so much, Terry and Conrad, for such a great afternoon!

Well, it seems like a huge step down to talk about hospital stuff, but I do need to make my report. They split up Bailey's chest tubes today so they could see which one was doing what. One of them is draining quite a bit of yellow fluid and the other one is draining less but it is pinkish colored. Not sure what any of that means, but that's my report. Ha!

And, Carol, thank you for the Patrick Dempsey doll! We love it, and have been showing everyone that walks in! It's great!

Hope you all get a lot of Christmas shopping done this weekend!

Love you all,
Angie

Chest Tube Issues

2007-11-29T21:12:00.000-05:00

Got the CT scan done today. Haven't heard official results. There's some kind of pocket of either blood or fluid between her sternum and her heart. One of the chest tubes goes up to that spot, so we're not sure why it's not draining. Maybe a chest tube clogged. Her chest tubes are set up so that there are two tubes coming out of her belly and they tie into one tube that drains into the box. Tomorrow they're going to give each of the two tubes its own box to drain into so they can tell if one of them is draining the most. If one isn't draining, they can remove that one, and they might try to unclog the one that's going up underneath her sternum if they think they need to. She still has quite a bit of pain in her chest. She's supposed to be walking quite a bit, but she finds it pretty uncomfortable to stand up straight, so she's not really wanting to walk. She's been really sleepy the last couple days, and they came in tonight to say they're going to give her a blood transfusion because her hemoglobin has been decreasing quite a bit over the last few days. Hopefully that will take care of her sleepiness and fatigue. And hopefully it will help her jump into homework - she's feeling pretty overwhelmed right now. I tried to give her a pep talk about taking baby steps. It was pretty funny, she was getting really sleepy every time she'd try to work on homework - Dr. Cordes, the rounding cardiologist this week, came in during that time she was fighting sleep and he said, "Well, yeah! That would happen to me every time I tried to study philosophy!" Ha! She has been unusually unsociable these past few days -- I'm hoping the blood will help her feel quite a bit better.

Really not much more going on. They're not saying anything about going home yet - they're working on the chest tube issue.

I guess that's about it for today. They're continuing to put up more Christmas decorations. So pretty!

Good night.
Angie

It's Christmas Time!

2007-11-28T21:28:00.000-05:00

Ok. We're getting into the Christmas spirit. They decorated the atrium today and put up the big Christmas tree! It's so pretty. We had to go get an echo today, so Bailey and I toured the place to see the decorations. It's starting to feel like Christmas. And, with all the Christmas shows they're showing on ABC every night (tonight was "Shrek the Halls" and "How the Grinch Stole Christmas"), that's helping too.

Bailey and I are taking a little break from our evening TV viewing. We're down in the atrium right now -- I'm blogging, of course, and Bailey's knitting. We're sitting next to the big Christmas tree. I've had an enormous headache this afternoon and evening and feeling pretty nauseous - sinus stuff - and I'm trying to determine whether or not I should eat something and, if so, what it will be. The cafeteria is closed, so it will be McDonalds. Maybe a hefty dose of french fries? Maybe not.

Dr. D said Bailey's echo today was "reasonable". We all kind of laughed at how ambiguous that was, but at least he didn't take one look at it and say, "Oh, my gosh!!" Ha! He did find some fluid between her sternum and her heart - said that might be why her chest still hurts quite a bit. They're not too worried about it, but they are going to do a CT scan to take a closer look. If she was running a fever, they would be worried that it was an infection, but Dr. T said the best evidence is to take one look at her and see that she looks great and is feeling great. She's still draining from her chest tubes. This is, by far, the longest she's ever had those in, but no one seems to be worried about it. If they're not worried, we're not worried. Bailey's weight went down a little again this morning. Still moving in the right direction! Yeah!!

WFMS morning show (Jim, Deb and Kevin) visited today. They were gathering interviews for their radiothon in February. It was good to see them. Mimi sent a gift with Jim for Bailey - a gingerbread house kit. She's already got it done! That helped with the Christmas spirit too. I'll post a picture when we get home. It's so pretty! She figured out how to make icesicles (did I spell that right? it looks weird) with the icing. We watch at least 6 hours of the Food Channel every day, so Bailey really enjoyed working with food. In fact, she's thinking about a career in culinary arts. Thank you, Jim, Mimi and Corbin!

We're ready to go back upstairs. We'll detour McD's. Hopefully by then I'll figure out if I want something to eat.

Have a good evening everyone! And let me be the first to wish you a Merry Christmas and Happy Holidays!

Angie

Hanging Out at Riley

2007-11-27T22:44:00.000-05:00

Today was another good day. Chest tubes are still in and still draining. Bailey's still feeling good. Her weight went down a tiny bit today - we're headed in the right direction. She's scheduled for an echo tomorrow. Everyone keeps coming in commenting on how good she looks. Just keep hoping and praying that Bailey will continue her recovery to a long, happy and healthy life. We're a little slow getting back into school work -- but we're working on it.

I walked across the street to the Union at IUPUI today and was surprised (I don't know why though) to see Christmas decorations outside on the hospital. We'd better get home soon or Christmas is going to slip up on me completely unprepared. Having spent Halloween and Thanksgiving here, it's really really hard to believe that December is almost here.

Josie had a choir concert tonight at school. They are selling DVD's of the program, so I'll get to see it! She called me afterwards and was so excited - she said it was really good. Can't wait to see it. And can't wait to see Rissy's two front teeth missing!

Have a good night. Go Helio!

Angie

Continuing to Heal

2007-11-26T21:37:00.000-05:00

We woke up this morning to the respiratory therapist opening the door and saying "Good morning, Bailey . . . Good morning, Bailey! Did I wake you up?! Do you want me to come back? What time do you want me to come back?" Let's just say, Bailey didn't take that very well. Even though it was almost 10:00, she had a rough night -- woke up at 4:00 coughing and choking and then severe chest pain. She didn't get back to sleep until about 7:00. And her severe chest pain continued throughout the morning. She has a huge bruise on her chest now. Don't know if that's a result of pulling or injuring something this morning, or if just a deep bruise finally surfacing from her surgery. But her pain has been much better this afternoon and evening, thank goodness. Dr. Darragh came in today to check on her and when she was telling him she was having some chest pain, he said, "Well, I wonder why?" He and Dr. T just has a way of putting us at ease. And we've been a little concerned -- ok, a lot concerned -- about her weight going up, but they both think that more diuretic will make a difference. Dr. T also said they probably had her a little too dry last week and she's probably just establishing her normal. We're still holding our breath a little bit, but it's good to see that no one is panicky about anything.

No official mention of going home yet, but Dr. T said, "Wow, Bailey, you look like you could maybe go home some time." He's good at those profound statements. Ha! She still has chest tubes in -- they were draining a little more today. Don't know if they'll come out tomorrow or not. Bailey's really scared about getting them removed. She is trying her hardest to get Dr. T himself to take them out. She's even asking that he put her under anesthesia to do it, but I don't think she's gonna get that out of him. Don't think removal of chest tubes warrants such drastic measures. He did say they'd talk about it later and to not worry about it right now. Dr. D mentioned getting an echo tomorrow or Wednesday.

Rissy lost her other front tooth. She called me tonight to tell me she pulled it herself. She was sitting on the couch and took a kleenex and just played with it until it came out. She was so excited! Poor Josie is sick - stayed home from school today.

Bailey and I continued our Riley Rummy game. The lead keeps changing. We were tied at 3970 points. It's a close game!

Well, take care, and we'll catch you tomorrow.

Angie

P.S. Diane, you are in our thoughts and prayers. Have Arwin give you a big hug from us.

Continuing to Rest

2007-11-25T18:18:00.001-05:00

Another good day today. They turned off the milranone, so Bailey's not connected to her I.V. pole anymore. All we have to take with us on a walk is her chest tube thing. Her morning weigh-ins are continuing to go up. She's now up to 92 pounds. I've been wondering the last few days if her belly is as small as it was after surgery. And, tonight during the dressing change, I decided that it's starting to get big again. She's not on much diuretic and she's not peeing much -- I'm hopeful it's just a diuretic issue, but we'll see. Her left foot isn't as swollen today as it has been the last couple days, so that's good.

She walked downstairs for lunch and back up today, and did fine. Boy, I'm anxious for McDonalds to open back up -- the cafeteria isn't doing too much to pick up the slack. I was hopeful the grill would be open all weekend, but it hasn't been. They're keeping the deli open until 2am, but that's about it. I never thought I would be anxious to have McDonalds back, but I am. Ha!

We played a lot of cards today. Bailey and I started another "5000 Rummy" but we've decided to not limit ourselves to 5000 and just keep going as long as we can. We've now termed it "Riley Rummy". We're going to keep our scores and continue with them as long as we're here. We'll see how far we get. We taught Rissy how to play Rummy today. She's doing a great job!

Our plan is to start school up again tomorrow. Bailey's feeling better than she has in months, and she thinks she's ready to pick it back up. Wow, she's got a ways to go to catch up. If anybody can do it, she can.

Have a great week, everybody! I hear it's cold outside.

Angie

Yet Another Quiet Day

2007-11-24T22:40:00.000-05:00

Wow, the hospital's deserted. The good thing is, that makes for lots of rest and time to heal. Bailey continues to feel really good. Her left leg from her knee down is swollen, so they did an ultrasound today to look for any clots - they didn't find any. So that's great! We'll see what they say tomorrow. They went down on the milranone today - the last I.V. medication she's on. The chest tubes are barely draining - they'll probably be coming out soon. She walked all the way down to the cafeteria this morning and back up to her room. Doing great!

Rissy's spending the night with us tonight. She spent the night at her cousins' house last night and I think they stayed up a little late, because she was out by 9:00. She's so sweet - can't wait to cuddle with her.

That's about it for today. Slow and steady progress!

Good night.
Angie

A Quiet Day

2007-11-23T18:45:00.000-05:00

Today is a nice and quiet day. Dr. T came in a few times to check on Bailey. They're now treating her for a urinary tract infection. Just another something to add to her many experiences. The hospital looks like it did yesterday - deserted. McDonald's is closed until Monday afternoon for some major repairs of some kind and with the holiday -- it's gonna be a long weekend.

No word about when we might be going home. They've learned not to say, and we've learned not to ask. Just taking one day at a time.

We hear it's cold outside. I lay by the window at night and I do notice it getting a little cooler by the window. We heard it snowed a little bit yesterday too. I think I'm going to have a little difficulty getting into the holiday spirit this year. Having missed out on the traditional Thanksgiving, I'm not ready to jump right in to Christmas. Boy, we woke up this morning to all the hullaballoo on the news about the millions of shoppers out there today for Black Friday. I have to admit that I've never been one to shop the day after Thanksgiving. I'm not a big shopper, and that must be why. I know what Santa's bringing Bailey this year -- shirts that fit! Ha!

She's doing incredibly well. She still has her chest tubes - they're still draining. Dr. T says he fully expected for her to have her chest tubes in longer than normal since she had so much fluid on her. They turned the epinephrine off this morning. So, continuing to whittle away at all the tubes and lines. Yeah! Slow and steady - that's the way we like it.

Have a great evening! We're going to watch the lighting of the Christmas tree on TV. We'll look out the window to see if we can see a glow. Ha!

Talk to you later.

Angie

Happy Thanksgiving!

2007-11-22T22:06:00.000-05:00

Surgery was one week ago today. The leaps and bounds that Bailey has made is nearly unbelievable to me. I caught myself just now staring at her while she sits on the edge of the bed coloring. Her hair's up in a messy bun, the color of her skin is just gorgeous, her arms and legs are a bit on the skinny side, and her belly is . . . well, what belly?! Truly a different person. Incredible. She walked two laps around the heart center today and didn't even get out of breath. She hasn't been able to walk any distance at all without getting out of breath in 6 months. I am so grateful that Dr. D and Dr. T joined forces again to get Bailey where she is today. There were no promises - just clarification of the risks. Bailey has such a complex heart condition that there were/are no certainties. Relying on faith really is the only way. I wonder at which point I would have become unable to function if I didn't have my faith. I just thank God that we have Him to carry us through this.

Bailey has had an incredible day. We still live day to day, but with each day that passes I feel like I can breathe a little easier. It was sad not to be able to celebrate Thanksgiving with our extended family today, but we were very content to be where we are. People keep commenting on how we must be tired of this place and ready to bust out of here, but truly that is not the case. This place has provided us with peace, love, and hope - how could we be ready to bust out of here?

We watched the Macy's Thanksgiving Day Parade from beginning to end today. That was fun! And we were delivered two plates of homemade Thanksgiving dinner. How wonderful! And mom even made Bailey some low-sodium stuffing. It was wonderful!

It's been a very low-key and restful day today. Bailey took one nice nap, but has been awake and perky all day. So, so, so nice to have her back. Dr. T came in a couple times to check on her today and he asked me how I thought she was really doing, because since she never complains about anything, it's kind of hard to get a feel for how she's feeling. I told him that two nights ago we were watching TV and she, out of the blue, said, "I'm so happy, I just wanna cry." He was happy to hear that, but then went off on a tangent about what's wrong with women -- they cry when they're happy and they cry when they're sad, blah, blah, blah, blah, blah. Ha! He seems to be very happy with where Bailey is right now. He's just an incredible surgeon. I really wish there was a way for us to accurately express our gratitude to him, but I really don't believe it's even humanly possible to do that. There aren't words in the English language extreme enough to get the job done. One of these days, and probably sooner than later, I am going to fall on my knees and break down. Given about 90 seconds of letting my guard down, it will happen.

