ENJOYING LIFE!

First of all, sorry to everyone that is upset at me for not posting in so long. With only one car now I don't have as much time up here at the hospital and this is where I blog from. The last few days have been AWESOME! Kaidence looks like Kaidence should. She is smiling, trying to giggle and not wanting to miss anything, She is so awake and alert. She has been doing physical therapy everyday and things with that are going surprisingly well. Kaidence got a new stroller to make the wagon rides go a little easier. She is loving life while she is waitng for a new heart. I am so very thankful that we had the opportunity to do the Berlin Heart on Kaidence. I have absolutely no doubt in my mind that Kaidence wouldn't be here without it. I think that is why it felt so right and Mike and I had such an overwhelming peace regarding it. We are having more good days than bad days for the time and for that we feel so blessed. Just in case you are wondering, Kaidence wants a new heart for Christmas this year and we would be so grateful for such an amazing gift!

WITH UP MUST COME DOWNS!

Well, as with any up must come some downs. Kaidence has been very agitated today. She just did not seem very happy. She started throwing up formula last night. Her NJ feeding tube which is in her intestines to keep her tummy empty was accidentally pulled up to be an NG (allowing the food to go into her tummy). Her stomach has not had food in it since the first of October and could not handle the sudden quantity of food. They moved the tube back down to an NJ and that seemed to fix that problem. Today her heart rate has been very high and they cannot figure out why. They did an EKG and x-ray and did not see anything obvious. Tonight they will do an echo to be sure that her right heart is doing ok. I hope that tomorrow will be better.

Thank You once again for all of your fasting and prayers.

THINGS ARE WELL!

The last tw0 days have gone very well. Kaidence continues looking great and we are savoring every moment of that. We went on another wagon ride today and Nanna came with. Kaidence loved every second of it unless we stopped. We tried showing her the snow out the window but she cried and just wanted to keep moving. She wanted us to keep walking, She is starting to become a little busy body lately. She is always wanting to see whats going on.

They did her dressing change yesterday and today. Things are looking good and they were able to take off the wound vac. One less thing to haul around on those wagon rides. Here infection site is healing and so we are just waiting for the big moment that our pager goes off. I love how happy and healthy she looks right now and am hoping that a new heart will do the same thing for her so that she can get back to life. I know it won't be "normal" but it will be more of a normal for our family than the hospital life is. I wish you all could see her and appreciate how wonderful she looks.

The boys have had a great time playing in the snow. I stayed home with the boys last night and we had some good time together. They also all slept in my bed last night. Mike ended up on the couch and I ended up at the bottom of the bed, sideways of course. I was kicked in the side all night long and it made me wonder if my boys could really be that tall already. McCaden woke up perky and happy like always and asked, "did you sleep well mom?" I just chuckled to myself. We are going to the ward party tonight and the boys are pretty excited. A special visitor is coming and I am hoping that the Christmas wish list hasn't changed too much.

FIRST WAGON RIDE EVER!

Kaidence looks wonderful. I can't believe how great she looks. I put her in real clothes today and like a real baby she pooped all over them. She flunked her swallow study today but that is OK with time and some meds it should get better. Kaidence went on her first "just for fun" outing today. We took her on a wagon ride in the clean area of the PICU. She loved it and looked so proud of herself and yes, we did take a lot of pictures. I will see if Mike can post some for you to see. We feel so blessed that Kaidence is doing so very well. Those who never saw Kaidence so sick would never understand how far we have come. I am grateful for those that care for her and hope that they take some pride in how well she looks. They work so hard to care for Kaidence and her many needs. They have become like family to us and we are so thankful that they are in our lives.

ON THE LIST AGAIN

The last two days have been pretty busy. Kaidence has a new tooth for a total of two teeth and it looks as though another is on it's way. Her gums are VERY swollen. They tried feeding Kaidence again this time real baby food and it did not go so well. I think that she was far too tired to focus on eating. We called the speech therapist in the morning to feed her when she was really awake but it took them 4 hours to come to her room. By that time she was ready for a nap. Kaidence's fever continues and her counts continue to rise again. Today we took her in for another CT scan to make sure they can't see any infection. Nothing was found. She had a pretty good day today. She was happy and playing when we left the hospital tonight. Tomorrow she will have a camera sent down her nose to record her while she eats. They asked me if I thought it would bother her. I couldn't help but laugh. Seemed like a silly question to me. Things seem well lately and I keep waiting for the bottom to drop out on us again. We are grateful that things ARE going so well and best of all Kaidence was re-listed last night for a heart. Yea!!!! We are ready to get a heart, get better and get home!

MY FIRST SUCKER!!!

Well, I have got to make it quick today. Kaidence looks great and she has had a good day today. Speech Therapy came in and worked with Kaidence on taking a bottle. She did not want to open her mouth for them because only bad stuff happens lately when she opens her mouth. So we gave her a sucker and let's just say that she loved it and required a bath after the experience. We will continue working on the feeds. She has had a fever off and on and is still on many antibiotics. The boys held her yesterday and she loved it.

TUBE IS OUT!!!

Kaidence is much more awake today and her breathing tube is out. She looks great. Tonight the boys are coming up to the hospital to hold their sissy and we are all going to watch a Christmas movie together in her room and have some treats. We are all going to church in our home ward today as well. Her white count is the same but her CRP is still coming down. We will keep you posted. Thanks again for everything.