Cardiologist check-up

YouYou's first check-up with the cardiologist was on Monday of this week. I'm so thankful that she is such a good car rider since we will be making so many trips to B'ham :) She did great and was not scared at all, but she was a little more "active" during the echo (kind of like an ultrasound) than she was the first time we visited Dr. Romp (this was the time she laid still for at least 20 minutes).

Overall Dr. Romp was very pleased with how YouYou is recovering. Her incision is healing well and her appetite has increased. There are 2 areas of concern at this point though, the leakiness in the mitral and tricuspid valves and the small VSD's (holes) that have appeared since surgery. I have been told it is not highly uncommon for these holes to appear around the patch in VSD's as large as hers, but I still don't like it :( She is on medication that in time will hopefully help decrease the leakiness in the valves, and the Dr. said he "might" be seeing some small improvement since her last echo (but he wants to see more). The not so good part is that because of her type of transposition the Dr.'s cannot really tell the size of the holes through an echo. So...we are scheduled for another heart cath on May 21st (to determine whether or not they see a need for YouYou to undergo another sugery). I asked Dr. Romp if I should just try to get used to the idea of frequent heart cath's in our future, and he said we shouldn't be needing to do them every few months but it is something she will have done more than other children because of her uniquely formed heart.

What does this mean?? Well, this means I'm asking God for a miracle. I'm asking and believing that if it is His will that these holes will either be tee-tiny non problematic holes or that they will be gone entirely! I know God can do this, and I also know that He might choose not to...regardless though I will pray and I will trust Him. Will you join me?

Pictures...scroll down to see a happy YouYou

In CICU, one day after surgery...

Taken Saturday, 4 days after surgery...

The swelling was really bad at this point...


Could she be any more pitiful? She loved this bunny though...

Trying to have fun in the halls...

Me, YouYou, and Libby, taken on Wednesday right before we left for the first time...

Roz, and Ruth...2 of the sweet nurses who took care of YouYou on the floor...

Taken on Saturday of our second visit. YouYou was starting to look and feel better after they got rid of all that extra fluid. She chowed down on some noodles and chicken right after you left Bert, Tina and Sophie! Notice the shoulder..she insisted on wearing her gown like that that evening.

Yummy, yummy...

Messy but happy YouYou...

YouYou giving mommy some back pounding therapy...

Taken yesterday afternoon...at HOME!!! Connie, she loves the crown and sunglasses...thank you!

Kissy lips...

Taken at bedtime tonight...she was so happy today.

Sitting in her big girl bed, which she does not sleep in yet. Thank you for praying for me!!!!!

Home again, Home again

What a beautiful day it was to be driving home from B'ham with my sweet little girl smiling in her car seat! We made it home around 2:00 and we spent most of the afternoon playing outside. It felt so good to be with all three of my children - in our home and in our yard! The boys just loved and loved on YouYou...it was so sweet.

This will be short tonight because I am so very tired. YouYou decided she was terrified of the clock in our room last night so she slept with her arms locked around my neck most of the night. I hope to post some pictures tomorrow sometime. I have some that show her the first time we went home, and then ones taken later that show how much better she looks after the swelling went down. I also hope to catch up on my emails tomorrow, or soon after...I might just decide to love on my kids all day instead :)

I talked to Christian's family this afternoon before we left and they were still waiting on the surgery to begin. I called his mom's cell phone this evening but did not get an answer but I will try again tomorrow. I will continue to pray for this family and I would love for you to join me.

Hugs to you all...

Late night update - pray for Christian

I just walked out in the hall to get a clean gown for YouYou and happened to see the nurses rolling Christian down the hall. His grandmother told me they think they have a heart for him!!! Please pray that this will be a perfect match and that Christian's body is in good enough shape to accept the heart at this time. Please pray for the doctor's and nurses and for Christian's family as well as the family of the donor.

Monday update

Well we didn't get to go home today, but it was a great day regardless. The Dr.'s have switched YouYou from iv lasiks to oral ones and they wanted to be conservative and keep an eye on her one more day to be sure she did not start swelling up again.

So what has YouYou been up to? Well, last night she fell asleep without hardly any crying and she did not make a peep all night. She had bacon for breakfast, corn and fruit for lunch (and then almost all of Neesie's turkey off of her sandwich), and then chicken, brocoli and grapes for dinner (followed by a small helping of Neesie's chicken primavera). Now she is eating a cookie for dessert and Neesie and I are having a brownie- thank you Cindy! She has also been drinking very well. We have been for 5 or so walks today and she has been riding/pushed around on the Dora bike. We've visited the playroom twice and sang a few songs with Colin, the little boy who was singing Jesus Loves Me in the CICU waiting room during YouYou's surgery. **Colin's big brother Christian is waiting on a heart transplant. He is at the top of the list and they are from New Orleans so they have to stay here until he gets a heart. Please keep this sweet family in your prayers.