I hope you all are enjoying your time with your families on this Thanksgiving day. I hope that you can be grateful not only for the wonderful things in life, but also for the challenges because they are what build our faith and shape our character.

I love you all out there - family, friends and strangers - for all your prayers - past, present and future - and for hanging in there with us. Happy Thanksgiving!

Catch you tomorrow.

Angie

Another Good Day

2007-11-21T22:28:00.000-05:00

Bailey had episodes of low blood pressure today, but no one seems to be too concerned. They seem to be thinking it might be a dehydration issue so they've given her some fluid. She had a small fever last night and now today she was pretty achy and has thrush (a sore throat and white stuff on her tongue). Dr. D came in and said, "So we gave you the crud on top of everything, huh?" Probably just something she picked up here. This afternoon and evening have been really good. She's felt so good, in fact, that she took 2 walks! Yeah!! She hasn't walked further than 6 feet in the last 4 weeks. And she did great. She said she felt so light. I can imagine! We walked down to the vending machines, and she purchased about $7.00 worth of snacks.

Rissy is spending the night with us tonight. We're so excited to have her here with us. Josie went home with Tom. They're coming back in the morning for Rissy and they're going to Aunt Vickie's to celebrate Thanksgiving. Bailey and I are going to watch the Macy's parade and just hang out - we'll take a few walks around the heart center, eat some snacks, take some naps, and just be thankful to God for all of our many, many blessings.

Hope your Thanksgiving is the best ever! Ours already is.

Angie

Well, What Can I Say?

2007-11-20T20:39:00.001-05:00

I stand in awe of God's miracles once again. And I stand in awe of Bailey's strength and courage once again.

We are back on the Heart Center and feeling great! Bailey got rid of 2 more lines today -- her foley cath (and yes, Claire, she can wear underpants again! Ha! She would be totally embarrassed if she knew I just wrote that, so don't anyone out there tell her, OK?) and her central line. The cental line was an experience. It was basically a heavy-duty I.V. that they stuck in her neck during surgery. It was stitched in, but all the lines attached to it made it so heavy that it was pulling on her neck skin. It just looked completely uncomfortable, although she never complained about it. She just asked that whenever they were hooking anything up to it that they be careful and not pull on it. Well, duh. Anyway, Dr. T came in with his nurse practitioner and said, "I have to go over to Methodist, so let's get this line out." There were about 6 of us gathered around her bed holding her hand and performing various other "duties" as the nurse practitioner snipped the stitches and then took out the line. I wasn't expecting what came next. She held a big patch of gauze over the area, but it started turning red . . . and redder . . . and redder . . . I saw the look in the N.P.'s eyes and tried not to get excited because I was the one holding Bailey's hand to calm her down. But when I saw the blood pooling at the edge of the gauze getting ready to run down the front of her chest, I said, "It's gonna . . ." and that's all I got out before it ran down her chest. Bailey could feel the warm liquid and I grabbed her gown and started blotting as quickly as I could so she wouldn't see any of it. Dr. T leaned over to look at it and said, in the calmest voice ever, "Ok." Then he turned around to wash his hands and get some gloves on and came over with a clean patch of gauze and took over. He removed the already soaked gauze and tossed them in a plastic dish on the bed and Bailey perked up and said, "What's that?" I said, "Just don't look, Bailey." She said, "I wanna see." So she looked and I was completely and totally impressed at her ability to hold it together. I don't think she would have been nearly at ease if Dr. T wasn't around. He's just incredible. So, he got it to stop bleeding, put some little strips on it to hold it together, dressed it, and then our nurse Anne and I and Scott started cleaning everything up. We even had to wash her hair - it was soaked too. Anne was sneaky and threw a bunch of sheets on top of Bailey's bed behind her so she wouldn't see that. We ended up having to throw away her pillow from home because that's the one she was laying on and it got soaked too. I just thank God that I can handle the sight of blood. Bailey's comment later was, "Well, I wanna be a nurse so I have to get used to it." Her strength amazes me.

She hasn't had any problems with her BP all day. She even felt so good that she called her best friend, Paisley, today. She hasn't been wanting to talk on the phone to anyone in weeks. It's just been one joyous day. It's so good to be back on the heart center, although, I have to make it perfectly clear to everyone out there that our nurses in ICU were wonderful. Stacia, Waenita, Anne, Sheila, Erica . . . I'm sure I forgot someone else, but they all took very good care of us. If you have to be in ICU, Riley's the place to be.

Tom and the girls are here tonight. Bailey's having a great time visiting with her sisters. She hasn't felt like doing that in weeks, either, so it feels like old times. Everyone's commenting on how it's so nice to see the old Bailey again. That's so true.

We're not out of here yet, and Dr. D reminded us today that things "still aren't perfect", but today was a good day.

Good night!

Angie

Check this out!

2007-11-20T12:06:00.000-05:00

Nitric is off!

Foley cath is out!

Central line is out!

CVP and BP good!

Going to heart center!

Fabulous!

A Great Day

2007-11-19T21:00:00.000-05:00

CVP is down and BP is staying up there! Such a great day. Is this a roller coaster, or what?! Bailey's been awake all day (with the exception of 2 naps), eating well, playing cards, keeping the doctors happy with her numbers, and just feeling really really good. Her BP dipped once today into the 70's, but they gave her some fluid and it went right back up there. She's had some headaches too, but they didn't last for long. Coughing is still very rough. She has such a hard time coughing -- can you imagine crying, coughing and stabbing chest pain all at the same time? It breaks my heart to see her in such pain.

Dr. T said the function of her left ventrical is dramatically improved over the post-surgery echo. Yeah!! He said today that this is looking more and more like just post-pump recovery, but we still have a few hurdles to jump. As Dr. D says, "We're not out of the woods yet," but I'm celebrating. Who knows what tomorrow or next week or next month or next year might bring, but I'm celebrating. Bailey looks so good. Since the drain procedure didn't have a whole lot of success, I was kind of scared to see all the fluid taken off during this surgery. I was so afraid that it would either just come right back in 3 days again, or her body just wouldn't be able to function without it and have great difficulty in recovery. It's such a heavenly pleasure to see her sit on her bed with her legs pulled in and crossed in front of her. She hasn't been able to sit like that in many months. It does my heart good to see her happy and feeling good. We kept telling each other during those last days before surgery that the surgery is just a pathway to getting her to feel better, and it has been just that. I just pray that it lasts . . . for many, many decades.

Nitric is down to 4. Maybe back to the heart center tomorrow? We'll see.

Good night, everyone! Life is good.

Angie

An Early Update Today

2007-11-19T10:17:00.000-05:00

This early update is for all you supporters out there whose anxiety takes control of your day when you have to wait for the evening post. Ha!

Bailey woke up "bright eyed and bushy tailed" this morning. She, again, sent me to the cafeteria for cheesy potatoes. She weighed in at 81 pounds. Still slimming down, but hopefully that will stop soon - don't really want her withering away to nothing! She sat up and got out of bed all by herself today! Says her chest pain (except for when she coughs) is a 1 (on a scale of 1 to 10).

Dr. T stopped in this morning to admire his work. He calls it "Body by T". I told him I have a couple brothers-in-law who have asked for the same thing Bailey had done. Ha! He is weening her nitric down by 1 every hour. He says this will be the test -- to see if her CVP stays down and her blood pressure stays up. Now we know what to pray for today.

Have a great day everybody! Talk to you tonight.

Angie

Today Was a Good Day

2007-11-18T21:02:00.000-05:00

Bailey slept great last night. She woke up about every 2 hours asking what time it was, but then she'd fall right back to sleep. She sat on the side of the bed this morning to eat her breakfast - she sent me downstairs for cheesy potatoes and a banana. She also stood up and stepped on the scale and she's back down to 86 pounds!!!! The 2 kilos (4 pounds) she gained yesterday disappeared. She has little skinny feet again. When she got back into bed after breakfast, her BP bottomed out again and her heart rhythm started looking weird. So, in the matter of minutes, they had a whole team of people in here taking chest x-rays, an EKG and an echo, and discussing the results. It is always quite stressful when a whole team of people are gathered in the room. They were talking amongst themselves and I was trying my best to listen and capture everything they were saying, but it all basically went over my head. They made some adjustments to her medication, and attributed her rhythm issues to her pacemaker, I think (at least they said she wasn't in flutter) . . . and said her echo looked better than it did yesterday. By the time Dr. T came in early this afternoon, her numbers were looking a lot better. In fact, he was pleased with her numbers. He told Bailey he still can't guarantee she won't have to have a VAD (in case this isn't just post-pump recovery), but he was pleased with the way things looked today.

She slept quite a bit today - so much so that I was concerned that she just wasn't feeling well, but around 5:00 this afternoon she wanted to sit up and sent me to get dinner. And she was sitting on the side of her bed for about 2 hours. She smiled and laughed and enjoyed a visit from Aunt Cindy and Uncle David. Several times today, she has just wanted to stand up for really no reason other than to just stretch her legs. She is using me and her nurse less and less to move around and stand up. She still needs help to sit up and to lay back down, but improving every day. She got her pain ball removed today. That was a really cool invention -- it's about the size of a baseball and it's filled with lidocaine. It had 2 wires attached to it and ran underneath her skin on either side of the incision on her chest, and it continuously fed numbing medication to her incision. It worked great! But you could really tell when it ran out - she's had to ask for morphine quite often. She was afraid to have the ball removed because she thought the wires would hurt coming out, but Juanita had them removed before Bailey even knew it. And the dressing change went much, much easier and quicker today. With each wire or tube that's removed, her state of mind gets a little more at ease. She'll be dancing the halls when the foley cath and her chest tubes are out.

And they say her rhythm is still doing strange things. But it looks awfully smooth and steady to me. I don't know what the rhythm issues are all about or how serious they are, but it's not flutter.

So, although we again don't know what tomorrow might bring us, today was a good day. If the trend continues, tomorrow should be an even better day - hopeful that the "numbers" will stabilize even more.

Tom and the girls came to visit and I heard all about their shopping trip. It was a huge success. Josie got her black pants and black shoes, and Rissy even walked away with a new pair of shoes. He did good.

Well, we won't be home for Thanksgiving, but Bailey and I have already made plans to watch the entire Macy's Thanksgiving Day Parade on TV. It's been many, many years since I've seen it because I'm usually elbow-deep in baking and cooking, so that will give us something to look forward to. And my family is going to deliver us a Thanksgiving meal, so we'll be well taken care of. Josie and Riss get to spend the day and night with Aunt Vickie.

Thank you for your continued prayers. They are the best that you could give us right now. Have a happy Thanksgiving week and enjoy the short work week!

Love to you all,
Angie

Continued Prayers

2007-11-17T20:09:00.000-05:00

Bailey's blood pressure has been all over the place (from the low 50's to the 130's) in the last 24 hours. This morning she hit the low BP and we had doctors and nurse practitioners in here watching. Dr. T came in early this afternoon and put her on nitric. He's having a hard time understanding why yesterday morning her CVP was 10 and in about an hour's time it jumped to the 20's. His explanation is that either this is just post-pump recovery and the nitric will help settle her BP and CVP, or the anesthesia has worn off revealing where her heart really is. He said he would give her a few days on the nitric in the hopes that things will level out and her numbers will look better. One day at a time. Only God knows, and only in God's time.

She didn't sleep at all last night. And I feel completely guilty about that because I had the best sleep I've had in several days. It's a good thing Stacia (our wonderful night nurse) was here to take good care of her and keep her company. This morning she was given adavan so she could get some sleep, but Dr. T thinks that might have contributed to her low BP. So no more sleep medicine until they can figure out what the next few days are going to bring.

It's really hard to keep my eyes off the red and the turquoise numbers on the monitor. On the plus side, her heart rate has been steady at 85. I haven't heard any PVC's, and she typically had several in a minute. And she has been eating solid food today and hasn't been nauseous at all. She weighed in 4 pounds heavier this morning, but Dr. T says as long as she has elevated CVP the fluid will likely return. As I sit here, the monitor just alarmed with a low BP (low 60's). I just wish that all it took was for me to "will" the numbers to where they wanted them to be. Since that's not going to work, I just need to turn my chair around and stare at the wall instead of the monitor. I can't really watch TV because the sound only comes out of the handset attached to Bailey's bed. I could turn it up loud enough to hear it, but that would be blasting Bailey, so I watch TV with no sound. Actually, it's pretty entertaining - especially the Food Channel. Rachel Ray, being the most animated of the personalities, makes me laugh. I have no idea what she's saying and cannot even identify some of the ingredients she uses, but her facial expressions are something else.

