A LITTLE RAIN ON OUR PARADE!

Do you think we could get a little mental break from everything? Let me start off by saying that Kaidence looks the best she has looked in a long time. Her labs and everything else is perfect. She is starting to breath above the ventilator so hopefully they will start weeing from that soon and then I can hold her. Kaidence is the perfect patient.

The cardiologist came in today and has already started about when to take a heart offer. I am in no way ready at this point and think it is crazy to not give her a fair chance a getting better. In her defense she is worried that Kaidence will lose all of the time she has already accrued while waiting for a heart to this point. She sent a biopsy a Kaidence heart to a specialist and they are not sure that it was caused by a virus any longer. They will do some other mitochondrial test on it and we should know after we wait another long, long, long, weekend. If she does have a disorder it could cause even a new heart to get sick again. I don't think that they will find anything. She has already had so many different test testing for genetic and some mitochondrial disorders and they have all been negative.
Mike and I have a lot of decisions to make and we will revisit the issue with the cardiologist on Monday. We pray that we as well as the doctors will continue to know what is best for Kaidence. We pray that we will have peace and be guided with what the Lord wants for Kaidence. It sounds that they are not really wanting to wait for a recovery and that is very, very frustrating.

A LONG DAY!

Well, it is fair to say that I am exhausted. I think that my whole family is. Kaidence's room is buzzing constantly with people. This has been a wonderful experience for the hospital as well as our family. Kaidence made history and your prayers and faith helped it come to pass. I still feel that she has a chance to completely heal. We are all once again overwhelmed with the love and support that we feel. We still have a long road ahead, but we will make it.

Kaidence looks wonderful. I wish that you all could see her. She briefly woke this evening and smiled at me. She also reached for me to pick her up. I still have not held her, but after weeks of going without I can make it a few more days. The Dr's have told me that all of her labs could not be better. Her fever is gone and they are truly amazed at how smooth things have gone. Kaidence is doing perfectly. She had an Echo today and it apparently looks well.

The boys loved the whole TV thing. I am sure you can all picture McCaden's response as they ask him to answer a question. He took charge of the microphone, straightened up in his chair, cleared his throat and gave his response. They all seemed to think that he would do great in some sort of communication profession. I think I must agree.

We are blessed to have such wonderful friends and family.

NEWS!

We did the interview. Channel 2& 5 as well as the Tribune & Desert News.

Channel 5, 6:00-6:30

Channel 4, 5:00-5:30

PRESS CONFERENCE!

So we are doing a Press Conference at Primary's at 2:00 today. It may be live or it may be on later. They have invited all stations. Wish us luck. I don't even like to watch myself in home movies. The funny thing is that they want our kids with us.

Kaidence is looking GREAT!!!!

In Recovery

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Here is our Dear Kaidence in Recovery. We really hope that Recovery in this setting means that this is the start of the long road to complete recovery. With the Berlin Heart Kaidence's left ventrical actually has a chance to reconstruct and get healthy. We can't express the love and thanks we have for all the support our Kaidence has recieved. The Staff here at Primary's has been amazing as usaual. Our room feels like grand central at the moment with all the doctors and nurses caring for our little one.

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Here is a little explanation of what you are seeing in the picture. The three tubes on Kaidences right (left on the picture) are drainage tubes to let the blood around her heart drain and not accumulate. She is still intubated that's the big blue and clear tube that eventually goes into her mouth. The Berlin Heart is the red device on her diaper. It is red because you are seeing Kaidence's blood flowing through the Berlin Heart. You can tell how oxygenated her blood is by the color of the Berlin Heart. It is really an amazing device. You can feel it and see it beat. It feels like you imagine a heart would beat like. If you turn it over you can see how it is beating. What this means for Kaidence is that she is not sweating anymore. She no longer has to struggle and work to get blood through her system. She looks really good. We are so lucky that Primary's was able to support Kaidence with an lvad device.

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Primary Childrens has asked us to join them in a press conference to tell a little of Kaidence's story and the Berlin Heart.

WE HAVE BEEN BLESSED!

Her chest is closed and she did AWESOME!!!!! They will take her to her room soon.

We want to Thank all of you. Your love and support has kept us going today and for the past many months. We have learned and grown so much during this experience. We will always testify of the miracles that we have seen. We are not out of the woods, but we are making progress and we took a BIG step today.

We are so grateful to the many nurses and doctors that have taken in our little kaidence and our family. You have shown us so much love and concern. They have spent countless hours to help make this miracle happen for our little Kaidence.

We are grateful to know that Kaidence had so many angels watching over her today. I know that she was never alone.

Most of all we thank our Father In Heaven for the beautiful blessings that he has given to our family. This experience has defiantly drawn us closer to Him.

We are sorry the link for "I Know That My Redeemer Lives" on you tube was wrong in our previous post. This one works today. It is a beautiful rendtion of the hymn. It means so much to our family. http://www.youtube.com/watch?v=8athR6fvshY

UPDATE #5

Well, the break in between updates was a little too long for me. It's official, Kaidence has the first Berlin Heart in Utah. She did excellent. They said that the surgery went very smooth. She has already come off the heart/lung bypass without any problems. They will wait for the 2 hours in the OR to see how the right heart does and make sure the bleeding is under control. If she needs the other side done then they will do so. We feel so blessed that this opportunity came to our family. I cannot begin to tell you how wrong a heart transplant felt for Kaidence over the last few weeks. Nobody could understand where I was coming form. Dr. Everritt told us today that the first day she was listed that a heart offer came but it was passed by because it was poor quality. She has been surprised that there has not been any offer since. I know that it is because this is what was meant for our little girl at this time. She has paved the way for many others and we are so proud of her. Stay tuned!