Tomorrow morning the Dr. will do another echo on YouYou's heart and if all looks well then we will be headed home in the morning sometime! Praise the Lord!!!

Thank you, thank you, thank you for your prayers. Thank you for your encouraging comments and scriptures. Thank you for your calls (Joie I can't believe I've missed your call 3 times). Thank you for the meals both at the hospital and at home. I don't even know who brought some of the food by our home, but I am so grateful. Thank you all for walking with us, crying with us and laughing with us!! And Thank you to the One who has comforted us and never left us alone. Praises to the King!

Hopefully our next post will be from home...

Good News

Hello everyone - this is Melisa. I just received a call from Neesie. She & Erica wanted me to let everyone know how well YouYou is doing.

She had a chest x-ray today and it looked MUCH better than the x-ray yesterday.

Her swelling has gone down and she seems to feel much better. She is looking & feeling better than she has since her surgery.

She is eating much better and even fed herself some of Erica & Neesie’s Chinese food.

And, I saved the BEST for Last…

She might be able to go home tomorrow!!

Thank you all for your prayers. Please continue to pray for this sweet family.

Erica is going to try to post later this evening.

Saturday Morning update

I'm sitting here in the "Family Room" with my mommy. We were blessed to run into our sweet CICU nurse Nicole when we got here yesterday and she got us this room for the night. It is free, and is right outside the CICU (literally 10 or so steps). We got some pretty good rest last night once we finally got back to the room (around midnight). I woke up a few times because the phone rang, but it was always a wrong number. At 8:40 this morning I jumped out of the bed and looked at my watch and was horrified -visiting hours started at 8:30! I was still groggy from the little bit of sleep medicine I had taken last night but I put on a bra, brushed my hair and ran out the door to the CICU. I'm sure I was a sight, but I was greeted by the sweet smiling face of our daytime nurse, Wendy. She is not a nurse we have had before, but I immediately knew my little girl had been in good hands since the shift change. She had also had a wonderful nurse last night who had told me she would call me if she cried for me during the night. Thank you Lord for these precious, caring hands that have been with my girl.

Anyways...I know you really want to hear about YouYou. The most important thing is she is in good hands and she is going to be fine. She will probably be moved to a regular room today and hopefully we will only be here for a few days. They are going to give her iv antibiotics (possibly already have) to treat her for pneumonia. I don't think they are positive that this is what she has but they want to go ahead and start the antibiotics because her chest x-ray looks worse this morning. They had considered putting her chest tube back in because she also has some excess fluid in her chest area but they don't think there is enough to warrant that. I guess I'd rather have her with an iv again than a chest tube again, but really I just want her to feel better. I can't even describe the defeat I felt when Dr. Romp said he wanted to have her admitted again. I wanted to crumple into the floor (yes, I know that sounds dramatic). YouYou was sooooo glad to be home and her little spirit was starting to return, and I know she thinks this must be a never ending nightmare. I keep telling her she is here so that she can feel better and we can go home again, but I wonder if she believes me :)

My mom went to check on YouYou while I was typing and got an update...she is still sleeping and they just gave her the first round of antibiotics. The nurse said they have to keep her for about an hour afterwards and then she can be moved to a regular room (we'll be in room 520).

I wanted to let you all know that I have gotten several emails from people that want to read our family blog and I will definitely respond to each of you as soon as I can. I haven't posted anything to that blog since before YouYou's surgery so you aren't missing anything :) I would love to have you read about the amazing journey we have been on the past few years...may God receive all the Glory.

Some of you have called too, and I'm so sorry I haven't returned your calls yet. It hurts so bad to talk right now that I'm trying to just save my talking for YouYou and the doctors. I know the antibiotic I am on has to start helping soon. I am thankful at least that I am not running a fever so far today.

Specific prayer requests:

- That YouYou's body will respond to the antibiotics quickly
- That the nurses and doctors will have wisdom as they treat YouYou
- That YouYou will be in good spirits and will cointinue to eat and drink
- That I will feel better so that I can be fully attentive to YouYou's needs
- That His light will shine through us

I'll try to post again soon...