Tom and the girls came to visit tonight, and Rissy has lost her first front tooth! And the other one is loose too and hanging crooked. She said the tooth fairy came, but she and daddy had to search for it because her pillow slid off and ended up under her bed. I'm so grateful for and proud of Tom that he can keep our household running and take such good care of Josie and Riss. It's a lot less worry for me to know that the other half of my family is safe and sound. He's taking Josie shopping for black pants and black shoes that she needs for a choir concert coming up pretty soon. He was asking what size she wore, and I said, "Josie can tell you that. Just be sure to go to the Juniors section." He seemed a little out of his element, but I'm sure he'll do fine. Josie had a volleyball game today. She said they lost, but it was a lot closer than the last time they played the red team.

Well, I'll get back to my reading. We'll see what tomorrow brings us.

Angie

Still a Great Day

2007-11-16T21:05:00.001-05:00

This afternoon was a little rougher than this morning. Bailey had to suffer through a dressing change . . . and suffer she did. I'm not sure what percentage of it was fear in anticipation and how much of it was actual pain, but it took 1 1/2 hours to get it done. She wouldn't let her nurse take the tape off very quickly, and there was a lot of tape all over her chest and abdomen. She has two drainage tubes hooked up to the inside of her chest. They are about the size of my little finger in diameter, so really quite large considering they're sticking out of her belly. She is SOOOO very fearful of anyone moving those at all, so it made cleaning under and around them quite an ordeal for our wonderful nurse, Juanita.

Bailey's CVP and blood pressure jumped up this afternoon (CVP up to low 30's; and BP was in the 110's and briefly hit 130) and the worst of it was during her dressing change. So not only did we have a 1 1/2 hour ordeal of pain and fear, but we also had Dr. T and 2 or 3 others popping in and out giving instructions to Juanita. It was really quite a tense time. Juanita ended up having to give Bailey some versed to get her through the dressing change.

They have nitric sitting outside the door in case they decide to use that tonight. They did an echo today to see if they could determine the jump in her numbers, and Dr. T said the pressure in the ride side of her heart was higher than yesterday and the function on the left side was lower than yesterday, but he expects it's due to the trauma of the surgery and we're hoping it straightens out in the next 2, 3 or 4 days. He said this morning was just too easy, and this is actually more of what he expected. I don't necessarily think those are calming words, but I guess it helps a bit.

Ah oh. A respiratory therapist just came in to go some lung exercises. Bailey hates these so I have to go hold her hand.

Talk to you all tomorrow,
Angie

A Great Night

2007-11-16T09:50:00.001-05:00

Bailey is doing incredible, you guys. Her night nurses were amazed at how well she was doing. In fact, they said they were ready to send her home. Ha!

She has a fat bottom lip - not sure if that's from a reaction to some plasma she was getting (which I doubt, since it's still there) or if it got pinched by anesthesia or cardiology some time during the surgery. Of course, Dr. T says it was anesthesia or cardiology - not the surgery team - that did that.

Bailey was so happy last night. We didn't sleep much. About every 1/2 hour, I'd hear, "Hey mom." It was music to my ears. One time she pointed to the ceiling and wanted to know if there were little black bugs crawling all around. Another time she wanted to know whose boots those were on the table. I said, "What boots, sweetie?" She pointed to the window. From the Berlin Heart ICU days, I learned NOT to disagree with her, so I just said, "I don't know, sweetie." I guess that was good enough for her, because she didn't bring them up again. She kept asking the nurses for something to drink. She got lots of ice chips and a couple cups of water, and finally they said she had to slow down because they didn't want her to get sick. She didn't really appreciate that. She asked her nurse if she could have a "little bit of juice". She said she would have to ask Ashley (who is the nurse practitioner). Bailey pointed to the hallway and said, "She's right there." Erica just laughed and said, "Well, alright. I'll go ask her." Ashley crumbled like a wet rag. She said, "You're not easy to say no to."

They needed to weigh her this morning and were trying to figure out how to weigh her in the bed, but this particular bed doesn't have a built-in scale. Bailey said, "That's ok. I'll just stand on the scales if you bring them in here." I don't think I breathed the entire 10 minutes it took to get her out of bed and standing on the scales. She was orchestrating the whole operation -- telling one nurse not to pull on her chest tubes; telling another nurse not to pull on her central line (that's in her neck); and telling the third nurse how to read the scale (it's one of those old ones that slides). Pretty much all I did was stand there in awe marveling at her mental and physical strength. The incredible news is that she weighed 89 pounds. She was 111 going in to surgery yesterday morning. That's just mind-boggling. Dr. T thinks there's a good chance that it will stay off, too. That's even more mind-boggling since it came right back after the drain procedure a couple weeks ago.

Dr. Bramlet was just in here checking her out. He told me that he was in here yesterday after her surgery when she was first waking up and starting to move around (before we saw her), and he said the first thing she did was reach up to her belly to feel around for a VAD. In the middle of the night, she told me that she was shocked. I said, "What are you shocked about?" "I don't have a VAD." Then she smiled really big and went back to sleep.

Just had to share. I'll catch you again tonight.

Have a great day!
Angie

What a Glorious Day

2007-11-15T21:23:00.000-05:00

Bailey is a warrior. Dr. T talked to me yesterday about not knowing how today will go; not knowing until he opens her up what he'll find; don't know if this will work but it's a good shot . . . I have received that identical message before every single surgery that she's had her entire life from either Dr. T or Dr. Brown. It feels like a hard kick in the belly, but it's not anything I didn't already know. Bailey has been on the leading edge for 15 1/2 years. She constantly treads new ground.

Bailey didn't sleep much last night. She woke up at 11:00pm and wanted to hurry up and eat something since she had to stop drinking and eating at midnight. Then she was awake most of the rest of the night. She was so scared this morning, but not panicky or out of control. She was so happy to see Jill, one of her very own personal surgery nurses, and Jill promised her that she would be right by her side the entire way. That gave her the greatest comfort. Sweet little Rissy was quite upset to see Bailey so scared this morning. It was hard for Josie to see Bailey so scared too. We gave each other a great big hug, and that helped get us through the rest of the day.

It was SO GOOD to see Dr. T's expression when he came up to talk to us after surgery today. He was pleased. I'm so happy when he's pleased because so much of me relies on him and Dr. D. Dr. T said that everything went very well, all her pressure numbers were good (not perfect, but good), and he is hopeful that this will hold her "for a while". I'm hopeful that "for a while" means decades. He also wanted to do a lung biopsy to see if her pulmonary hypertension had become a primary issue as opposed to a secondary issue, which it's been since birth. If it has somewhere along the line become a primary issue, that means that a transplant that she might need in the future would likely be a heart and a lung. He didn't get the biopsy done because he didn't want to put her through undue stress, but what he saw in the pressure numbers made him feel pretty confident that she would likely only need a heart . . . if it comes to that.

We were able to see Bailey in ICU at 6:00pm. We walked in her room, and she was already awake (falling in and out of sleep) and still had the tube down her throat (the ventilator). She started pulling on the tube and we said, "No, Bailey, Sweetie, you can't pull on that." Scott said, "T put that in there, Bailey." She looked up at him and formed the shape of an "L" with her index finger and thumb. Ha!! The entire room busted out laughing. I told Dr. T that this was going in the blog! He was quite amused. After checking her out and draining the Foley cath like he likes to do, he turned to walk out. Bailey pointed at him. I said, "Do you want T?" She shook her head yes, so I called out for him. He came back to Bailey's bed, and she mouthed as best she could, "Thank you." I don't know if he kept his composure (he quickly turned and left the room after patting her leg and telling her "you're welcome"), but I know I was seriously struggling and my heart was swelling up with pride. She loves him so much for his talent, for his orneriness, and for his compassion.

She wanted to know about her weight. She heard someone say "47", as in 47 kg, and Scott said, "No, Bails, that's not your weight anymore." I said, "Sweetie, T got about 15 pounds off of you today." She put her hand up to her forehead and started to cry. She hasn't had a pair of jeans on in months. I can't wait for her to wake up and check herself out! I do see her ribs!

Then, she pointed to somewhere in the direction of the foot of her bed and put her hand in a fist and pumped her thumb up and down. Nancy and I looked at each other and couldn't figure out what she was trying to say. About 1/2 later, it just hit me: "Bailey, were you asking about Survivor and Grey's Anatomy?" She shook her head yes! Ha!! We were saying yesterday that she would likely miss our 2 favorite shows and I would have to watch them by myself. She was happy to hear Survivor started in about 1/2 hour. (Although she's been sleeping through them so far.)

They took her off the ventilator at 8:30 tonight, and she's been sleeping like a baby ever since. Her numbers on the monitor are great: heart rate 85, O2 sats 97, art line pressure 88/47, CVP 10, and respiratory rate 15. And her blood gases are great. And God is great.

I'm so happy. All the family is gone for the night and it's just me and Bailey in our room in ICU. The nurse isn't even in here at the moment. And, I don't feel lonely tonight. It was wonderful to be with my family and friends today -- it felt like the Thanksgiving gathering that Bailey and I will likely miss next week. (But we've been promised that plates full of food will be delivered to us. Yum!) And I knew in my heart that all you guys were right there with us too. I can't even begin to properly convey the amount of encouragement and love that you have showered us with in these tough, tough times. I, personally, am forever grateful to each one of you. God is definitely carrying me through all this and you guys are crowded in on each side of us cheering me on. You guys are all wonderful!!

I pray that we have a night as incredible as our day has been, and a day tomorrow full of light, laughter, and hope.

Thank you for hanging in there with us,
Angie

My, Oh My

2007-11-15T16:41:00.000-05:00

Gotta make this quick, because we'll be called down to ICU any minute:

This is the best possible scenario that could have been. They repaired/replaced 2 leaky valves in Bailey's heart and did the Maze procedure which is intended to keep her heart in rhythm. The best part is that no VAD was used. The night is still early, and it's kind of scary to be so happy . . . but we're happy.

They also took of 7 litres of fluid from her belly. She now has ribs! We haven't seen her ribs in nearly a year. I can't wait for her to wake up so I can tell her she's skinny and she doesn't have a VAD.

Dr. T said she may or may not be woken up and taken off the ventilator tonight, but her pressures all look really good and he was happy. Dr. D was happy too. Everybody's happy. God is happy.

Love you all!
Angie

Surgery Tomorrow (Thurs.)

2007-11-14T20:10:00.000-05:00

Woke up this morning to find Bailey still in rhythm. Yeah! Then Dr. T came by to tell us that surgery is scheduled for tomorrow - instead of Fri. or Mon. - due to the slim crew because of the Thanksgiving holiday. Lots of his crew is leaving town but a few of them are rearranging their holiday schedule so they can be sure and be here for Bailey's surgery. That gives you an idea of the wonderful people who work here. I am deeply grateful for their sacrifices they make to be here with us.

Wow. Surgery tomorrow. That's in the morning. That's like we go to bed tonight and wake up in the morning to go to surgery. Wow. I know it's only one day sooner than we expected, but when he said "tomorrow" it was like jumping in to an ice-cold pool of water. And ever since that moment, it seems to be harder and harder to take a breath. My heart even fluttered around a little bit about an hour ago. It took my breath away for a second. I've just been walking around here all day thinking that with every minute that goes by, we're one minute closer to the morning.

Lots of people stopped in today to wish Bailey well tomorrow. There are certainly a lot of people around here who love Bailey. She even received a bouquet of balloons today from Berlin Heart. How cool is that? Dr. T said, "Gee, Bailey, it's too bad you don't have very many friends." Well-wishes from half-way around the world brought a smile to her face today. Thank you, Berlin Heart! We love each and every one of you and think of you often only to realize how blessed we are to have met you.

They're working hard to get Bailey's blood thinner reversed in time for surgery in the morning. She's receiving fresh frozen plasma again. She had a reaction to one of the units she received a few weeks ago, but so far so good. She can't be pre-treated with benedryl because it causes her heart to race, but they have it here in our room in case she begins to show signs of a reaction so they can get it to her quickly. Her INR is almost where it needs to be.

Bailey's sleeping soundly. She didn't sleep much at all last night and didn't take any naps today, so I'm hoping she'll sleep through the night. She asked her dad to bring her crab legs from Joe's Crab Shack for dinner tonight. She enjoyed that! Then she laid back in her bed with her fingers intertwined and resting across the top of her big belly and fell right to sleep.

I guess that's it for now. I don't really feel like "hanging up" right now. The family has gone for the evening and I'm sitting here all by myself. A little lonely really. I feel like if I just keep typing and typing and rambling on and on that I won't be by myself -- I'll be with you guys out there in blogger world. But I guess I really don't have anything else to say, so I'll go for now. I'm a big girl - I can handle a little loneliness.

Now, where's my phone? Who can I call? . . . . . . Ha!

Love you all! Thank you from the bottom of our hearts for all the good thoughts and prayers. I can actually see them flying around in this room.

Angie

What a Network of Support

2007-11-13T22:23:00.000-05:00

You guys are the best! Thank you so much for all your words of support, well wishes, and just plain love. You guys are amazing. You have no idea what it means to us to know that you are all in this with us. You guys have mown our grass, brought meals to the other half of my family, brought us meals here at the hospital, send Bailey part of your Halloween candy and one of your very own little stuffed animals, think about us every day, and pray for us every moment of every day. What more could we need? Thank you all so much. We appreciate each and every one of you . . . even those of you we don't know and may never meet. You all have a very special place in our hearts.

