ON THE ROAD TO RECOVERY!

Kaidence looks great! She has been pretty awake today. She had another echo this morning and that looked great as well. GREAT! GREAT! GREAT! The doctor came and looked at Kaidence's vocal chords. The left side is moving but the right side is not. They are hoping that it will not be paralyzed forever. I guess that this means that Kaidence will have a big heart and be soft spoken. Probably the biggest problem is that the left lung still has her heart sitting on part of it. We don't want the lung to close off because it could cause pneumonia. We are praying that her lung will eventually get strong enough to handle it without the help of the cpap machine. If not then we may have to do a trach tube. We are also hoping that her vocal chords will work enough to protect her airway if she were to throw up. That way she would eventually be able to get rid of the feeding tube and eat on her own.

Kaidence is off some meds for heart rate & blood pressure. Sedation is weening off as well as her milrinone ( heart function medication). Numbers and labs look good and she has pink cheeks and warm feet. I can also cover her with a blanket without her getting it soaking wet. Over all everyone is very pleased with Kaidence's progress. She is growing like a weed and looks so CUTE!

EXTUBATED!

Well, Kaidence just got extubated and placed on a cpap machine to help stint open her lungs. The left side of her lung is a little smashed from her big new heart. Things seem to look well and we are hoping that she can stay extubated. They are scoping out her vocal box tomorrow and we are hoping that she has some sensation with her vocal chords. I can't get over how pink she is. I no longer have a pale gray baby girl. YEAH!!!!!

UPDATE-TEST

Kaidence has had 2 of the 3 test. What they thought was a blood clot is just stitches and what a big relief that was for everybody. She went and had her diaphragm test and all of that is normal. None of the nerves have been damaged she just has a big, strong healthy heart. I don't think I have ever said that before. We are taking her to the OR around 4:00 to have them open up her voice box and check all of the vocal chords. I hope that goes well. Kaidence woke up and was looking all around. I walked to her bedside to talk to her and she started kicking her legs. She then starting pushing her little bottom up. That is her sign that she wants you to pick her up and of course I can't with the breathing tube in her. Needless to say that made her mad and her blood pressure showed it so they had to paralyze her again. I think that once she can get extubated things will be easier on her and they won't have to keep her as drugged.

TEST!

Kaidence has a very busy day ahead of her today. She had an xray and echo this morning and they think that she may have a blood clot in the left atrium septum....not so good. She is also scheduled to go downstairs and have her swallow study done as well as a test on her diaphragm. They said that sometimes the nerves to the diagram can get cut or damaged and so they are checking out all of that. I am most nervous about the clot because once again the next stop for it would be her brain. Other than that she is doing well. They pulled 2 chest tubes today and so that is a good thing. We knew that we would have more ups and downs along the way and that is ok. We can't have everything at once and sometimes we just can't have everything.

MERRY CHRISTMAS!

Merry Christmas everyone! I hope that all of you have had a day full of love and peace. Kaidence is doing well. They tried extubating her last night but they had to put the tube back in. That's ok, she will get it done. Tomorrow they may do another test on her vocal cords, because they worry that one of them may be paralyzed. Other than that all of her labs continue to look great. She is on all of her immunosuppresives and other steroids that make her a little to wild so they have had to paralyze her. If she moves too much she gets a higher blood pressure and they don't want to pop any stitches.

I keep think about the little family that has given our family this gift. My heart is full beyond any words and they will ALWAYS be in my prayers.

I am posting our family letter again because it wasn't up long before Kaidence got her heart and I know that there are many of you that I don't even know that check her blog. I want everyone to have it. Merry Christmas.


Dearest friends and family, December 2007

During this time of year we often reflect upon the many blessings that we have been given. As many of you know our family has much to be thankful for. We have been given a trial to overcome but through it we have learned so much about life and are living many of the important lessons that life lends us. We know without a doubt that this trial has been a blessing to our family as well as many others. It is our hope that we can all learn from life’s trials, because if good can come from them they will in turn bless our own lives as well as the lives of others. Trials are blessings not punishments, you just sometimes have to look a little deeper and wait a little longer to see the blessings arise.
One thing that we have learned is that despite all of the bad that we see in the world, there are many good people. People are good and most want to do good. It is not very often that we hear about all the good that people do. When we look at the world as a good place we feel that we will be more likely to radiate that good ourselves. We have been blessed by so many. We are so grateful to the many that have reached out to our family and for the many ongoing hours of service that have been so graciously given in our behalf. We have been served in so many ways and through it have taken the opportunity to continue teaching McCaden and Camden as well as ourselves about the importance of service and serving others. As this is the season of giving gifts, we thank you for the gifts of service that we have received. Our hearts have been touched by the kindness and love of others. We will forever carry with us the gift of service that you have imprinted upon our hearts.
Miracles do happen. We have witnessed this many times during our journey. Kaidence is still with us. Kaidence is our little miracle. Never before have we been in a situation where we have seen the Lord’s hand in everything that is done, until now. The spirit has guided our family and the doctors, to know what is best for Kaidence and he has provided a way to make it happen. We thank everyone for all of your many prayers that have been given. We have a bitter sweet miracle waiting to take place as we wait for a new heart for Kaidence and we give thanks to whomever it comes from for giving kaidence a new chance at life for a new year. We will hold this gift precious forever in our hearts and we will never forget. As we love and nurture Kaidence through the years we will also love and nurture the spirit of the heart that has been given in hopes that we can in a small sense give back.
Take peace in knowing that families ARE forever! Take the time to hold your loved ones a little longer. Spend more meaningful time together and remember that our Savior Jesus Christ loves and knows each one of us. Do what you can always and then he will do the rest.
We wish you the Love and Peace of the season and hope that it will be carried with you always in your hearts.
With Hope and Love,
The Stephenson’s
Mike, Shauntelle, McCaden, Camden and little Kaidence

QUICK UPDATE!

