LOVING KAIDENCE!

Kaidence looks wonderful. My mom and I decorated her room for Christmas last night and it looks so cozy. Mike held Kaidence last night for the first time in a long time. They looked so cute together. You can tell she sure loves her daddy. My mom came up and held Kaidence as well. She received lots of love last night. The therapist will come in on Monday and we will try giving her a bottle. She hasn't had any food in her little tummy for over a month.

I spent a lot of time home today with the boys. We put up the tree and everything else. I have a lot of Christmas stuff and so it is always a full day event. Make that a day and a half if I have little helpers. I will miss spending all of my time at home. I love this time of year. Thank You for all of your prayers and we will keep all of you in ours. We will also pray for little Noah's family. He passed away earlier this week.

GOOD NEWS!!!!!

Ok, I can breathe now. Kaidence's test came back showing that she does have a form of a Glycogen Storage Disease and in the next couple weeks we should learn more specifics. However, it is a mild case and should not cause a new heart problems in the future. They don't feel that there is much muscle involvement beyond the heart. We are so relieved and once again feel so blessed. I feel guilty that I let my attitude sag a little the last couple of days. So I am sorry to everyone for being a not so good example of faithfulness. Thank You once again for your prayers.

STILL WAITING!

They decided this afternoon to take Kaidence in for a little surgery to place a tunneled line that will go to her heart. They will beable to draw from it and give meds. It will be better than what she has at this moment because it will reduce infection and complications.

We still have not heard about her test results and are anxiously waiting. A preliminary test came back showing high staining on the biopsy so we are concerned about that but it doesnt give us a clear answer. It gets harder and harder to function everyday with the stress and worry that I feel, but I guess that is part of my trial.

HOLDING MY BABY!

Well, we did it. Kaidence was extubated today!!! I am so excited, I was able to hold her and I LOVED IT!!!! She is so beautiful and I love seeing her smile. She surprised us all when she wanted to sit up and play. It made me feel so good and I am so happy that we have made such a big step in the right direction.

We continue to wait for the results of the test. The stress that I feel is beyond being overwhelming. I think that I might have an ulcer or something going on. I wish that we would have had the results yesterday morning like we originally thought. However, I must say that everybody has been hounding the genetics doctor to get them fast. WE wait with faith and hope. I am not sure what will happen if the test comes back positive. I don't know that I want to think about it.

We went to parent teacher conferences today for McCaden. I am so very proud of how well he is doing in school. Especially with everything that has been happening at home.

Camden and I have been able to spend a little more time together. I came home the other night and he was so excited as he said "mom, you came home." It broke my heart to think that he would think that I wouldn't. He is a cute little stinker that lights up my day with his smile and snuggles.

Well, it would not be a trial if we did not have a big road block. The pathologist looked at the heart tissue that was taken after Kaidence's surgery. They have found some questioning things. Kaidence has Glycogen in her heart tissue. This could be nothing or it could mean that Kaidence has a serious disorder that could affect a new heart (so they would not transplant her) or she could have a muscular disorder that would cause her muscle tissue to waste away, eventually causing death. Or she could have something that could possibly be treated. They tell us not to get too worked up over it but that is a little hard when this can totally change our future. Please continue to pray for us as well as the doctors if you don't mind

TRUSTING!

First of all, you will never know how much I rely upon your words and advice as you leave comments. I know that as I am hurting or feeling a certain way that in a sense I am not alone. Knowing that people read Kaidence's blog and actually care how I feel makes me feel so loved. The decisions with Kaidence's health are in the Lord's hands. It is too risky to not list Kaidence for a heart. We could get one tomorrow or in 2 months. We don't know if she could be on the machine without complications and let her heart heal or if something could go terribly wrong and we just passed on a heart offer. Too many unknowns and I feel that the Lord would not expect me to gamble on my child's life. We have once again turned everything over to the Lord and he will find a way to bring to pass what is best for Kaidence.

Kaidence has had a slight fever today but it is now gone. Also her white blood cell count is higher, showing that she may have an infection of some sort. An infection at this point could be bad but we just have to wait and see. Her lungs are starting to clear the fluid and we are hoping that she can continued to get her closer to breathing on her own. We will keep the blog updated.

TOUGH CHOICES!

Mike and I continue to think about whether or not we re-list Kaidence for a heart right away or if we wait and give her own heart a chance to recover. The cardiologist wants us to re-list right away because she is afraid that Kaidence will not get a heart before complications arise from being on the Berlin Heart. I on the other hand wanted to wait and give her a reasonable chance to recover. We don't know what to do for Kaidence. Maybe she needs another blessing, I don't know but I know that I have a very heavy weight upon my shoulders at the moment. I don't want to chance complications, but I also don't want to get rid of her heart if it can heal. We need some very power inspiration at the moment and we need it fast.

She has done wonderful the past few days. She was weened off the ventilator for about 1 hour and then suddenly her oxygen started dropping. In the xray the lungs look a little wet so they have had to put her back on the ventilator and bump the oxygen up to 100%. That is the most help she has needed breathing the past 4 months. Maybe the Lord is trying to tell us to slow down and wait. I don't know that they would transplant her at the moment with her lungs needing so much help. It is hard to feel like I am Kaidence's mom anymore because I am always in the way here and I never get a minute alone with her. I feel absolutely helpless.

The boys are tired of everything. They want everything back to normal and I can't blame them. I feel an extreme amount of guilt either way I do things. Whether I am home or at the hospital.