Bailey's cardioversion went well today. It only took one try, and they were also able to get her PIC line in while she was under anesthesia. That is a big deal to us - Bailey gets so stressed out for those since she had a really bad experience with one back in the Berlin Heart days resulting in temporary injury to her left arm. We so appreciate the special arrangements they made to get that coordinated with the cardioversion. Since after the last cardioversion (Friday) she was only in sinus rhythm for 45 minutes, I've been holding my breath all day and trying to keep from staring at the green number on the heart monitor. Our resident came in just a few minutes ago (she normally doesn't come in this late at night) and I had the urge to run and brace the door and not let her in because I just had a feeling the words coming out of her mouth were going to be, "Bailey, you're in flutter." But I thought better of it since I was sitting with Bailey on her bed at the time and any number of her IV lines could have gotten tangled around one of my appendages . . . and that would not have been good. But she didn't have any bad news to give us anyway - she was just checking in. She said herself that she was trying not to stare are the monitor all night. Ha! I'm not the only one holding my breath.

She's been pretty tired today and a pretty good cough (still not sure if from a cold or from heart failure) and lots of bloody noses. They're not giving her a blood thinner anymore for now in hopes that her blood will thicken in time for a surgery on Friday or Monday. Still not sure when it will be. I don't think Dr. T likes Friday because of a lighter weekend crew but don't know if they want to wait for Monday. We'll see. We're just hoping she stays in rhythm until then.

I came back from dropping Bailey off at her procedure this morning and Tom and I just glanced up to the noon news to see "Adams Elementary Evacuated" and then they moved to the next story. Well, that's Marissa's school! We were on the verge of getting all panicky -- you know, you guys say how strong I am but I think that would have probably been my limit if something bad would have happened at school -- and Tom made some calls and found out that it was just a paint fumes issue. The kids were taken to the high school for the day where they would be picked up and taken home at their normal time, or the parents were invited to pick them up if they wished. When they came to visit tonight, Riss said, "Mommy, we had an unscheduled field trip today!" Haha! She was cute - they had a lot of fun playing and watching movies at the high school. I just thank God it was nothing more than paint fumes.

Mom brought by a printout of an inspirational e-mail today and I found exactly what I needed in the small print at the end: "Instead of telling God how big your storm is, tell the storm how big your God is." Ahhh, that's exactly what I needed to hear today.

Good night.
Angie

The Plan

2007-11-12T21:35:00.000-05:00

Well, Dr. D came in this morning and drew out a plan for the week. He's cardioverting tomorrow and hoping Bailey can stay in sinus rhythm for a few days to get some fluid off and as good a shape as possible so she can have surgery at the end of the week. If she goes right back into flutter tomorrow, the surgery will likely happen before Friday, because she is only getting sicker when she's in flutter. She's been gaining 2 pounds a day these past few days while in flutter. Dr. D and Dr. T have been in and out throughout the day checking on her and asking for any questions she might have thought of. It's quite obvious no one here wants to see her go through all this again, but they've come to the conclusion that it's necessary to get her to feel better. So, we're facing the exact same scenario that we faced nearly 3 years ago: a repair surgery which may or may not result in a VAD which may or may not result in a transplant. The repair surgery will include repairing or replacing 3 of her 4 valves and a Maze procedure which will scar up the inside of her heart so that the electric current can only follow a certain path which will keep her from going into flutter. It may also involve removing from scar tissue from the inside of her left ventricle left there by the Berlin Heart cannulas. If they have problems getting her off the by-pass machine, Dr. T will put in a VAD (ventricular assist device) that will assist her heart in pumping her blood throughout her body. Her kidneys will work better and hopefully the fluid will disappear. Am I rambling? I still feel like I'm trying to let this all sink in.

Bailey is doing ok with all this. Last Friday she didn't want to talk about it, but she started asking questions over the weekend and continued with her questions today and it must be making her feel better because she's more alert and awake and more like Bailey than she has been in 5 days. She's scared, that's for sure. I'm scared, that's for sure. But with God and the doctors here at Riley on our side, we are prayerfully hopeful that Bailey will be feeling better soon.

Dr. D came up this afternoon and caught me out in the hallway. He just looked sad and dejected and said, "So, does Bailey just really not want to see me?" I felt like I needed to give him a great big hug. He's so sweet. I just love everybody here. We feel so safe here and know we are in the best of hands. But that doesn't mean this is going to be easy. It's going to be awful. I'm going to miss Bailey while she's asleep for days. Those days and nights in ICU are going to be long and lonely. But we're going to do what we need to do. I just want Bailey to feel better.

Looks like we'll be here for Thanksgiving and maybe even Christmas. That's ok. We're right where we need to be.

Love you all,
Angie

Another Day of Rest

2007-11-11T22:16:00.001-05:00

Bailey coughed a lot last night. They're trying to determine whether it is a cold or a symptom of heart failure. She slept a lot again today, but was awake more than she has been in 3 days. She even played a half of a game of Yahtzee. She ate a little bit today and kept it all down. In fact, she wasn't nauseous - for the 2nd day in a row. That's exciting. Dr. T wanted her to sit in a wheelchair and get out of her room for a little bit today, but she really had no interest in that. So, she's still not herself, but was at least awake for 4 hours or so this evening.

Rissy and Jos came for a slumber party last night and to spend the day with us today. It was so nice to have them here with me. Bailey was pretty much out of it, but I got to spend some time with them, and Rissy has decided to spend another night with us. They don't have school tomorrow, so that works our great for me! She and I both fit perfectly on this little bench.

Well, part of me is hoping for some decisions to be made tomorrow by Bailey's team, but the other part of me is afraid of those decisions. It's a really tough time right now. I just want Bailey to feel better, and those decisions are meant to do just that.

Hope you all had a great weekend and have a great week ahead.

I'll keep in touch.

Angie

A Day of Rest

2007-11-10T23:02:00.000-05:00

Today was an ok day for Bailey. She's still really really tired and slept most of the day -- and she's not on any drugs to knock her out. That's concerning to me, but the doctors say it's probably a combination of built-up sleep deprivation and maybe some depression. But the good news is that she hasn't been nauseous today, but she still isn't eating much. She's really not awake long enough to eat much. Her peeing has slowed down a bit and she has gained 2 pounds each of the past 2 mornings. Dr. T gave her the option of going back to ICU on nitric and seeing if that made her feel better -- since last time they put her on it she made an immediate improvement. She really doesn't want to go back to ICU, but she's considering it just to see if it will make her feel better. Dr. T also came in today to answer some questions she had about the VAD that he might need to use. Her biggest fear is that we could go home on it, but he assured her that, IF she has to have one, by the time they get it in and she recovers from surgery, she would be ready to go home. And, also, he wouldn't let her go home with it until she was comfortable with it. He made her feel much better. Saying that we're "ready" for the next step might be pushing it a bit, but I think Bailey's to the point where she's really tired of being sick. It's a scary thought, what our future might hold. We just keep praying.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight.
Proverbs 3:5-6

Good night.
Angie

Cardioversion #25

2007-11-09T22:05:00.000-05:00

Cardioversion went well this morning -- very quick and only took one try. However, she went into flutter 45 minutes later. That was a disappointment. They decided not to do anything over the weekend and just let Bailey rest and see if she can get to feeling better. She's still nauseous and very, very tired. I think the tiredness is from a drug, adavan, that is a relaxer. But it really drugs her up good. I was worried today that the exhaustion might not be from the adavan and maybe more due to ill-health and depression, and that was very worrisome. I tell ya, it's very difficult to handle this when she feels so bad - when she wants to wake up and cries because she can't - when she sits up and grabs her puke bucket and hovers over it with her eyes shut, swerving back and forth trying to keep from falling asleep - when she looks at me and says she's scared - when she can't stay awake long enough to entertain me.

Dr. T came in today and said he's talking with Dr. D about an open heart surgery to repair 3 of her 4 leaky valves. He covered all scenarios including another VAD (not the Berlin this time, since she's grown big enough for the American version) and possibly bridge to transplant. We have been aware of the possibilities for a few months now, but hearing it again and knowing that if they can't get her in sinus rhythm it could happen sooner rather than later weighs quite heavy on our hearts. Bailey didn't want to talk much with Dr. T today about what she might have to be going through here before too long, but she has now decided she wants to hear more about the VAD he might use and ask other questions. The VAD he's thinking of using is one that is implantable and she could go home with. But going home with it scares her - she wants to be right here at the hospital safe and sound in the midst of her medical team. He's coming to talk to her tomorrow and hopefully he can help calm her fears a little bit. She's been so sick lately that I think she's at the point where she'd like to do whatever can be done to make her feel better even if it involves another surgery and VAD.

This is pretty scary going into this again. Having been there once, I just hope and pray that this next time around is as successful as the first time. Please continue to pray for Bailey.

Thank you,
Angie

On the Heart Center

2007-11-08T22:16:00.001-05:00

Cardioversion #24 went well this morning - only took 2 tries - and the scope found evidence in her asophagus of stress and anxiety, so they went up on her nexium. Hopefully that will help her nausea. Bailey's been out of it all day. They gave her adavan early this morning as a relaxer so she could get some sleep, since nausea has been making that difficult lately, and that drug just knocks her out for the day. In fact, she didn't even know she got cardioverted. She woke up and said, "Did I get cardioverted?" She was pretty nauseous still when she'd wake up for a few minutes at a time today. We came up to the heart center about 1:30 and Dr. D came in at 5:00 with the news that she was in flutter again. Agh!! She's waking up a bit more tonight and even ate 2/3 of a banana and 1/4 of a roast beef sandwich. And they stayed down. She watched Survivor and Grey's Anatomy with me tonight - well, she tried to watch it with me. Her eyes kept rolling back in her head and she kept saying, "I'm sorry, Mom. I'm trying to stay awake." Ha! She's so sweet. They increased her nausea medication and doubled her nexium, so I'm hopeful for a very good day tomorrow, even though cardioversion #25 is in the works.

Got to see the girls tonight. Rissy was quite emotional. I saw on the news that there's a child abductor haunting our surrounding neighborhoods at home and Josie and Riss were telling me all about it, and we talked about how to stay safe at home. Between that and our family being split apart right now, Riss just couldn't stop crying tonight. She wanted to spend the night with us tonight. We made plans for her to spend Saturday night with us. She wants us home so badly. Josie's doing pretty good. She's doing great in school and made a choir ensemble, so she's starting to work on that. She's enjoying as much time as she can with her friends right now. When we're all home, I make sure we all spend a lot of time at home as a family, but since we're split apart right now, I think it helps her to spend time with her friends. I hope that's the right decision anyway. It's tough to know at times. I just pray that we all come through this and continue to be a tight-knit family.

Hoping for a good day tomorrow for us and for you,

Angie

Off the Nitric . . .

2007-11-07T20:57:00.000-05:00

. . . but in flutter. They took Bailey off the nitric today around 12:30. She's done fine so far, but has been quite nauseous all day. When they do the cardioversion tomorrow, they are going to scope to see if they can find an ulcer or anything that might be contributing to or causing her nausea. She's apparently been going in and out of flutter for 2 days now, but is pretty much in flutter now.

We're still in ICU. Dr. D has put a request in for a bed on the heart center but, unfortunately, they're full right now. We're hoping they send someone home tomorrow so we can squeeze in. Prayerfully, Bailey will continue to do well off the nitric. And, good news, she's lost 4 pounds in 2 days. They don't weigh down here every day like they do on the heart center, so we weren't sure where her weight was. But they weighed her this afternoon and found good news! Yeah!! She's so excited about that. We're hoping the thyroid medication they started her on about 5 days ago is helping also. Maybe we're at a turn for the better. We just keep praying and seeing what the days bring us. Bailey's hoping to be home by Thanksgiving. That would certainly be nice, but we'll do what we need to do.

Hope all is well with everyone out there. We're enjoying the country music awards (CMAs) tonight. Hoping to catch a glimpse of our good friend Mimi!

Good night.
Angie

. . . and Still Hanging Out in ICU

2007-11-06T23:01:00.000-05:00

We're down to 1 on the nitric - maybe off tomorrow and then up to the heart center? We'll see. Dr. D did an echo today. Don't know the results of that yet - I'm sure we'll hear something tomorrow. We've had a full day of Yahtzee and a new game called Shake. It consists of a bunch of dice to roll (even more than Yahtzee) - we had to stop playing that game because every time Bailey would roll, it would show up on the monitor as V-tach. Oops! Our nurse kept coming in the room, "Are you rolling again?" Hee-hee! We thought we'd give her a break and move on to Mancala.