Just a quick update. Kaidence did wonderful last night and all of her labs continue to look great. They are wanting to keep Kaidence mellow and quiet for the next few days however, Kaidence wants different. They are weening her off of her breathing tube because she is doing so well and think that she will be extubated later today. We are so happy.

My heart feels very full today. The PICU is unfortunately very busy today and I know that this is not the place that people want to be, but the hospital I know will do their best to make it special. Merry Christmas to all and we love you!

POST SURGERY UPDATE!

Well, Kaidence looks great. They have to keep sedating her because she tries to kick and play. She looks great and all of her vitals and labs look awesome. They seem very surprised at how great all of the numbers look. They keep saying "Did someone forget to tell her that she just had a big surgery and heart transplant?" We are so grateful that we can now look to the future. Thanks for all of your love and support.

KAIDENCE DID IT!!!

Kaidence is all done with the surgery. The surgeon just came out and said that things went very well and that he thinks that Kaidence will do very well. They did an echo on the new heart and guess what, she had great function. I can't believe it. We get to go and see her in about 10 minutes. We can't wait. Thanks for all of your prayers. Please remember to pray for the family that gave us this gift.

We know that we have a rough road ahead, but we are one step closer to home. We will keep things posted.

UPDATE #9

Kaidence is off bypass. Still some bleeding and they still aren't sure if they will close her chest. But she is doing great they say.

UPDATE #8

Kaidence now officially has her new heart and it is beating. Part of this little child that has passed is still living on as this little heart beats. What an amazing thing to feel. Knowing that our little girl is alive because of somebody's unselfishness. I know the spirit of this other little child will live on in Kaidence. We feel such gratitude for this gift.

Kaidence is still on bypass and they still need to sew up the holes where the cannula's used to be. They said that things are going great.

To Jack's family and Ian's family. Chris and Caroline say hi!

UPDATE #7

The new heart just got here and her old heart has been taken out. We are anxiously waiting.

UPDATE #6

Kaidence is now on heart bypass and doing fine. The driver to the Berlin Heart is turned off and they are unstiching the cannula's from her heart. The new heart should be here and minute.

UPDATE #5

The first incision has been made.

UPDATE #4

Chris just came out and updated us. Nothing has really happened yet besides lines and prep. They don't think that the heart will even be here until 6:30am so we still have a long ways to go.

UPDATE #3

Well, they just took Kaidence in the OR and she seems very happy. One of the surgeons is leaving to go and pick up the heart. They will take a Lear Jet to pick it up. Thanks everyone for hanging with us during the night. The heart won't be here for a couple of hours.

UPDATE #2

It's about 2:30 am and they came and got us from our sleep room (where I really didn't sleep much). OK so I think I am officially very scared. Maybe it is because I am so tired or maybe because I knew before that it was still a ways away - maybe both. They came to get us so we could have a few with kaidence before all of the Dr's. came in. We think things are still on for 3:00am.

UPDATE #1

So I can maybe type now without shaking. I was answering the door just as the phone rang and so McCaden answered the phone. "Shauntelle, it's Emily" is all that had to be said and I knew and at that exact second my heart broke in two. I have a breaking, thankful and joyful heart all at the same time. Who knew that was possible? The surgeon just called and said that the surgery has been pushed back to 3:00 am so we have a long night ahead. Kaidence is happy as can be. We gave her a bath and put her hair into pigtails (because it makes her spunky) and mike painted her toenails a lovely pink. Thank You for all of your prayers.

WE HAVE A HEART!

We just got the call. Kaidence is getting a new heart. The surgeons will go to pick it up tonight around 8:00 pm. The surgery won't be till after midnight and what a perfect Christmas gift. Kaidence will get a new heart on her 10 month Birthday. As you pray for Kaidence, please be sure to pray for the family that gave us this most beautiful gift. My heart breaks for them but I hope that they can feel of the love and gratitude we have for them. Merry Christmas. We will update through the night.

OUR CHRISTMAS LETTER TO YOU!