UPDATE #4

The cannula has been stitched into the left ventrical. They will now start stitching a cannula into the Aorta. Bleeding seems under control. We are busy cutting out hearts to place all over her room.

UPDATE #3

They came out and gave another report. Kaidence's chest is open and her ribs apart. They have just placed her on the heart/lung bypass. They have drained the blood from her heart and it now cycles through the machine and then back into her lungs. They are stitching in the first cannula's of the Berlin Heart

UPDATE #2

They just came out to let us know that the first incision was made around 9:30 am. The sedation process went very well. We'll keep ya'll posted when we hear more.

UPDATE #1

Well, we just said our goodbye's to Kaidence and I cried like a little baby. Many of Kaidence's past nurses came in this morning to tell her goodbye. We need this to work not only for us but for everbody in the PICU. We have had a tough run of things the last month with our many little friends. Kaidence has many little Heart Buddies watching over her from Heaven today and I know that they want her to do well. She has been the only girl among so mnay little boys in the PICU.

The Dr.'s feel that Kaidence may possibly have a chance of a recovery from the procedure. A recovery that may allow her heart enough time to rest and heal to the point that it would return to normal function and not need a transplant. They will take her off the list for about 3 months to give her that time. We will be here into the new year possibly to her 1st Birthday. Thanks for all the support you are giving us. We love the messages and are glad that we have so many people watching her blog today and waiting with us.

SURGERY DAY!!!

I woke up this morning around 6:00. I didn't sleep well last night. Kaidence knows something is happening. She started getting very agitated this morning when they took all of her stuffed animals and pictures out of her crib. Her heart rate is 198-207. She is listening to her primary songs at the moment and calming down a little. We are very nervous but that is to be expected. The staff at the hospital has been amazing. They have worked many long hours to put everything together and we are so grateful to them. We will keep you all up to date the best we can.

THE DAY BEFORE SURGERY!

So I went home last night and slept very well. Kaidence however had a rough night. One of her internal lines that draws blood and gives an acurate blood pressure went bad and they had to place a new line. Her heart rate was in the 190's and continues to be. She has suddenly spiked a fever and we are not sure what it is from. We need her fever to drop and get her heart rate under control. She has an ultrasound scheduled to look at some blood clots that have formed in her body and another echo. We are going nuts. I have tried to find a Christmas Stocking kit for Kaidence to give my nervous hands something to do tonight and tomorrow but have been unsuccesful. I need to keep my mind busy. I am excited and scared all at the same time. I just pray that if this surgery is meant for Kaidence that she can get over whatever is giving her this fever so that she can have the surgery tomorrow. I may go crazy if it gets moved again.

Tomorrow during the surgery we will be in the waiting room. I will have my laptop with me so that I can update the blog. I promise to give updates as often and as soon as we get them. They may be short but it's at least information. So keep posted and Thanks for everything.

Little Ian 's funeral was today and my thoughts and prayers continue to be with his family. We love and miss them.

SURGERY SCHEDULE AS OF THIS MINUTE!

It looks as though they did the operating room run through and discussed everything with the different teams that will be involved. They said that things went very well. The equipment will be here tomorrow morning, but the team will not arrive until 5:00 pm. We are very anxious and I keep looking at little Kaidence's chest because it will never look the same again. They have decided to do a pump for both the right and left side of the heart. So she will have two pumps. The plan is to take her to the Operating Room Wednesday around 7:30 or 8:00 am.

I explained to McCaden that next time he sees his baby sis that she may have some other tubes and things. Please keep us in your prayers if you don't mind. I am sure that everybody is tired of me asking, but it helps so much. We will always be willing to return the favor. We love you all and Thank You for the many countless hours of service that you all have given our family.

KAIDENCE IS STILL HOLDING STRONG!

Thank You once again for everybody that has prayed and fasted for our family. Last night was the first time in about a week that I have not woken up with a very sick tummy. I actually slept very well and I feel much more calm. I have never been so nervous, but I am now so grateful for the little peace that I do feel. Kaidence looks well today and we are so thankful that we have the option of the Berlin Heart to buy us some extra time. The equipment for the surgery is on its way and the team of Dr's will be here in the morning. Kaidence will have many hurdles to overcome but she is a tough little lady and she will put up a good fight. I can't wait for the day that we get to bring her home although I am a little sad that she will likely not be home for Christmas. Santa may be paying a visit to the PICU this year because I refuse to split my kids up for Christmas. I need to find a little tree and some decorations so that I can get them up and in her room. Yes, I do put my decorations up early every year and I LOVE IT! I guess I have got a little of my grandma in me. So let me be the first to wish you HAPPY HOLIDAYS!!

I KNOW THAT MY REDEEMER LIVES!!!

Dear family and friends,

Thank You to all of you that have prayed and fasted for Kaidence today. I feel at peace and know that Kaidence is being watched over and kept safe. We put her in a little sunday dress today. I went to church at the hospital and was able to share my testimony. I am so thankful that I know that Heavenly Father loves us and I also know that "My Redeemer Lives"
Please take a minute and click on the link below and feel of the love our Savior has for each of us. His love is unconditional. He wants us to have Joy!
http://www.youtube.com/watch?v=8athR6fvshY

Love,
The Stephenson Family