Nausea hit pretty hard this evening. I hate it when she feels so sick. I just want to take it away from her. She's feeling better at the moment. Hopefully she can sleep well tonight. We had a little baby move in next door to us last night, and these rooms are not nearly as sound proof as the rooms in the heart center. We both woke up to lots of crying last night. That's a little hard to take -- not only do we lose some sleep but it's so sad to hear a baby crying out, I'm sure, in some kind of pain, discomfort or fear. You just want to run to it and try to comfort it. And we heard that things have been pretty busy at the other end of the hallway (that we can't see or hear, thankfully). That always gives you a stomach ache, too, to see lots of medical people scurrying in and out of a room. Lots of kids to pray for around here. I'm just glad we're not one of the rooms needing immediate attention. Lots of things to be grateful for here too.

And I woke up at 6am this morning to Bailey's heart monitor sounding strange. Our nurse, Stacia (she's wonderful, by the way), was popping in and out silencing the monitor and taking printouts of the rhythm. Bailey's pacemaker is set at a low rate of 85, and the rate on the monitor was dropping into the 70's. So I was really confused as to what exactly was going on -- you know what it's like when you're not fully awake, things are a little confused and distorted. I wanted to get up and ask Stacia what was going on, but by the time I would have climbed out of the recliner I would have woken Bailey up, so I just pulled my sleeping bag up over my head and tried to think about the tropics. There is a time and place for denial - it's not always a bad thing. Ha! I found out later in the day that her heart was definitely doing something, but it wasn't flutter or anything that they needed to be alarmed about. So, that's good. And tonight it was doing some funky things and Chrissy (another one of our wonderful people) called Dr. D and Dr. T and they weren't too concerned about this one either. Who knows, she might do things like this at home all the time. Never a dull moment here.

Dr. T came in today to check on Bailey. They were yipping and yapping back and forth and it was his turn to fire back, and he just started laughing! He said he thought of a great comeback but he couldn't say it. So he just stood there at our door and laughed at us. He wouldn't even let us in on it. So Bailey fired a few pieces of candy (Dots) at him, and he took off.

Well, time for bed. We might try to squeeze in a quick game of Yahtzee first though. Bailey's been beating me very badly. We've played 12 games, and I've won 2. Pathetic really. She's even starting to feel sorry for me. That's the strategy all along -- to get her sympathy and then move in for the kill! Nah. Just being stupid. They say that ICU psychosis is a real thing. They might be right.

Good night everybody!

Angie

Another Day in ICU

2007-11-05T23:02:00.001-05:00

Still hanging out in ICU. Nitric is down to 2. They're going slow and steady on the wean. Bailey's been nauseous again today - it comes and goes. She is able to eat and keep food down, but it's a matter of timing.

We had a little fun with Dr. T today. Our nurse rigged up a fake foley bag. It was a group effort to tease him a bit. He was a good sport, as always. He was out of town for a long weekend - we're glad to have him back. We like it when "our people" are in town.

Glad to give another short report - that just means things are stable.

Hope everyone out there is well.

Angie

A Restful Day

2007-11-04T23:53:00.000-05:00

Today was restful. Still in ICU - nitric is down to 3. Maybe the heart center tomorrow. Bailey's had some nausea today - still peeing.

Not much more to report. That's not a bad thing.

Good night.

Angie

Another Good Day

2007-11-03T21:25:00.000-04:00

Weaning very slowly on the nitric oxide - we're down to 5. Slow and steady is always good. We're in no hurry to get out of ICU. We have very good nurses and they are very considerate of our needs. There are a few inconveniences such as not being able to use my cell phone and having to leave the room to take a shower, but that's working out all right. I was able to leave Bailey with Jenny this morning and afternoon while Vickie picked me up to go get Josie and Marissa and go to Josie's volleyball game at the YMCA in Greenwood. That was such a nice and relaxing time. I knew Bailey was in very good hands with Jenny, so that put my mind at ease enough to enjoy the time away. Josie had a great time playing volleyball. She lost to the first team, but won against the second team. They each played 3 games for a total of 6 games. Between the 5th and 6th games, Marissa just looks straight ahead with slumped shoulders and such a hopelessness to her voice and says, "This is never gonna end." Ha! She's so funny. She was just wanting to make us laugh. Vickie and the girls then dropped me back off at the hospital and they all went out to Vickie's house to spend the night. They'll have fun out there. They love visiting Uncle Giff and their cousins Christian and Cody.

Bailey and I are having a laid-back evening. I'm reading a bood I found in the gift shop and she was checking he e-mail on the laptop and watching the Disney channel. She's now requesting some food, so I must go. A restful and medically-noneventful day -- a good day.

Have a great rest of the weekend!

Angie

A Peaceful Day

2007-11-02T21:55:00.000-04:00

We had a good day today. Bailey's feeling good and we laughed a lot today. We got here to ICU at 11:30 last night - they were delayed moving us down here because of a code. I don't like codes here - they're scary and sad. I just thank God every minute that it isn't us. We are in a much better room than last weekend. Last weekend we were right inside the double doors. This time, we are down the hall and around the corner. It's much quieter and darker at night. It is very pleasant down here. They've started weaning Bailey off of the nitric oxide. She was at 10 - now she's at 6 - and she's doing very well. A slow, steady wean is what we're praying for.

It was pretty funny last night after we got down here. I was nestling around in my recliner trying to get comfy and, after laying there facing the dark black window for a while with my nose about 6 inches from the glass, I was just starting to doze off when I heard something that sounded like someone tapping on the window. Gee whiz!! I always try to calm Bailey's nerves here at the hospital -- you know, that's what moms do -- and I tell ya, I contributed to her nerves at that moment. Her eyes got really big and she patted her bed, scooted over, and said, "Well, come over here and lay with me!" She's so sweet, and we both laughed. Then we talked through it and ended up seriously doubting that someone was tapping on our second-story window. After we both calmed down, we both slept really well.

Some really good friends of our visited today and delivered to Bailey a football autographed by Jeff Saturday. How cool is that?! She's been showing everyone who enters the room. I told her I was going to sleep with it in my recliner. I believe her response was, "Na-ah!"

When the doctors were coming around for rounds this morning, our curtain to our room and the sliding glass door were both closed, but we could see several shadows of people through the curtain, and one of them looked like they were leaning on the sliding door. We figured it was the group of doctors rounding, and Bailey says with a great big ornery smile, "Hey, Mom! We oughta slide the door open really fast and see who falls through the curtain!" We just sat there and laughed and watched the curtain, and pretty soon Dr. Ebenroth walks through the door. We had to explain why we were cracking up laughing. He laughed right along with us.

No anxiety issues today like Bailey had last night. Hopefully those won't return, but we mentioned it to Dr. Darragh, and he just said something like, "Well, duh!" She's an incredibly strong young lady. I know I've written about that before, but it really is true.

I get to go see Josie play volleyball tomorrow. I'm so excited about that! Jenny is going to come sit with Bailey while I'm gone. That puts my mind at ease - she'll be in very good hands.

Well, rest well, everyone. We'll try to do the same.

Angie

Cardioversion #23

2007-11-01T22:10:00.000-04:00

Bailey woke up to get weighed in at 3 pounds lighter. That was pretty exciting! She had a really good restful night (and so did I) and they took her for cardioversion around 11am. While they had her under, a urologist came and scoped her to see if they could find any reason why she had blood in her urine (that came back last night when they started the heprin drip because of her flutter). They found trauma from the foley cath they placed last Friday in her drain procedure and an ulcer-like area that was actively bleeding. They cauderized that and no more bleeding . . . however, she was in severe pain the first 3 times she peed after the procedure today -- crying and shaking and sweating. It is still painful to pee, but nothing like the first 3 times. And the cardioversion took 5 times before they could get her in rhythm, so she's starting to feel the muscle soreness associated with that. After today's procedure, Dr. D told us to not be surprised if we get taken back to ICU because of the nitric. It is outside of hospital procedure to have nitric on the heart center, and someone in the powers-that-be is insisting she go back to ICU. So, we've packed all our stuff again, and are waiting on the crowd of medical staff to whisk us away and down 2 floors. It's a little bit of disappointment, but we're both in a much better mental state than we were 2 or 3 days ago so it won't be so bad. And, Dr. D said he hopes we'll only be down there a day or 2 until he can get her weaned off the nitric. They haven't come for us yet and we were told they'd be here around 7:30 or 8:00. We just decided that I'm going to climb in bed with Bailey and we're going to pile all our luggage at our feet, and when they come to get us, assuming it will be the middle of the night, we won't even have to wake up for it. Ha!

I think Bailey's having anxiety issues. Goodness knows she has enough reasons to be anxious. She had a few moments of gasping for air and "not feeling herself" tonight. All her "numbers" on the monitor looked good and they took some blood to look at those numbers, and everything was fine. I think the recurrent ICU issue may have contributed. And everything she's been through physically today, it's no wonder. I think the typical person would have had anxiety issues a long, long time ago. We'll talk to Dr. D tomorrow, of course, to see if we need to do something about that. Hopefully the ICU stay will be short, easy, and uneventful.

Have a good night, everyone.

Angie

Happy Halloween!

2007-10-31T20:31:00.000-04:00

Still on the nitric. Bailey slept great last night and had a great day of eating and peeing. That's ALWAYS good. I didn't sleep too well and woke up with a big headache. Every time the door would open throughout the night, I thought they were going to whisk us away to ICU. So not much rest, but it was SO GOOD to see Bailey feeling so good today. She did, however, go into flutter again today around 4:00 or so. BUT, it's her normal flutter this time -- not any of that 170 heart rate stuff or everyone running in thinking she was in flutter when she says she isn't. This is her normal stuff. So much less dramatic today . . . much easier to take. Bailey did get a little mad for a minute and said she just wanted to go home, but she didn't let it keep her down. Dr. Hubbard came up to confirm the flutter and tried to pace her out of it, but that didn't work . . . and it hasn't worked on any of her other normal flutters she's had so we weren't surprised by that. Dr. D came up and said she'll be cardioverted in the O.R. tomorrow and he'll be the one doing it. That also made her less anxious about it. Dr. D says we'll be here through the weekend, at least. Unfortunately, all the fluid has returned. She really is back to her pre-procedure weight -- we were hoping the 100-year-old scales down in ICU were off by about 10 pounds, but just not the case.

We're hoping for another restful night for Bailey, and hoping to get some rest myself.

Josie and Rissy are trick-or-treating right now. We wish we were there with them. The hospital set up stations on all the different units for patients here to trick-or-treat -- it was so cute to see all the little costumes. Bailey couldn't participate because of the nitric oxide machine -- not portable -- so they brought the trick-or-treating to her. "Our people" are so thoughtful.

And to the Regulators, thank you so much for helping take care of us. We are truly speechless at your thoughtfulness and generosity. We are extremely touched and thank you from the bottom of our hearts. Maybe we can meet you all some day and give each one of you our own hugs.

Don't eat too much candy, everybody! Happy Halloween!

Angie

These Days Are Just Difficult

2007-10-30T22:27:00.001-04:00

Bailey woke up feeling good this morning after a pretty good night's sleep to see that the nitric oxide was down to 3 (weaning from 10). They were really trying to get her up to the Heart Center and, we did finally get here! We're in the heart center. That wasn't the end of it, though. By far.

She was nauseous and vomiting all day. We got up to the heart center about 2:00 or so (maybe 3:00 or so, I have recently lost all comprehension of days and time) and she was so miserably tired and worn out from vomiting that she finally asked for the combination of morphine and adavan that knocked her out for about 6 hours last week some time. She said all she wanted to do was sleep. Dr. D came up and stood with us for a while directing our nurse on what to give her and she ended up getting that combination. We were hoping she'd go to sleep and rest for the rest of the afternoon/evening, but that wasn't to be. They thought she was in flutter, so doctors and nurses started scurrying around. Even doctors we have never seen before came hurriedly in our room. We were getting scared. One of them asked something to the effect of, "Why are we here?" That did it. I went into mom mode protecting her young, and said, "I don't know. Why ARE you here? You guys are scaring Bailey." We since learned that that was normal procedure around here when someone goes into flutter (or at least that's what they said to make us feel better). So I explained to Bailey that (except for these past few days in ICU) we have always been at home when she went into flutter, so this was something new to us. But fortunately, the end result of everyone coming running, was that Dr. Hubbard and Dr. Darragh also came running, and they got things under control. They discovered Bailey wasn't in flutter (and she kept telling them she wasn't or at least didn't feel like she was) but her heart rate was in the 130's (her norm is high 80's to 90's). Something definitely was going on, but not flutter. They think a combination of her being exhausted, drugs, and her anxiety just made her heart flip out for a little while. So I went downstairs to make a few phone calls while Scott stayed with Bailey (he stopped by after work), and came back up to find everyone in our room again. Her heart rate had jumped up to 170's and stayed there. Dr. Hubbard was able to hook her pacemaker up to a machine that enabled her to "pace" her back to a normal rate. Gee whiz. So Bailey went to sleep seemingly comfortably. I went downstairs to meet my sister Cindy and my brother-in-law David, who brought me dinner, and had a nice dinner in the cafeteria with them. Bailey wanted them to come say hi before they left, so we went up to the room, and, would you believe it, there were about 6 people gathered in her room and Scott was waving me down the hallway. He said, "They want to send her back down to ICU." He was quite upset, Bailey was quite upset, but we had good, good people there (Chrissy namely - she's absolutely wonderful and helped see us through the night with her first flutter in ICU last weekend) and it was so nice to have my sister with me. She speaks the medical language (cardiology even!) and was a great calming force for myself and for Bailey and for Scott, I think, too. Anyway, Chrissy explained that she really needed to be in nitric oxide and they don't do that anywhere but ICU, but she would try to make it happen anyway. She made it happen. She said she can't promise that we'll stay out of ICU, if Bailey's numbers don't do better on the nitric, but she got the machine up here and Bailey felt immediately better on it. I knew she was feeling better when she said, what is that over there that Aunt Vickie brought? Vickie delivered the package a few hours earlier just before this all happened, when Bailey was feeling just awful. Then, she went through the basket picking out the fruit she would keep and the fruit that the nurses could have. She ate an orange - the first food she's eaten today that she kept down. Our nurse also gave her a nausea medication that they use with cancer patients, and that (maybe in combo with the nitric) made a huge difference. She was sitting up in bed watching Dancing with the Stars. (We're shocked, by the way, that Sebrina went home.)