Dearest friends and family, December 2007

During this time of year we often reflect upon the many blessings that we have been given. As many of you know our family has much to be thankful for. We have been given a trial to overcome but through it we have learned so much about life and are living many of the important lessons that life lends us. We know without a doubt that this trial has been a blessing to our family as well as many others. It is our hope that we can all learn from life’s trials, because if good can come from them they will in turn bless our own lives as well as the lives of others. Trials are blessings not punishments, you just sometimes have to look a little deeper and wait a little longer to see the blessings arise.
One thing that we have learned is that despite all of the bad that we see in the world, there are many good people. People are good and most want to do good. It is not very often that we hear about all the good that people do. When we look at the world as a good place we feel that we will be more likely to radiate that good ourselves. We have been blessed by so many. We are so grateful to the many that have reached out to our family and for the many ongoing hours of service that have been so graciously given in our behalf. We have been served in so many ways and through it have taken the opportunity to continue teaching McCaden and Camden as well as ourselves about the importance of service and serving others. As this is the season of giving gifts, we thank you for the gifts of service that we have received. Our hearts have been touched by the kindness and love of others. We will forever carry with us the gift of service that you have imprinted upon our hearts.
Miracles do happen. We have witnessed this many times during our journey. Kaidence is still with us. Kaidence is our little miracle. Never before have we been in a situation where we have seen the Lord’s hand in everything that is done, until now. The spirit has guided our family and the doctors, to know what is best for Kaidence and he has provided a way to make it happen. We thank everyone for all of your many prayers that have been given. We have a bitter sweet miracle waiting to take place as we wait for a new heart for Kaidence and we give thanks to whomever it comes from for giving kaidence a new chance at life for a new year. We will hold this gift precious forever in our hearts and we will never forget. As we love and nurture Kaidence through the years we will also love and nurture the spirit of the heart that has been given in hopes that we can in a small sense give back.
Take peace in knowing that families ARE forever! Take the time to hold your loved ones a little longer. Spend more meaningful time together and remember that our Savior Jesus Christ loves and knows each one of us. Do what you can always and then he will do the rest.
We wish you the Love and Peace of the season and hope that it will be carried with you always in your hearts.

With Hope and Love,
The Stephenson’s
Mike, Shauntelle, McCaden, Camden and little Kaidence

GIVE THANKS!

First of all please notice that Mike put on some updated pics. Up in the upper left hand corner of the blog is another link that will take you to more pictures. Thanks a bunch love. Looking at the pictures I am amazed at how far we have come. I can picture what she used to look like when she was very sick ( I didn't take pictures of Kaidence when she looked really bad because if something happened I wanted to remember her happy and healthy).Things are very well and we are getting ready for a Christmas like no other. I think that although our Christmas will be very far from traditional we will forever hold this Christmas in the softest parts of our hearts. Every time I walk down to the cafeteria, I get emotional at all of the people bringing in wrapped Christmas gifts to donate to the hospital. That hospital could never be what it is without all of those that donate. Those donations of whatever it may be are put to very good use and the children love getting a special something brought to their bedside just because someone is thinking of them.
We also could never be what we are without all of you. Thank You for all that you have given. And a very special Thank You to the family that made special secret delivery to our home last night. Your gift and example will be carried on forever in our home as long as we are alive. We will think of the sweet sacrifice that was made by your children as we teach our children like you have taught yours. May you be blessed for your love and sacrifice. We will blog the big things that take place over the weekend, if anything different takes place. If Kaidence does get a special gift we will notify everyone by the blog and we will then keep it up more frequent during the Christmas Holiday.... So still check in every once in a while during all of the craziness. Merry Christmas and we love you.!

TIRED AND SWEATY!

Kaidence is still pretty sweaty today. She seems tired and a little fussier at times. I think that she has more teeth on the way because she chews on anything and everything. She also gets very excited when she she is about to get her numbing medicine for her gums. I don't think that she feels very well the last couple of days and I just hope that we can keep her healthy so that she can get a heart. I am starting to feel a little more anxious.

POOR RIGHT HEART FUNCTION!

So sorry that we haven't updated for a few days. Things have been pretty busy with Christmas on it's way. Kaidence has been sweating a lot the past few days and I felt that something was not right so they did an echo and found that her right heart isn't pumping well at all. The Berlin Heart is only helping with the left side because in the past her right heart was able to keep up. They are placing her back on IV medication to help improve the function. If that does not work they will look at once again replacing the pump but this time going with a bigger pump. The pump now holds 10cc of blood and I think the next size may hold 20cc (not positive though). I think that the medication will do the trick. We should know more in the next few days. I just don't want to place another Berlin Heart for her right side.

We are hoping that all is well with everyone and that you all know how much we appreciate your love and thank you for all of your generosity. We are so blessed.

RYKER RETURNED TO HEAVENLY FATHER !

We are sad tonight after Kaidence's neighbor 7 week old Ryker suddenly passed away this afternoon. He is playing in heaven with his big sister that passed away 12. months ago. This family needs your prayers very much. We are so sorry for their loss and we will miss them very much. What a great family they are and will continue to be with two perfect little ones watching from above.

FAMILY SICK????

Today was hard for me because I was not able to go to the hospital to see Kaidence. I woke up feeling not right. I still don't know if I truly have anything, but I don't dare take any chances at the moment. Mike was going to see her after work but he came home not feeling well also. We can't afford Kaidence getting sick and being placed as a status 7 on the list again. I have been told that she played all day long and I am glad that I have the best babysitters ever....Don't get too jealous, I do pay a lot for them. The boys have been crazy today and McCaden was very upset at me for being sick because it meant that he didn't get to go to the Ostler's today to be tended. We are very grateful for all of the help that we are given and we prayer that you will be blessed for all of your sacrifices for us.

STILL WAITING!

Well, we continue to wait and hope that all will keep going well. Kaidence looks great and we are so happy to spend these days with her. We are so grateful to many, for without all of you this trial would be so much harder. Thank You for all of your love, kindness and support.

To all of my PICU buddies that are no longer at PCMC I am missing you all a lot today. You are always in my thoughts and prayers. If I can do anything for any of you please let me know.

CAN'T GET THE WIGGLES OUT!

Kaidence can't stop wiggling. She is rolling from side to side in her crib and is trying to pull herself up from a laying position. She no longer stays strait up and down in bed but always seems to be sideways. She loves being held and socializing with all of the nurses and staff. Her legs never stop kicking and she loves chewing on her hair comb. We love having her so awake, alert and happy. She had a dressing change today and the nurses and doctors seemed very excited about the progress that has been made with the wounds. They say they look very good and have made much improvement. We are so happy about that. We are literally just waiting and hoping for the best for Kaidence's future.

