Monday, January 31, 2005

Surgery Went Well

The surgeons are very happy with the surgery. They were able to remove a thin layer of scar tissue from the inside of her left ventricle. It was not thick enough to make them believe that it will help her pulmonary pressure come down, but nonetheless it was a success and now we just need to wait and see how her heart responds. The Berlin Heart is working "beautifully" and Bailey tolerated the whole procedure "very well". The surgeons reiterated that Bailey is "one of a kind". That's for sure! They left her sternum open (stretched her skin over the opening) to alleviate any restriction the ribs would put on her heart, and they will keep her sedated and on the ventilator until they close that, which should be in the next day or 2 - a much easier surgery than today. Then they will begin waking her up.

All I want to do is give her a great big hug, and I can't do that with everything attached. I thought I would be a pro at this, but I lost it when we went back to ICU to see her. She is also in isolation because of her open sternum - they are being very careful of germs and we have to put on gloves and a mask to enter her room. The Berlin Heart is just a little rectangular box sitting on her stomach with some tubes leading into her chest. It's amazing to simply think about that little box assisting her heart. It's very overwhelming right now.

Only time will tell if her heart will thrive from the removal of the scar tissue or if this is a bridge to a transplant. The doctors have done their work - now we're going to sit back and watch God do His.

Thank you again for all your thoughts and prayers -- they have been truly a comfort to all of us and Bailey will really enjoy hearing from you all in the comments. I'm very tired and need to go now. I feel like I've rambled here, but I wanted to update all of you. Today was tough, tomorrow will be better, and the next day even better.

Talk to you all soon!

Mid-Day Update - 1:30 p.m.

Hi everyone! All is going very well. We got a report that they were able to do some type of "repair" - removal of scar tissue on the inside of her left ventricle - but don't know how much, if any, they were able to remove. They are beginning to hook her up to the Berlin Heart -- don't know if her heart will be able to heal from the "repair" (assuming they were able to remove scar tissue) or whether she'll be put on the transplant list. Nurse said Bailey's doing very well and tolerating the procedure just fine - none of her "numbers" are jumping. She is a strong little trooper!

Bailey told me last week that she really felt like she was going to be put on the Berlin Heart but that her heart would heal and she'd be taken off of it and everything would be fine. We'll just have to wait and see! I've been praying every moment of every day for just that very thing (well, maybe minus the Berlin Heart - haha!).

Thank you to everyone at R&L for the lunch, goodies, gifts, cards . . . everything! That was a wonderful surprise and very, very touching to all of us. There are about 20 to 30 family members gathered around in the waiting area . . . all here for Bailey. Her biggest disappointment in all this is probably that she's missing the "party", but she's too busy with her own mission right now. We'll party later!!

I'll check in at least 1 more time before the day's over.
Love, Angie.

Surgery Day

Good morning everyone! Bailey is in surgery. Everything went well this morning - she had a really good attitude, although still a little nervous. Last night she told me, "You know, Mom, this is a win-win situation -- if I don't need the VAD [Berlin Heart], that's good. And if I do need it, I get to help out lots of other kids." She truly is an amazing person - the bravest I've ever been around (and that includes adults). A funny story . . . yesterday we were walking around the hospital and I said, "I think this would be a really neat place to work, but I don't think I could handle being around terminally-ill kids - I'd cry all day." Then later last night just before bed, Bailey went to the bathroom, came back out and said, "You know you said you wouldn't like to work here because of the really sick kids?" And she continued with all seriousness while working on a word search, "Another big one for me would be emptying the pee hat."

It will be a long day - they say it's not unusual to be early afternoon and not have even made it to the heart yet. They have to go through lots of scar tissue from her earlier two surgeries. This library that I'm sending this from is beautiful! It's the original entrance to the old hospital - beautiful stained glass, arched marble entryways, beautiful wood. This might become my periodic "escape" for the day, so I'll try to post another entry early afternoon, and then again tonight after surgery.

Thank you for all your cards, gifts, prayers, and kind thoughts. Oh, and Bailey enjoys reading the "comments" that you guys can post to this site. (I think you might have to go to the main page of and create a user ID and password to be able to post a comment.) I'll keep in touch. [Also, I've noticed the time on these "posts" might be off. Right now, it's 9:30 -- geez! It's only 9:30?!]

Love you, Angie.

Saturday, January 29, 2005

Sat., 01-29-05

Today was uneventful - thank goodness. Dad brought Bailey's X-Box in and that took up most of the day. Still losing water weight - so glad we're here this weekend instead of home. It was too scary to see Bailey with all that extra weight. But she can breathe easier and walk easier now. She didn't realize she was feeling so bad until she started feeling better. Only 2 days until the big day. Wow - I can't believe it's almost here. We'll keep you posted.

Love you all,

Friday, January 28, 2005

It's me, Bailey!