I am just so competely grateful for my family, for all the doctors and nurses and various other staff members who help us on a daily basis here. It is obvious that they love Bailey and will do anything in their power to make her feel as good as she possibly can. We are so so so grateful.

And, thank you R&L for also taking such good care of us. It is a tough, tough time right now, and you will ever, ever know how grateful I am for you guys and for everything you do for us. "Thank you" is not enough, but since it's all I can muster right now . . . Thank you from the bottom of my heart.

We are at home on the Heart Center and hope to stay here.

Have a good night, everyone. I am praying that we do the same.

Angie

Cardioversion #22

2007-10-29T21:40:00.001-04:00

Yep. Believe it or not, flutter again last night. They put her back on a heprin drip (blood thinner to avoid clots) and the blood came back in her urine (don't think I told you that little detail before). They think the foley cath might have done some slight trauma when they put it in for the procedure last Friday. It cleared up after Saturday's cardioversion when they stopped the heprin, but started up again today. They stopped it again after today's cardioversion and is already looking much better, but it freaked Bailey out. She got nauseous every time she peed and I think it was just seeing the blood. There was quite a bit there - not just pink tinged. We were both up a lot last night. Her heart rate was bouncing from 120 up to 160, back and forth all night. She's not had that high of a heart rate with flutter before (well, until Friday night) and she couldn't sleep because of it pounding. Finally, she got really scared at 2:30 a.m. and had me step out and page Debbie, our very own personal nurse. Debbie is so wonderful to us. I felt awful calling her in the middle of the night, but she told me I did the right thing, and I really think I did. It was only after I talked to Debbie that Bailey and I could get any wink of sleep.

They took her back for cardioversion around 10:00. They had some trouble. The first 2 times, she went right back into flutter. They paged Dr. D and he came up and made some changes to her pacemaker setting and tried a third time, and it worked. That was so scary. These last 2 flutters haven't been like any of the other 20, so it's easy, especially in the midst of the ICU constant happenings, to get pretty scared. But she had a good afternoon and evening, and I'm sure she's waiting on me to get back down there. She's now timing my absences, giving me exactly the amount of time she thinks I need to accomplish my errand, whether it be a shower, phone calls, or blog pages. Ha! She's funny. I love her to pieces. And speaking of loving to pieces, Tom, Josie and Riss came to visit tonight. Tom's doing an incredible job of keeping them going - halloween costume is complete. I hear Riss is going to be a hippie. Tom better take pictures! Josie is going to be Hannah Montana - but she's not happy with her outfit. If we miss halloween, Bailey still wants to carve her pumpkin, so we'll be doing that a little late, but it will get done!

Love you all. Thanks Debbie for the basket! It's all wonderful and perfect! Thanks for not using Brian's radishes. (Thanks a lot, Brian!) And Bailey LOVED the black olives. They are the first thing she opened after cardioversion. The doctors were standing around watching her eat black olives, in disbelief. Ha!

And, Beal? You're right. He doesn't blink. Ha! Love you guys too - it was good to see you.

Hopefully a good night for all . . . including us.
Angie

A Fairly Uneventful Day

2007-10-28T21:19:00.001-04:00

We both slept better last night. I woke up several times to glance at all the numbers in all sorts of pretty colors on the monitor and they looked pretty good throughout the night. She had a pretty good morning, although she did throw up once. They weighed her early this afternoon -- they had to track down a scale. They must not weigh very much in ICU. Our nurse found a really old kind that they had at the doctor's offices before the digital ones - the kind that slides. Believe it or not . . . because we didn't believe it really . . . she weighed 111, which is what she weighed the day she had her procedure. Oh, we were so disappointed. We're hoping the scale is just so old that it's off by about 10 lbs. The chest x-ray this morning looked better than yesterday morning, although she still has some fluid in her lungs. She's still on nitric oxide, although they're weaning her down every 6 hours. At that rate, we'll still be in ICU tomorrow. I'm hoping Dr. D will come in and speed things up a bit. Bailey really doesn't like being in ICU. Everything is so much more intense - as it really should be since it's ICU. But it is very different from the comfort of the heart center.

She had a good afternoon visiting aunts, uncles and cousins. She got her foley cath out and was a new person. She can now move around much easier and is sitting up more - that makes it much easier for her to breathe. She'll breathe short and shallow at times, but her BP today has been pretty good.

Well, as seems to be our thing, we don't know what's in store for us short-term or long-term. We're hoping to be home by halloween. If we are, Bailey has decided to go trick-or-treating as a hospital patient. Ha! That will be an easy costume to create. Tom's at home helping Riss with her costume - they were supposed to go to K-Mart tonight to pick it out. Sometimes she has the attitude of, "Oh, I don't know what I want to be. Just forget it." Hopefully Tom and J0sie can help her out. Tom's already purchased the halloween candy, so he's doing a good job of keeping the household running.

I gotta get back to Bailey. She has sent me off to make her some popcorn (low sodium, of course). I'm sure she's tapping her fingers on her bedside table by now. Ha!

Love you all.

Angie

Very Long Night and Day

2007-10-27T20:00:00.000-04:00

Bailey went into flutter last night at 9:00. Well, poo. They immediately stopped the drain line to her belly, and put her on a face mask of nitric oxide. She scared me. She was laying there just fine and she lifted her head with big round eyes and said, "What's going on?!" Right then the monitors started going off as her heart rate jumped up to 180. Of course our staff started paging Dr. T, Dr. Hubbard and Dr. Darragh. Dr. Hubbard (the on-call cardiologist - she's wonderful too) ended up spending the night here to keep an eye on her rhythm strips. I guess her heart was doing some kind of beats that she's never done before, and I can't even begin to remember the name. Her blood pressure was dropping and other numbers were out of whack. How scary. It meant another cardioversion (#21), but in the midst of ICU and all the machines and lines that are already hooked up to her and the fact that she's inside the first 24 hours of a procedure, things were pretty heavy for a while. Finally, at 4:00 am, Bailey asked that I call her dad. She was getting pretty scared. All the all-night attention was pretty intimidating, but they were pretty concerned. They cardioverted this morning about 9:00 and, thank God, it was quick and smooth.

We were hoping that was the end of the drama for the day, but Dr. T wanted to try to drain just a little bit more off so they started the drain back up moving very slowly this time, and they took her off the nitric oxide at the same time. That didn't work. The nurse just walked normally into the room, as she had been all day long, and took out this dopler box thing which is apparently a definitive blood pressure reading. (Her art line reading and her cuff reading were not matching, so they wanted a true BP.) She couldn't find the pulse, so she asked another nurse to help. She found it right away and we all laughed, but we didn't laugh very long. Her BP was 48, and Bailey suddenly felt like she was really, really weak and couldn't move. Well, let me tell you. It was a time for prayer and I certainly did that. She paged Dr. T and Dr. Hubbard and they both instructed her to stop the drain and put her back on nitric oxide. They were finished with the drain. And she started feeling much better immediately back on the nitric oxide. So that's where we're staying for the night. We're still in ICU of course.

So T came back just a little while ago to check on her, and he decided to take out the drain cathether in her belly. She was, of course, scared to do that, but he did it, was very gentle, and it didn't hurt Bailey too badly. But now, the fluid is still coming out of the hole and keeps saturating the dressings. Bailey's feeling fine but she's grossed out because the saturated dressing starts to allow drippings down her side. She doesn't like that. They are going to note the time it takes to fill a dressing and then call Dr. T.

Hopefully our night will be completely and utterly uneventful. I'm hoping we can all get some sleep tonight.

Talk to you tomorrow,
Angie

Dr. T Sums It Up: "It's a good day, Bailey."

2007-10-26T19:36:00.000-04:00

Today started out rough. Our nurse woke us up at 6:30 to tell us she needed another I.V. and, even worse, they had to move so quickly that she couldn't wait the 15 minutes or so for numbing cream. So, it was another tough time getting it in, but we got it in and Bailey was, once again, incredible. We, of course, never got back to sleep, and her INR number was down a lot from last night but not enough still for the procedure, so they gave her 2 more units of PFF. They pre-treated her this time with Benadryl so no scary reactions. But she did get nauseous and sick earlier in the day. Her INR was low enough to do the procedure to draw off fluid and put in a central line (so she won't have to get stuck anymore . . . at least this visit) but not to do the lung biopsy. So Dr. T took her back about 2:30 and at 4:00 we were called to recovery where she was already feeling great. She said, "Look, Mom, I'm laying on my back and I can breathe." He took 2.5 litres off of her in surgery, and after they got her to ICU they hooked up the pump and I can't even begin to tell you how much more fluid has come off, but lots. Her tummy looks SO much better already and, the best part . . . ready for this? . . . she's peeing a BUNCH on her own . . . yes, that's WITHOUT diuretic. We're so happy. Dr. T and she have been going at it, of course. He keeps messing with her foley cath . . . amazed at how much she's peeing on her own . . . and he says, "That's impressive." She simply responds with, "I know I am." Ha! It's such a joy to see her happy and feisty and so good to see him happy and feisty. They are a pair.

I'd better get back up there. I'm on the heart center posting but she's in ICU. Scott's with her so I need to get back. Dr. T said she tolerated the 2.5 litres coming off great. There's always a risk of her B.P. dropping too low as all this fluid comes off - they're watching that closely. So far, so good.

Gotta go!

Angie

A Not-Quite-As-Bad Day

2007-10-25T22:13:00.000-04:00

Well, we didn't get the procedure in today because Bailey's blood was too thin (INR 10 - normal for her is 2 to 3) . . . actually WAYYYYYY too thin. At first they thought the blood test was wrong, but they did another one and it was 9.6. So, they spent the day (and still spending the night) trying to get her blood to thicken up. They gave her 2 units of FFP (fresh frozen plasma) and then some Vitamin K. They are testing her blood right now and we should hear within the hour the new number. They might have to give her 1 or 2 more units of FFP. The first unit of FFP went fine. The second unit was almost all the way in (they run it through an IV pump) and she felt a tickle in her throat. Hm. Didn't think much of it. Then, she started scratching and her ears and eyelids were itching. Then, in the next 2 minutes, she said, "Mom! My lips and throat are swelling up!" Oh my. That was quite scary. I have to get across to anyone who might be reading this entry, that Bailey is an incredible young lady. She was so scared and thought her throat was going to close up so she wouldn't be able to breathe, but we talked through those few minutes together and she stayed completely calm even though the tears were streaming down her cheeks. She was able to tell us that her lips were getting bigger and it was getting hard to swallow but she could still breathe. Her lips kept getting bigger but, fortunately, a million thanks be to God, her throat didn't swell anymore. She got bumps (hives, I guess?) on her eyelids and inside her mouth and throat and a rash on her chest and back and ears. Our wonderful nurse Amanda (whose birthday is today - Happy Birthday Amanda!) ran out to page everyone she could think of and ran back in to give her Benedryl in her IV. It's amazing how quickly that stuff made a difference. The itching and rash were gone in about 2 minutes. It took a little while longer (30 to 60 minutes) for the hives to go away and her throat to feel better, but at least it didn't get any worse. They say it was just a reaction to the FFP, which is fairly common. We were just grateful that she didn't have any of the other reactions we were warned about like fever, back pain, and other not-so-fun things.

Just before the plasma issue, in order to run the plasma, they had to give Bailey a second IV. They tried 3 times before they finally got it. Oh, it's awful to hold your child while they're crying and saying, "Mom, it hurts! It hurts!" But I would rather be no where else in the world than right there with her.

So, we just found out about an hour ago that her first I.V. started leaking and went bad. So, if she has to get more FFP (depending on the results of the blood test we're waiting on), she'll have to get another I.V. tonight. I just hope and pray that her blood gets thick enough to do the procedure tomorrow and Dr. T can put in a central line. That way, she won't have to get stuck anymore. You should see her arms. They have bruises and I.V. sticks all over her forearms and hands. She's really packing on the pounds in additional fluid too (weighed in at 110 this a.m. - her base weight is 85 - or at least I think it still is - she hasn't seen that since last December). They've had to give her fluid because of all the vomiting she did yesterday and, today, the FFP gave her additional volume. She's peeing ok, but it is not as much as they'd like, even with the diuretic. They say that should be better after they get some fluid drained.