GOOD SPIRITS!

All is well with Kaidence while we wait for a heart. She seems in good spirits and see looks great. Things seems to be holding their own and we are hoping that she will get the gift of the new heart soon. Thanks to the many of you that keep our family in our prayers and thoughts. We are so grateful to you and the sacrifices that are made for our family. Happy Sunday!

PUMP CHANGED OUT!

So, things seemed to move pretty quickly this morning. The clot on the pump seemed to grow a little overnight and so they replaced the old pump with a new one this morning before I made it to the hospital. All went smoothly with that. They also did a dressing change on her wound site this morning and they feel that things are looking better and with some time should be well. During everything else we continue to wait for our pager to go off. Thank You for all of the extra prayers for our little one and our family.

BLOOD CLOT!

I know that everybody wants to see some updated pics of Kaidence. That would be Mike's department. Bug him like crazy. Ryan and everyone at Mike's work this is your mission for tomorrow.

Kaidence has had a good day today. I think that she is getting more teeth because her gums are very swollen. So swollen that one tooth is completely covered by swollen gums. I think that has made her a little uncomfortable. I dressed her in a cute pink dress which had poop all over it within the first hour. They may have to change out the pump to Kaidence's Berlin Heart because of a blood clot. They are afraid that the clot may break off and go to her brain which in turn could cause a stroke. We are hoping that they can get it taken care of fast. They have sent picture's to the team that came out to put in the pump to see what they suggest. We should hear from them soon. I am a little worried that insurance may not cover the new piece for the pump which cost $68,000.00. Ouch....We will do whatever is needed to take care of Kaidence and I would have them change it out this minute if I could. I don't like waiting and taking any chances. Her safety and health comes first no matter what. Other than that things are well. The boys are cute as can be and getting excited for Christmas.

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.

GO BYU!!!

Well, BYU had a good game today. We are hoping that the good luck will continue for us today. And for those of you that are U fans, good game and I sincerely mean that.

Kaidence continues to be very swollen. She wants to sleep all day long. She woke up and played some with the bells that my Aunt Deb bought her yesterday. She seems to really like them. Her WBC was down to 18 and her CRP down as well, so we are happy about that. They seem to be concerned about her sleepiness, but I think that she is so sick and I also think that she is depressed. She can't be held, she can't turn her head with that stupid tube in. Sometimes I think that it makes things worse in stead of better. She acts blah, but if you can convince her to wake up and play she seems to enjoy it. They are talking about taking out the taking out the tube tomorrow. I hope that they will. I think that it will help Kaidence's spirit a great deal.

HAPPY THANKSGIVING!

Happy Thanksgiving! Mike, myself and the boys have had a wonderful Thanksgiving together. We woke up and drove to the hospital to see baby sis on our way to Coalville. It was wonderful to see all of our family and it was fun to spend family time with the boys. They had fun taking the 4 wheelers over to the "farm" to see all of Aunt Karen and Uncle ken's animals and of course the big tractor. Dinner was wonderful as always. Mike and the boys are going up to Ogden to spend the night with all of the cousins. I have stopped by the hospital to spend some time with Kaidence tonight.

Kaidence is very swollen tonight and I hope that they can get that under control soon before we are dealing with wet lungs on top of everything else. She has had a fever again today. Her white blood count only dropped from 22.1 to 21.6 and the CRP 7.2 to 7.1. I think I was hoping for a bigger jump like we had the last few days. The other cannula site is starting to look more infected and I think they will clean that out as well tomorrow. I am praying that we can get this infection cleared fast and that nothing else is affected by it. We can't re-list Kaidence until her wounds are healed which could be a couple of weeks. Not sure though because I have not spoken with Doctor Everritt for a couple of days and we are not totally sure what her thoughts are. We had hoped to speak with her before Thanksgiving so we could at least know what the plan was and what we were looking at so that we didn't have to wonder and worry all weekend. The little glimmer of hope that we could possibly all be home together for Christmas is gone so we will find a way to make due.

We have so much to be grateful for and I could probably write a whole blog on this topic. However, we are so Thankful for the wonderful support of all of you. We honestly could not due it without all that you do. Thank You for following the blog and caring for us. We are grateful to the many nurses and doctors that take so much time caring for Kaidence. We know that they honestly do the best they can and that they want what is best for our little one. Of course, we are so grateful for the gospel and the unconditional love of our Father In Heaven. I have seen more families here turn back to the gospel after their kids have become ill than one would ever imagine. Trials can teach us so much, but only if we let them.

Happy Thanksgiving and we love you all. Savor this time of year and hold your loved ones close. Spend more meaningful time with your family then ever before and get back to basics. In the BIG picture it is all that matters.

INFECTION !

Well Kaidence's infection site is worse than I think we all originally thought. The surgeon and the team came in this afternoon and cleaned out everything. This is not good for Kaidence and she is in a very serious situation according to the surgeon. We knew that infection would be a possibility but that it was also the one thing that would be most dangerous for her.The good thing is that the doctors started her on antibiotics days ago when her WBC started to rise. I think that has slown down the infection so we are hoping that it is not in her blood or traveling up the cannula and into the heart. Her WBC was actually down from this morning as well as her CRP. She is on several heavy duty antibiotics and they will fight the infection with everything that they can. She will have the infection site scrubbed with antibiotics daily. This is very painful for Kaidence so they intibated her again so they can give her heavy sedation for the cleaning everyday. That means she can no longer cry and that I can no longer hold her.