Well, today when we got to the room that I am in this weekend, I was given an extra dose of Lasix. Within an hour and a half, I had lost one liter of fluid that had been in my stomach. I am feeling very good. And, proven by a breathing test that I was given to by a nurse, I can breathe in more air than when I had that extra fluid in my belly. It feels great to be able to take deeper breaths. We took a walk to the McDonald's here at Riley and I could walk all the way there without having to stop and take a break. We are all very excited that this has happened and I am going to be given more at 7:00 am. And from what fluid I've lost today, I am expecting to lose more in the morning!

Luv to everyone!

Admitted on Pre-Op Day

Well, we didn't expect this, but Bailey's being admitted to the hospital today. Over the last week, the fluid in her abdomen has increased steadily. This is just tangible evidence that her heart needs help. So, the doctors wanted her admitted over the weekend so they could keep an eye on her and have better control of her diuretic (did I spell that right?) through an IV so she can be in "tip-top shape for Monday". Bailey was pretty upset at first, but then Shondra, the Child Life Specialist, turned into "Santa" and brought lots of fun projects to keep us busy this weekend. The tears quickly turned into smiles.

The documentary people followed us around all day today and are very kind and considerate, and very nice to us all. They interviewed a lot of medical people and us as well. Bailey likes them all and gave a great interview! Dad, however, cried like a baby. Haha!! Of course, I did too, but that's expected.

Gotta go - Bailey doesn't like the dinner they brought to her, so I have to run downstairs and get her McDonalds. I could actually go for that too!

Please continue your prayers for us, and we'll check in with you later.


Sunday, January 23, 2005

Surgery Scheduled for 01-31-05

A huge "thank you!" to all of our friends and family who have sent cards, gifts, made phone calls, and prayed, and are continuing to pray, for Bailey. You have all been a great comfort to us, but our comfort truly lies in God. We do not know what the future holds, but we know Who holds the future.

Bailey's surgery is scheduled to begin at 7:15 a.m. - barring any unforseen emergencies of another patient. The most time-consuming part of the surgery will be getting through all the scar tissue from her previous 2 surgeries. The doctors have said it is not unusual for it to be early afternoon and the surgeons have still not made it to the heart. The procedure of removing the scar tissue from the inside of Bailey's left ventricle is not expected to take very long, but then they will take their time getting her off the by-pass machine. If her heart tolerates the surgery and they can get her off the by-pass, our hospital stay is expected to be about 2 weeks. If they have trouble getting her off the by-pass, the surgeons will hook her heart up to a ventricular assist device (they've chosen the "Berlin Heart" - see below for more info). This VAD will either allow her heart time to heal and then it will be removed, or it will show the doctors that her heart is not going to recover and they can then put her on the transplant list. If a transplant is necessary, it will be a heart transplant (as opposed to a heart/lung transplant) since the VAD will have allowed her lung pressure (which has always been very high) to come down.

I will try to post daily to this site after her surgery so all of you can be kept up-to-date, as I know you are all very anxious.

As for the Berlin Heart: This is a device that has not yet been approved by the FDA for use in the U.S. The Riley surgeons have been working with people in Berlin to try to accomplish this. We have VAD's over here in the U.S. but they only come in adult sizes - the Berlin Heart comes in 3 or 4 different pediatric sizes, making it much for efficient in pumping for children and less risk of clotting and other mechanical malfunctions. Riley has asked us if we would participate in a documentary about the Berlin Heart that a news crew from the Speedway is putting together for public awareness. We did not hesitate to agree to help, but we confirmed up front that no one would be "mad" at us if Bailey ended up not needing the device -- which is definitely what we are praying for! I'll let you know what evolves here.

The scar tissue in Bailey's left ventricle was a result of her original defect -- aortic stenosis. It was formed in the womb. The doctors have known it was there and have been keeping an eye on it for 12 years now. I think they were hoping it wouldn't cause problems, but as Bailey's heart has grown, the scar tissue has reached its limit and will not stretch any further. They say the rest of her heart is in great shape -- even the valves that they repaired nearly 9 years ago. She had an irregular heartbeat back in April '04 (atrial flutter/fibrilation) at which time she had to be cardioverted (shocked) back into rhythm at St. Vincent. Our insurance has thankfully agreed for Riley to take over since a transplant has been in the picture as a possibility, and St. Vincent doesn't perform transplants. We have recently been told that children born with aortic stenosis do not normally live past infancy. This must be the reason why the surgery that Bailey is facing now doesn't have much research out there for the doctors to review. We're pretty much in unchartered territory. The cardiologist believes and is hopeful that the surgery will work, but I think the surgeons are thinking maybe not. It will be interesting to find out what God thinks.

I love you all, and we truly appreciate everything you've done for us and will do for us in the weeks to come. Please continue praying -- Angie