She woke up this morning really scared about the procedure but, after all of today's challenges, I think she's ready for it now. Still nervous, of course, but ready.

Thank you all for taking the time to write back to us. You are giving us so much encouragement, strength, and love, that we can't even begin to return it. But we're glad to take it right now. It's very comforting. Thank you.

Love you all,
Angie

A Pretty Difficult Day

2007-10-24T22:10:00.001-04:00

Bailey had a pretty yucky day. It started out good (although she was up 2 lbs this a.m. - probably due to IV fluids) - she woke up hungry and ate her breakfast. It just didn't stay down too long. Then the vomiting caused lots of pain in her sides - probably because of all the fluid pulling, tugging and smashing everything - so they gave her morphine for her pain. Between that and a different nausea medication, she was pretty well out of it all day. She opened her eyes and sat up only to vomit. So, so hard to see her sick. One reason the last several months have been even tolerable us that she has felt pretty good besides the discomfort of all the extra fluid. But to see her so miserable, weak and pretty much out of it - completely not herself - is so hard and stressful on me. She would wake up enough to ask me questions throughout the day, "Mom, why do I feel this way?" "Mom, I don't want morphine anymore - I don't like this." "Why am I so weak?" Just made me want to cry. Well, in fact, I did have a small break down this morning. It was funny . . . I just got showered and dressed and could feel it welling up inside. I decided I needed to talk to Debbie. Not knowing where she was in the hospital, I paged her. I was just walking out of Bailey's room when I paged her because Bailey was still sleeping and didn't really want her to see or hear me cry, and I say, "Hi Debbie. Where are you?" And she says, "I'm standing right here looking at you." And I look up to see her standing about 10 feet away. Hours later, it was pretty funny, but at the time, I just walked up to her and fell apart. She and Dr. D took me aside and had a very nice conversation just basically reiterating everything and assuring me that this wasn't happening because her heart was getting worse. They made me feel better, but I knew I would be in trouble when I walked back in Bailey's room. She was instantly be afraid of why I was crying. She's been around me enough to see my minor breakdowns and wasn't too surprised to see this one.

The liver doctor came to see Bailey today and they did an ultrasound of her liver. And the thyroid doctor came to check that out. Haven't heard any results of anything really, so don't think they found much there. But Dr. D and Dr. T have consulted (and the liver doctor also) and they decided to drain some of the fluid off of Bailey's belly. So probably tomorrow afternoon they'll get her in. They're not going to just draw it out with a syringe, they are hooking her up to a line that will be controlled by a pump that will draw the fluid out over a 24 or 48 hour period. This will hopefully avoid any issues with dropping blood pressure. They're also doing a lung biopsy while they're in there and giving her a central line (an I.V. that can potentially stay in for weeks/months - maybe she can avoid all these I.V. sticks). We might have to spend the night in ICU - depending on how well things go. But hopefully she will feel much, much better afterwards. Procedures all have their risks, so Bailey and I are both a little nervous, but looking forward to feeling better.

Well, unfortunately, I've developed a blind spot in my left eye and now squigglies which only means a migraine coming on. I was so looking forward to a good night's sleep tonight. Oh well. Ugh!! I don't want a migraine. At leave I have some medicine with me. I'd better go take it.

Have a great day, everybody, and I'll keep you posted.

Angie

Admitted Today

2007-10-23T21:24:00.000-04:00

Bailey had a pretty rough night with nausea and vomiting. She's still in rhythm, but she wasn't able to keep her morning medication down. No fever or other flu-like symptoms. We went in for I.V. nausea medication and ended up staying at least overnight. I'm home at the moment staying with Josie and Marissa while Tom works, but I'll be able to return to Bailey within the hour. Scott's there with her and Jenny is her nurse tonight, so she's in good hands.

I'll keep you posted.

Angie

Another Cardioversion (#20)

2007-10-22T19:01:00.000-04:00

We had a great afternoon at the orchard yesterday picking out our pumpkins, drinking cider slushies, and driving through the hills to see the beautiful colors of the trees. It was a very nice and relaxing afternoon. Then, last night at 11:00, Bailey walks in my bedroom and says, "I'm out of rhythm again, Mom." Bummer! She was so nervous going into today's cardioversion after the difficulty they had on Saturday. But Dr. Darragh was the one doing it today and it went very smoothly -- it only took one shock to get her back into rhythm. We were so relieved. She's still recovering from muscle soreness from Saturday, but otherwise feels pretty good.

So, hopefully we're set for a while.

Have a wonderful week everybody! We're really enjoying the rain -- we've had so little of it this year on our side of town.

Angie

Cardioversion #19

2007-10-21T11:06:00.000-04:00

The week was a little eventful for us, but have managed to avoid any overnight stays at the hospital. We went to see Dr. Darragh on Wednesday because Bailey woke up and had gained 2 pounds. She was pretty scared because we've seen that things can change very quickly sometimes. So, fully expecting to get admitted, we packed all our bags for a 5-day-or-so stay. They took labs and did an echo, and Dr. D said that Bailey's heart function was actually improving. Her PA pressure is in the 50's (which is not normal but good for her) and, the most exciting news, her left ventricle is working too good to give up on right now. So he's still not ready to list her for a transplant. We have decided that we will be very grateful for that option if we get there but, for now, we'd like to avoid it. He mentioned again the possibility of an open-heart surgery to repair a leaky mitral valve and possibly remove some scar tissue left from the Berlin Heart cannulas. So, we kind of feel like a whole new world of possibilities opened back up for us. And, her createnine (???) (kidneys) level was back down. That's good! (That kidney thing scared us pretty good.) He changed some medications around and told us that he was comfortable with sending us home and dealing with the fluid at home. However, and this is what I love about Dr. D, he gave Bailey the option of going home or staying for some IV diuretic. He said that if she was too scared to go home and it would make her feel better to stay, he would do that. Just hearing him say he was comfortable sending us home made Bailey feel a lot better. And, I have to say, it made me feel better too. I think I was envisioning in the back of my mind the kidney thing happening again - that happened when she was up to 110 pounds and she's 106 now. We left there just looking at each other and saying things like, "Well, I think I feel a lot better after that visit", "Well, that was good news, wasn't it?", etc. So, we went home and unpacked everything. Ha!

Then, Friday night Bailey took her blood pressure, like she does every night, and it was normal and her heart rate was 85 (which is normal). But for some reason, she took it again, and her BP was good but her heart rate jumped to 104. So she took it a 3rd time, and it was back to 84. All within the span of about 45 seconds. We looked at each other, and just went on with the night. At 2:00 a.m., Bailey wakes me up and says, "Mom, I'm pretty sure I'm out of rhythm." So, I told her to take her BP (to get her heart rate, which is usually a tell-all sign) and it was 114. I told her to go back to bed and we'd call Debbie (our very own personal nurse) in the morning. We end up getting to the hospital for cardioversion #19 at about 11:30. We finally get in behind an emergency surgery at 4:30. (She's not happy - she can't eat anything all day.) But this time they had a tricky time getting her back into sinus rhythm. They had to shock her 4 times and she went into SVT (let's see . . . superventricular tachycardia) and her heart rate shot up to 180. They gave her 2 doses of a medication (adenasine - sp?) to bring it back down to normal. They don't know why that happened . . . whether it was a fluke thing or whether she's been cardioverted so many times that it gets more difficult to get it back. Dr. D wasn't the one who did the procedure . . . not to say at all that he wouldn't have had the same issues. But my hope is that, if there is a next time, he will be the one to do it and he will know just where to perfectly place the pads and it will take only one time. Needless to say, Bailey woke up and was immediately very sore. She didn't even have to move, and she started crying saying her back and her front were really sore (they place a pad on the front and one on the back). She doesn't have burn marks that are any worse than what she's had in the past (about equal to a minor sunburn), but her muscles definitely took a hit. They watched her for a couple hours to make sure she could eat and drink (even though she threw up after she ate) and her rhythm was still good, and they ended up sending us home at 9:00. She couldn't make it up the stairs last night (although she can this morning) so I slept on the couch and she slept in the recliner (about the only place she can get some decent sleep).

Marissa, who has been horribly terrified of "E.T." since seeing the movie about 3 years ago, wanted to watch it again last night to see if she liked him any better. And, it worked! She thought he was more funny than scary, so she has mastered one of her fears. She was with me and Bailey at the hospital all day yesterday and was such a good little girl. We played Aggravation all day. (By the way, for any of you out there who remember the classic marble game, in my day it was played on a pretty big wooden game board. Well, Marissa found one last week in the toy aisle at Meijer - it's a foldable game board and has room for 6 players instead of the 4 in the classic game. It's great fun for all ages - we're having fun in our family playing it. I highly suggest it for all gameboard-loving families!)

We missed out on our orchard plans yesterday, so we're going to try and get out today. Bailey thinks she's feeling good enough to go. So, pumpkins, here we come!

Have a great day everybody!
Angie

A Nice Weekend

2007-10-14T19:44:00.001-04:00

We had a nice, fun and "uneventful" weekend. Marissa's birthday party Friday night was a lot of fun. Only 1 of her 3 friends could come, but they had a great time together. Bailey and I sat around with our friend Jenny and played with Marissa's birthday presents most of the night. It was a lot of fun! We baked some sun-catchers, and didn't even have any chemical burns while playing with the Magic Rocks. I thought it might eat a hole through our kitchen table, but we didn't spill a drop!

Then Saturday we took Jenny to our family's annual bonfire. (It was supposed to be last week, but a bonfire during 90 degree weather just doesn't feel right.) Bailey held up really well during all the weekend activity. We rested most of the day today. Drove to Shelbyville to see my sister Cindy's new house. Such fun!

And, best news, Bailey's down 1 1/2 pounds this weekend. Yeah! She gets tired really easily and still can't walk far (she still has an extra 20 pounds on), but her spirits are pretty good. As you may have noticed on Nightline, her belly is very big and people mistake her for being pregnant. Well, we went to he gas station today to get a cold drink, and there were 2 middle school to high school-age girls staring, pointing and laughing at Bailey. I didn't think Bailey noticed, but she broke down crying when we got back in the van. It is very, very sad to me that people can be so hurtful without a second thought. Of course, as Bailey's mother, I wanted to chase them down, grab them by the shoulders, and shake them, but we all know that wouldn't have done any good. I'm just glad that we can offer Bailey a safe haven here at home within our family. And we have wonderful neighbors and friends who offer all their support and prayers. We are so tremendously grateful for each and every one of you. We love you all so very much.

Have a wonderful week everyone! We're hoping to stay out of the hospital, but we'll be sure and keep you posted.

Angie

Home Again

2007-10-10T20:28:00.000-04:00

So good to be home. Bailey's weight went down .2 pound - not much but at least it's in the right direction this time.

We'll keep you posted.

Angie

Up Another Pound

2007-10-09T22:12:00.001-04:00

Wow. Bailey just can't seem to lose her fluid. She weighed in another pound heavier this morning. She's off her I.V. milrinone and they're talking about sending her home tomorrow if she does well overnight. Again, she's feeling good except for her belly. It's just so big and uncomfortable. Dr. D did an echo today and said her heart function is stable - and says that getting this fluid off will be a long, slow process. If her weight goes up again in the morning, I don't know how comfortable we're going to feel going home. I just pray that her weight goes down.

Thank you for all your comments out there. It's good to hear from you "Nightline viewers". I am not surprised at all that Bailey has touched your lives. She seems to have a special purpose in this world - she is an infectious young lady. She has such a positive attitude and makes the best of every situation. She doesn't complain - just waits it out patiently - praying along the way. Such an honor to be her mother. And the patience and love that Josie and Marissa show is also incredible. They are home with Tom trying to live a normal life, as best they can. I know they miss us and we miss them. I am so torn. I would like to stay here as long as possible to get fluid off of Bailey, but we also want to get home to enjoy Marissa's birthday and the fall weather. We just don't have any control over anything right now -- well, except for her low-sodium diet which we're doing a really good job of -- so we just pray and take one day at a time. We know we're in the best possible place that we can be.

Bailey's friends, Paisley and Brian, came to visit tonight. It was so good to see them and so good to see Bailey hanging out with her friends. It was a good evening.

We'll keep you posted.
Good-night.
Angie

Feeling Better

2007-10-08T23:02:00.001-04:00

Bailey's feeling better today - has more energy. It's a good thing, because we had to move out of our room to the room next door - our ceiling started leaking. Today was just pretty much hanging out. They are starting to wean the milrinone tomorrow morning, so maybe we'll get to go home soon. But her weight went up a little bit this morning. Dr. D is still hopeful he can turn this around with medication.

Bailey got Dr. T good today. She gave him a WarHead (a super sour piece of candy) and he ate it - knowing full well what it was. So Bailey and I just stared at him waiting for him to make an awful face. Well, he didn't . . . BUT his voice went up nearly an octave. Ha! Bailey started laughing hysterically and said he sounded like a girl. Ha! It was good to have some fun with him.

Well, I guess that's it. Thank you for hanging in there with us, and thank you for all your prayers!