Once again, Please pray for little Kaidence!!!!

HIGH WHITE BLOOD CELLS!

Today Kaidence still looks pretty darn tired. She woke up a little and played. I even got her to smile a lot. I have rocked her most of the afternoon and she seems to rest well. Her white blood cells continue to be elevated and we worry about that (I have to always have something to worry about). The site where one of her cannula's enters her skin looks not so great. The surgeon will take her in and clean it all out and get rid of any infected skin if there is any. The team that does the dressing changes does a great job and I know that they are always very careful to keep things very sterile for Kaidence. The surgeon will take any dead skin from the site and see if anything grows out from it. She is on a lot of antibiotics so we will see if things start to get better.

BEEN SICK!

Sorry that I haven't posted in a little while. I have been sick with a nasty sinus infection and croupy cough. I think I got it from my beautiful boys. I slept about 24 hours strait and am on some antibiotics. I feel so much better than I did 24 hours ago. Thank You to those that have brought food to our family. I know that it is a sacrifice and that you have been taking care of our family for a very long time. We hope that you know how grateful we are and how helpful it is for our family. We have a wonderful ward family and we are so thankful to have you in our lives. Your support is amazing.

Kaidednce looks very tired today. She has pretty much played non stop since she was extubated the other day and I think it has finally caught up to her. Yesterday she had a fever and her white count was up as well as her CRP. All cultures are once again negative so they ordered a CT scan of her brain, chest, and abdomen. Everything looks ok on that. I haven't held Kaidence for a few days because I don't want to get her sick and I think that she really needs to get some good sleep. I might have to turn off the Christmas lights earlier. She stays awake just looking at them. Her Christmas music has a great effect on her blood pressure as well. My family is all going to dinner tonight to get caught up on all of our Birthday Dinners that have not been celebrated due to our busy life. We hope that all of you are doing well.

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.

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

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

~

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.

~

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.

~

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

SURGERY MOVED TO WEDNESDAY!

Well, I have always told ya'll that things here change minute by minute. It turns out that the surgery for Kaidence has been moved to Wednesday. The hospital is too afraid that the equipment will not be here and set up in enough time Tuesday to feel comfortable with everything. The hospital has to get all of their lawyers to sign paperwork before the equipment can be shipped from Berlin. The company that does the Berlin Heart is awaiting a blood test of Kaidence's - if the test comes back positive we may not be able to get the heart. However, they all feel pretty confident that all will be well with the test. So that is the latest. They are giving her more blood and getting ready to do another echo. I hope I can make it this next week. I miss being together with my family. I miss Mike and my boys.

SPECIAL FAST ON SUNDAY!

Kaidence has a big week coming up and we will be having a special fast on Sunday for KAIDENCE and her DOCTORS. If you would be willing to once again help us out we would be forever grateful. The power that comes from prayer and fasting is beyond anything else that we can do.

Well Kaidence had a pretty good night and she looks much better now that she has been given more blood. She is awake at the moment and watching Clifford on TV. She gave me a cute little grin this morning. Things still look as though Tuesday is the big day for the Berlin Heart. I am scared and excited at the same time. I have felt that things would go well with it, but am having hesitations after Ian's passing yesterday. Everybody here seems pretty excited about the whole things and are keeping busy in meetings preparing for it. The team is flying in on Monday to do a practice run and set everything up. We should get more information then. They don't have statistics to give us because everything has a confidentiality block because they continue trying to get the FDA to approve it. It's a legal thing. We will keep updates coming on the blog. Thank You for all of your love.

LITTLE IAN RETURNED TO HEAVENLY FATHER!

Today was a sad day for our PICU family as Little Ian passed away. My heart is sad for his family. Ian was a tough little guy and fought an amazing fight. He touched our hearts and I will never forget him nor his family. I will miss my PICU neighbors and our many late night visits. These people are the few that can truly relate to our emotions. I will miss Emily, Ian's little sister who would come to our room and go right over to my treat closet. I will always think of her when I eat my Oreo's. I am happy for Ian as I am sure he is sitting upon our Father In Heaven's lap with a great big smile upon his face. We love you Ian and family. Little Kaidence will miss her little buddy.

Happy Halloween!

Happy Halloween everyone! We think Kaidence looks Sooo cute in her Fariy costume. The Hospital is so nice they have trick or treating on every floor and every department. The boys got so much candy that Camden couldn't even carry his treat bag. They had a blast but we done after an hour and a half or treating. The hospital is so fun alot of the staff dresses up in costumes and makes it fun for those kids that are here or the ones that or visisting those here. It makes you feel almost normal on a holiday like this.

There is also more news on Kaidences condition. Her heart rate has finally dropped. It has been at 214 for most the morning and her temp was high. It was a big worry for a while. They had to sedate her more and use a cold liquid blanket under her to help drop her temp. Our nurse Katie has worked wonders today and has Kaidence heart rate around 130 which is much more acceptable. Kaidence looks more comfortable today and more restful, if a bit pale though.

Kaidence's doctor came by and explained that they are ready to do the Berlin Heart next tuesday. We are having all the blood work done now to get ready. The will do some test runs and workshops on Monday to make sure they are good for Tuesday. They will do the Berlin Heart if she is in the same condition as she is today. So we are pretty darn sure she will be having the first Berlin Heart in Primary's on Tuesday. So pray that she gets better or that the Berlin Heart is a big success.

KAIDENCE'S LITTLE FRIEND IAN!!!

Please keep our little friend Ian in your prayers. He is Kaidence's little friend and neighbor here in the PICU and they have been here for a long time as well. They have run into some complications and need some extra prayers tonight. I will put his blog link on Kaidence's page under heart buddies. We Love You all!!!!!

A LITTLE RAY OF SUNSHINE FOR OUR SUNSHINE!!!!

Well, Mike was a little sneaky snake with that last Birthday post. That is why he kept asking me to update Kaidence's blog.

Mike covered most of the day in the last blog. We did get some good news this afternoon. Dr. Everritt came in today and told us that the hospital feels that they are ready to take a step forward and have given permission to do the "Berlin Heart" here at Primary's if Kaidence needs it. What a blessing, we don't have to move. She and I were both shocked at how fast the hospital directors, surgeons and staff all gave the OK. She said that the "stars all aligned today and that everything fell into place". Surgeons have been on the phone today calling other surgeons to discuss protocol and everything else. However, the nursing staff has only had training on the device by working on a cow. Not too sure how I feel about that, but the Lord will provide what is needed if that is what he wants for Kaidence. Dr. Everritt said that whether or not Kaidence needs the Berlin Heart that she will have impacted so many lives because she has made it so Primary's has committed to the program, and given the funding to purchase all of the equipment needed to do the surgery and care for her after. They now will be able to give hundreds of children a better chance at life. The hospital is starting to order all of the fancy equipment today so that if Kaidence needs it we can do the surgery next week. After everything is set up next week the team can be here in 24 hours after being notified to provided support for the surgery and nursing. This is such a big step for this hospital and a blessing to all of the families in the region that Primary's provides care for. I can't help but think that maybe this is why Kaidence is going through what she is. Because of her condition and her serious need for more options to save her life, people have looked outside of the box and this will save the lives of many children for years to come. It gives me some peace knowing that some good has come from this. Good that will bless the lives of so many whether or not Kaidence knows it. Thank You for the prayers. They HAVE made a difference!

Still Waiting and we have a Birthday today.

Happy Birthday Shauntelle. Wow 29 years old. Your the best Mom, Wife, and inspiration. I Love You.
-Mike

Our little Kaidence is still hanging in there. She has had a fever on and off all day today. It's gotten up to 102 today. She has also thrown up a couple of time today. So she is having a little bit of an off day. She also had another blow out. This one was so bad that even the nursing staff was impressed with the quantity. Overflowing the diaper and everywhere. She needed new bedding and a bath and a lot of room freshener. When she does something she does it big.

The social worker also came in and is bringing the list for heart transplants in our region. Primary's and Kaidence is on the top of the list for a heart in her age group and blood type. We keep our fingers crossed and hoping that today is the day. They have talked more about the Berlin Heart and the decision is still out on if Primary's is going to try the process. They are also worried on timing. We will try to be patient. We are told that the waiting is the hardest part.

Thank you all for all the prayers and comments. We love you all and want you all we are thankful for you.

PLEASE KEEP PRAYING!

Well I thought that Kaidence was holding stable but apparently I was lacking some information that the nurse never passed on last night like the fever and the more frequent extra heart beats. Dr. Everritt came in today and discussed some concerns regarding changes in Kaidence over the last 24 hours. She is trying to get a game plan together in case Kaidence continues the path she has apparently started. We discussed ECMO (heart & lung bypass machine). We halso discussed the "Berlin Heart" (left ventricular assist device). This would serve as a bridge to heart transplant. However, Primary Children's Medical Center has never performed the surgery or cared for a baby with this device so the hospital has to decided if they are ready to take that step. They would have a team of surgeons that would fly in to help perform the operation. If Kaidence does need this device to buy her time until she gets a heart and PCMC won't do it we will have to pack up our little family and move away. Time is running out and we need a heart! And we need it soon. Unfortunately that is what it comes down to. Please pray that what is meant for Kaidence can be. We are watching all of her cultures and her fever that continues off and on. She can't get an infection because if we do and she gets a heart offer, we won't be able to take it. I feel so overwhelmed. Life continues, sometimes I wish the world could slow down so I could get caught up.

LOTS OF LITTLE THINGS!

Kaidence has added a new dimension to the pooping - throwing up. Kaidence started throwing up last night after the respiratory therapist came in and "bagged and suctioned" her. With her being intabated and not moving around like you and I would she needs help to move the normal secretions in her body and so they do this at least every 4 hours. Not her favorite thing. She has thrown up old blood most likely from irritation the tube she has going down her throat has caused. She continues to throw up whenever she is suctioned however it appears to be extra mucous and I think it may be collecting on the back of her throat and triggering the gag reflex. Kaidence's skin has started having some problems as well. She seems very sensitive to the probe leads they placed on her chest. She has a pretty big blister from one of them. The skin under her chin and around her neck looks very irritated. She has started getting welts with the skin protector they put on her around that new central line they placed. It looks pretty nasty so they have sent cultures. The other night she spiked a fever so they sent more cultures and placed her on an antibiotic just in case the cultures do start to grow something. However, the cultures have not grown in 24 hours and all continue to be negative. Her blood pressure last night dipped a little lower then it should so they had to up some of her BP medications. They have messed with her meds a lot this last week and it will take her some time to get used to things again. Her Kidneys are acting like they want more blood flow to them and so they will give her more blood this evening if the numbers are still high. The problem with more blood is that the more blood she is given from different people the more likely she will reject a heart because she has been exposed to so many different antibodies. Her chest x-ray today looked much better, so we are making some progress. On the bright side she has been much more awake and interactive since the first time she threw up. We will take what we can get.