Angie

Way to go, Colts!

2007-10-07T21:45:00.000-04:00

Well, we couldn't make it to the game, but we watched on TV. Great game! They made it look easy. We got ahold of the coin toss people to let them know Bailey was in the hospital, and they were very nice. I didn't expect them to be upset at all, but I thought I might detect some hint of inconvenience . . . but not at all. They were just concerned about Bailey and told us not to worry at all about not being able to make it. In fact, they said they should be able to re-schedule her for another game. Marissa and Josie were a little disappointed too, but we are all part of Bailey's family and that means we all share in the sacrifices. They were troopers. Bailey has the best sisters in the world. They are also mature beyond their years. The difficulty about Bailey's health the last several months is that we don't know where we'll be from one day to the next. We can plan things -- and do plan things in an effort to think positively -- but that also opens the door for disappointment when the things you plan don't always happen. But on the flip side, some events do happen as planned so it all seems to balance out. Marissa is having a sleepover for her 8th birthday this Friday night. We're hoping to be home by then!

Well, Bailey came to track me down. I guess she's bored. She's seen too many episodes in the "Law & Order" marathon today.

Have a good one, everybody!

See you soon.

Angie

Back in the Hospital

2007-10-07T01:01:00.000-04:00

Bailey was admitted tonight. She's just been feeling really tired today and couldn't keep her dinner down. Then, after she vomited, she got really rag-doll limp and just not feeling good at all, so we called "our people". Dr. D increased her propafanone yesterday and thinks maybe he body is reacting to the new dose and just might need some I.V. milranone to give her a boost. Her weight is up a little bit - they're hopeful that the milranone will make her pee and get some more fluid off and, if it does, we might just be here for 24 hours or so. But they might decide to start I.V. diuretic to see if they can get more fluid off and, in that case, we could be here a 3, 4, 10 or 12 days. You know how that goes.

Unfortunately, we're going to miss the Colts game tomorrow (well, I guess it's today now). We're disappointed, but of course Bailey's health comes first. Maybe she'll get another chance later in the season - I don't know how that works.

Bailey just got her I.V. and ate a little bit of soup. I think we're both ready for some sleep.

Have a good Sunday everybody. Go Colts!

Angie

Did you see Nightline?!

2007-10-05T08:13:00.001-04:00

Wow! That was great. Bailey did a great job in her interview, didn't she?! And, just to set the record straight, Bailey is not pregnant. Her belly is where her extra fluid accumulates - she does look and feels like she's about 8 months pregnant, but she isn't. She's quite embarrassed to go out in public right now and is always worried that that's what people will think, but she's not letting it get her down. She's an incredible lady! I thought the Nightline people did a wonderful job putting the story together, and Vicki Mabrey is such an incredibly nice lady. It was a pleasure meeting her. We just hope that this story will truly help to change the way we look at pediatric medicine here in the United States.

Oh. She went out of rhythm again yesterday afternoon. We're on our way to the hospital for #18.

Have a wonderful weekend everyone!

Angie

Down 2 Pounds!

2007-10-04T07:42:00.000-04:00

Bailey's down 2 pounds this morning. Wow - what a relief. This is some kind of roller coaster ride. Dr. D wasn't too worried about the 3.5 pound gain in 3 days, but I must have been. Yesterday was a little difficult for me.

Stacia Matthews is coming this morning to interview Bailey for a quick piece for the evening news on Ch. 6 about the Nightline show.

Tune in to Nightline tonight at 11:30 on ABC! (or at least record it - ha!)

Have a good day everybody!

Angie

Fluid Creeping Back Up

2007-10-03T08:58:00.001-04:00

Bailey has gained 3.5 pounds in the last 3 days. Waiting to hear from doctors.

Love you all,
Angie

Visited by Nightline

2007-10-01T19:30:00.000-04:00

Spent all weekend cleaning our house since the entire world was going to see it. Ha! Our friends from the Speedway did the lights, cameras and sound, so it was really good to see them. They got here at 9:30 this morning and by 12:30, which was when the Nightline ladies got here, they had moved nearly everything out of our living room and set up their own little studio. Vicki Mabrey performed the interviews. She talked with Scott and me first, then interviewed Bailey. She was so nice! We weren't even nervous at all. Bailey did a great job! They were upstairs in her room for most of her interview. I can't believe the show is only going to be 1/2 hour -- they could make a good 2-hour show out of the documentary and the interviews from today. Vicki is going to be in D.C. tomorrow interviewing the FDA about the Berlin Heart. Can't wait to see what they put together. I'm sure they'll do a great job.

We see Dr. Darragh in the morning. Bailey was holding steady all week until last night when she gained 1.5 pounds. But she's still in rhythm! Yeah!! That's an accomplishment. Now we just have to get her fluid off. Poor thing really does look pregnant. She can climb the stairs now, but when she forgets something and needs to go back up, she'll ask one of us to get it for her. She poops out pretty quick. She went to the grocery store with me last night and rode in the wheelchair.

She's officially set up for a Homebound program for school. Two of her teachers called today to set up times to come out and help her with her homework. Her English teacher came out tonight. It's so nice to get help. We still really have no idea how long Bailey will be out of school.

Well, I'm tired. I'm gonna go put my feet up. Be sure and set your VCR's or DVR's or TVo's, or whatever you all might have, for this Thursday at 11:30 p.m.! Hopefully it won't get bumped for some other breaking news.

Have a good evening!

Angie

Home and Well

2007-09-27T22:03:00.001-04:00

Boy, it's nice to be home. Bailey's feeling well. Still not back to her old self physically, but seems to be well on her way. She's down 1.5 pounds this morning. Yeah! Slow and steady. That's just fine.

I was in the middle of painting our fireplace when Bailey went out of rhythm last time. I put the paint brush down when Bailey said, "Ah-oh. My heart rate is 109." Then a 10-day interruption for a hospital stay, and I got to finish today. Did the laundry, grocery shopping . . . and slept in. That was the best part. It was so nice to sleep in my own bed. Bailey slept well too . . . except for when she woke up around midnight choking on her spit! That was fun. I was so disoriented, I remember jumping out of bed and asking her if she needed a drink. She said yes, but I just stood there with my arms out and couldn't figure out where to find a glass! We were a mess. I think I was looking for a nurse's button. Ha!

It was so pretty out today. I'm glad I stayed home today. We had lunch on the back porch under our umbrella. So pretty! Planning on returning to work tomorrow.

Hope everyone is doing well. Keep in touch!

Angie

Enjoy the Pics!

2007-09-26T17:29:00.000-04:00

Bailey and nurse Amanda beading.

Bailey barricades herself in the bathroom after she begins the water fight.

Dr. T takes a nurse hostage and escapes down the back stairway.

Dr. Weissbluth brings Bailey origami paper and shows a little of his talent

Bailey and the shrinky-dinks.

Dr. Barkimer and "Dr. Matt" and the shrinky-dinks.

Nurse Angie, Scott and Nancy and the shrinky-dinks!

We DID get to see a sunset!

"Dr. Matt" shows "Dr. Peter" the lost art of gluing your palm.

Bailey's shrinky-dink gift to Pappa Tom.

Bailey takes her I.V. pole for a walk.

Bailey gets the "P" award!!

Dr. Bramlett begins the origami competition . . .

Dr. Barkimer and Dr. Weissbluth take to the challenge . . .

. . . and "Dr. Peter" and "Dr. Matt" give it a shot.

Dr. Bramlett shows Bailey how to make a dollar bill bow tie.

Ok. This is "Dr. Matt's" origami flower. Hm.

And this is Dr. Weissbluth's camera. I'm not seein' it.

Bailey's weapons are ready for Dr. T.

Dr. Ebenroth shows off his ability to juggle hospital tape to help Bailey complete her scavenger hunt.

We're Going Home!

2007-09-26T10:52:00.001-04:00

Distemper Shot

2007-09-25T21:49:00.000-04:00

Today was a lot of fun. We played a whole bunch and didn't really get much homework done, but I think it's ok to have a day like that. Bailey's weight was down .1 pound. They're not too concerned about not losing more because she's still peeing quite a bit. I'm wondering if a lot of it is because her appetite is back up. She actually gets hungry again. We don't know. They're continuing to keep close track of things. They turned off the milrinone today, so she's off all I.V. medication. That's so nice, because we can just get up and go now. We took two walks downstairs today to the library, the cafeteria, the gift shop, etc. We were looking through the library windows at a beautiful dark pink shrub in the courtyard (it looked like maybe a rose bush, not sure) and noticed a giant spider hanging from a web right on the other side of the window. Startled us pretty good, but Bailey's still in rhythm! I think I fell out for a few minutes, though. I'm good now, thanks.

Dr. T popped in to check on Bailey today. Boy, they razzed each other. Dr. T ended up "ordering" a 2.5cc distemper shot for her. Ha!

Our entire medical team, with the exception of Dr. D, was in our room today sharing their talents in origami and paper airplane construction. The competition extended out into the hallway where one airplane crashed into the ceiling; one crashed into a pole; and one landed in a trash can. Happy to report no eyes were poked out. The most impressive "work of art" would have to be Dr. Bramlett's stealth airplane; and the saddest "work of art" would have to be Dr. Weissbluth's camera. Don't worry . . . I took pictures! Ha!

Saw a really good movie today - "October Sky". It was really good! About 4 teenagers from a poor mining town in West Virginia who taught themselves how to build rockets. It's based on the true story about Homer Hickam, who went on to train astronauts at NASA. I highly recommend it.

Tom had a scare this morning. Marissa woke up about 5:30 and came running into our bedroom crying and panicky saying she couldn't breathe. Sure enough, Tom took her to see Dr. Vik today and she has croup. Marissa is very intelligent. I asked her on the phone today about her visit to the doctor, and she said, "Yeah, Dr. Vik explained to me that I have croup and at night my throat got smaller so it was really hard for me to breathe. But she gave me some medicine for 2 days to help my throat not get smaller. But if it does, I have to go see Daddy again and tell him, but I won't be scared because I know what it feels like now." Doesn't that just bring tears to your eyes? It did mine. I miss being home so much. Can't wait to get back, but I am perfectly fine here while Bailey continues her recovery. But now Marissa can't come see us here at the hospital for the rest of the week. It's a sacrifice for the whole family, but we'll make it.

Dave, our night nurse, is with us tonight! We haven't seen him in months! He said he's worked 4 days in September, but it must have been the only 4 days that we haven't been here! It's good to see him. We missed him.

Thank you, Dee and Mark, for helping us out tomorrow night. You're the best! And hope to see you soon!

Angie

Down 12 and 12 To Go!

2007-09-24T21:26:00.000-04:00

Bailey's lost 12 pounds! Yeah!! But her belly is only half gone. She's eating so much better - it's amazing how much easier it is to eat when you don't have 25-pounds hanging around your belly. No word yet about going home - could be 2, 3, 4, 10, 12 days? I just pray that she continues doing well and we have no other setbacks . . . ever. Her heart is still in rhythm. Yeah! I also pray that that continues for a long, long time . . . forever.

Got some algebra homework! Yeah!!

I got to take a nice walk today with Debbie M. and Stephanie. It was very nice and a much needed short get-away for me. Bailey didn't mind - she was being entertained by Corey from Child Life. She even let Nancy, her nurse, change her PICC line dressing while I was out, but Bailey did say she wouldn't do that again. Ha!

And now . . . for news we've all been waiting for . . .

I talked with a correspondant from ABC News Nightline today and they are scheduled to show parts of the documentary on Nightline (11:30 p.m.) on a week from Thursday (Oct. 4th) -- barring any unforseen urgent news issues. And, they are flying out here from New York on Monday to interview Bailey and "hang out" with her for a while. Isn't that cool? She's so excited. They said it doesn't matter where she is -- at home or still in the hospital. They'll go to wherever she is. That was nice to hear, that there's no pressure or disappointment involved if we are still here. But I'm hopeful that if Bailey continues losing fluid, we might go home this week. We'll see.

So, while we were stunned and speechless about the Nightline news, I found another message from someone here at Clarian that said Bailey's name was chosen out of a hat to do the coin toss at the Oct. 7th Colts game. Now, that's cool, too, huh?! Don't know any details about that, as it was just a short message, and I left a message in return, so I still have yet to get all the information. But I'll keep you posted on that too!

So, that's the scoop for now! Bailey walked all the way down to the cafeteria and all the way back today. I asked her if we needed to take the wheelchair, and she said no. She was right!

Good night everybody!

Angie

Down Another Pound!

2007-09-23T22:33:00.000-04:00

Total of 10 pounds! and still peeing! We're not disappointed in the 1 pound (as opposed to 3 pounds) because they said it would come off quickly at first and then slow down as it got down to the fluid that's been there a while . . . so this must be where it slows down. But Bailey is feeling great, eating great, sleeping great, breathing great and looking great. Such a good feeling.

Today was pretty boring really. We did some jewelry, watched the Colts game (yeah!), watched a couple movies, took a nap, played some Skip Bo . . . and that was pretty much it. It's a lot different on the weekends around here than during the week. Hardly anyone comes around at all on the weekends.

Have a good night everyone!

Angie