The boys came up this morning to go to church and see baby sis. They sat next to her in her crib and McCaden was able to cuddle her for a minute which he needed. Camden sat next to her but was too scared to cuddle her so he kissed her leg. I am so proud of my boys and how well they are handling everything. I know that they miss all of us being together but this too will pass - I hope. kaidence is awake again so I am going to give her some love.

KAIDENCE CONTINUES TO POOP & SLEEP ALL DAY LONG!

Kaidence continues to sleep and poop all day long and when I say poop, I am not kidding. I am amazed at what a mess such a little thing can make.The Cardiology team and Medical team met together today to discuss a game plan for Kaidence. Not much has changed but at least everybody is on the same page at last. As I said Kaidence sleeps a lot however, I know that she knows I am their. As she sleeps she has started grabbing my finger and holding on very tight. I feel bad when I have to leave and pry her fingers away from mine. She hold so tight that my finger turns purple and her fingers turn white.
I want you all to know how much I love reading your messages. Their is a feeling that comes with knowing that we have so many people that are checking in on our family. It is a sense of love, peace and security. I love having the blog because it can reach everyone no matter where they are.
We know that whatever happens we have all of you that will be standing by us. We cannot ask for more support than what all of you have given to our little family as well as our extended family. We love all of you!
I am so thankful for the gospel in my life. I am so thankful that Mike and I have been blessed with an eternal family. The blessings of temple marriage will keep our family together forever. The Lord wants us to love our family with everything that we are. He gave us our families because he loves us and he would never say that death is the end of these beautiful relationships. That is why he provided a way for us to all live together again.

Today Kaidence had her echo. Her EF (function) went from 9% to 15% and one other part of the echo looked slightly better as well. I know that Cardiology won't be as excited as I am and they will say that she still needs a heart and that is fine but they are also the ones that told me that her function would never get better. I even asked when she was first admitted this last time to PICU if it could make it make it back up to 15% which is what we took her home on after she was first diagnosed - they told me a firm NO. They said that it would never happen. So we have gone from 3%-15% which I think is great. At least it is a step in the right direction. I look at this as another miracle which is the same term that the Dr's said that it would take to get her function back to 15%. We have once again been blessed.

I am going home today and I am very excited to see Mike and my boys. Kaidence is doing well and sleeping a great deal today. The Dr's think that she looks good and they will continue to ween her from meds.

Today has been a relaxing day. Kaidence played a little today and we gave her a pretty good scrub down. I even put her in some of her PJ's from home, it took some time to get them around everything but we did it. The boys are doing well and I miss being a mom to them. Maybe tomorrow I can sneak away for a while. I would love to shower in my very own shower. I still feel major anxiety whenever I think about the transplant. We are waiting and I am still having faith in my miracle and the blessings that see has been given. I see little improvements in Kaidence everyday but I don't know that it means as much to the Dr's as it does to myself. I continue to feel that the longer I am here and try to advocate for Kaidence the more crazy they think that I am. I am so tired of people telling me that Kaidence will never get better. Why can't they understand that miracles do happen and she could be one of them if it is the will of the Lord. They tell me this daily and the more they tell me the more my faith increases in miracles. I won't let them tear down my beliefs.

TENSE TIMES

I have to make this fast because it is midnight and I took my melatonin and it's starting to work. We had some family come and visit today and that is always great to see a familiar face in this place.
So tonight I took the boys to our wards Halloween Carnival while Mike stayed at the hospital with kaidence. We switched and I came back to PCMC around 8:15. They decided to place a line from Kaidence's neck into her heart to deliver medications this evening. Well things did not go so well. They were able to thread the wire but then it suddenly stopped and when they tried to pull back it was stuck. Things started getting crazy fast. Her room had many people in it very quickly and I suddenly ended up out in the hall as they paged Dr.'s down to her room. The wire was stuck and they said that if it was stuck in the heart (which is where the wire was supposed to go) that we could be in some serious trouble. While the Dr. held pressure on Kaidence's neck they order blood and an x-ray STAT. They told me I may need to call Mike if the x-ray did not look ok. A radiologist came up and we were able to see what had happened. While placing the line the wire folded itself in half so it was catching as they would pull back. Needless to say after some time and some pretty unsure moments from everybody everything turned out great. The whole time Kaidence held her own with her blood pressure and heart rate. Everything is fine but I was pretty stressed when it it was happeneing and afraidthat this was it. I am so thankul as I go to bed tonight that the Lord has watched over my sweet kaidence once again. Thank You all for all of your prayers.

Another morning has come. Today Kaidence is pretty sleepy after her fun playful day. They are going to start weening her off some of the narcotics. Her cardiologist came in last evening and said that she does not want Kaidence to be on all of the narcotics that she has been on. She feels that it is important that she interact with her family daily. So slowly they will take her off.
Today around 2:00-3:00 they are taking her in to have another pic line placed but this time in her thigh. The lines that she has going into her groin have started to leak and they need to pull them before infection takes place. Hopefully all will go well with that. Thank You to everyone who is keeping us in our prayers and helping our family out with meals. We are still holding out for a miracle either way. We are trying our best daily.

Happy 8 Month Birthday Kaidence!!!!!

Apparently the doctors forgot to tell Kaidence just how sick she really is. Kaidence woke up this morning wanting to play with her mommy. I even got another smile despite the tubes and tape that is all over her mouth. Needless to say they aren't pleased with her level of activity. The medical team wants her to be completely still, but Kaidence has another idea. I am just glad to see that she still has some fight in her. They have given her multiple doses of heavy duty narcotics the past 3 hours but she is having none of it. I can honestly say I have not seen her this active and playful in about 13 days. She looks so great. Like a normal baby and the crazy thing about it is that while she is pulling her legs to her chest and crabbing and shaking her toys like crazy - She is NOT sweating!!!!!!!!!!!!!!!!!!!!!!!!

Can you believe it has been exactly 1 year today since my grandma, Kaidence name sake has passed away? I have missed her so much but at the same time I am glad that she is where she can watch over Kaidence and give her some comfort. Some days I think that she may be the only visitor that Kaidence knows is there. It is also Kaidence's 8 month birthday today. Happy 8 month Birthday Sis!!! WE LOVE YOU!!!

NEW ROOM

OK so we finally got our old room back from our last trip. Room #12. I am so excited. This has been a lucky room for us in the past and best of all - it's private. They thought they would move her since she would be here a while and the fact that she would be less likely to get sick in a private room. I wanted to let everyone know. So the last two digits of her phone number have changed to 12.

MORNING UPDATE

I am giving an update this morning because everybody usually logs in first thing in the morning and at night right before they go to bed. Things are still the same, just waiting. Kaidence had a pretty good night. They are giving her another blood transfuion today to boost her red blood cells. She is still sedated but resting well. We will continue to hold tight.

HAPPY BIRTHDAY MIKE!!!

First of all today is Mikes Birthday. Happy Birthday Mike. I love you so much and am so gratefule that I have you holding my hand as we climb this overwheling mountain that is before us. . . You are the BEST. I Love You!!!!

We went to McCaden's Primary program and he did a wonderful job. I am so proud of how much he has grown. Camden and I played "puppy dogs" while I was home. That seemed to keep him pretty happy. Not to mention his dad's birthday cake.

Kaidence has slept all day long. She also finally had a big poop. Yes, we get excited about the little things these days. Her heart does not tolerate her being moved and her blood pressure and heart rate struggle. My Aunt Deb sent me a wonderful talk about "waiting on the Lord." The following stood out to me.

"We must be content and peaceful about the spiritual nudgings we may receive and be grateful for those occasional illuminating moments of brighter light and clear understanding."

We recognize those many moments that we have had these last few months. We have witnessed the "occasional illuminating moments of brighter light" and we know with time we will gain a clear understanding. We are grateful for our many blessings.

MY HEART IS SAD

My heart breaks for those many families that I have witnessed lose their little ones. It has been sad to get to know these families and then watch them as their children are passing away. These families that have been here for a long time have been our only consistency in this place. You see them day after day and start to be each others Cheer Leaders. Little Luke passed away this evening. The 3rd baby in 1.5 weeks. What a tough little guy he was and I am so sorry for his family. That is what is so hard, you sit aside and watch this and are so helpless. All I can do is say I am sorry. All have had our same belief that Families ARE Together Forever and that brings great peace to all. I am so sorry for Luke's family, please keep them in your prayers.

I just got to the hospital today. I had some things that I needed to do with the boys this morning. All morning I have been so on edge and have felt very unsettled. I feel so much better as I sit by Kaidence's bedside. I already miss my family. If this is at all possible the PICU feels calm and peaqceful at this moment. I am not sure what it is. It is almost cozy.

Kaidence has been given an IV drip that will keep her paralyzed for now. She has been a little to happy and playful for them today and they are afraid she will wear out her heart if she keeps it up. I am sad that I wasn't here today while she was awake and playing but that is OK. We are still playing the waiting game and we continue to ask you all to keep Kaidence in your prayers and if you don't mind keeping our whole family in your prayers. We would be so grateful.

STILL HOLDING ON

Kaidence is a remarkable little girl. Her echo looked about the same which to us is at least better then worse and her left lung actually has a little air in it today. The cardiologist all think that Kaidence looks very good. They are pleased with her improvement and the fact that she is still holding her own. Their has been talk by those in charge that this weekend or the beginning of the week is a very good possibility to get a new heart. They say that it just seems that things tend to work that way on the weekends. We will have to see what the Lord has in store for her. It does make me anxious. Mike's birthday is on Sunday, maybe he will get a very special gift.

Thank you for the messages that are being left on the blog. I love to read them and they give me peace, hope and I know that we have so many people in this with us. WE love you all!

Last night at 3:30 am Mike was sweet enough to pack up the kids in the snow and come pick me up at the hospital. I was exhausted and decided to leave Kaidence on her own. That's right, I slept in my own bed.

Not much has happened today. I can't decide if that is good or bad. We have been very blessed by others. We received a phone call today from church headquarters. President Monson was asking if we would allow him to come and give Kaidence a blessing. WE of course said that would be wonderful. He has had an emergency come up so he is sending Elder Child and we are so very thankful for their love and concern. She has had many beautiful blessings and we are still praying for a miracle. Thank You to everyone for all of your prayers and support, even those of you that we do not know. Thank You.

Tomorrow Kaidence has an echo scheduled for the morning. We will keep our fingers crossed.

Well today has been pretty quiet for us. Kaidence had a rough late night last evening. She is getting some bad effects from all of the narcotics that they have her on. Sometime she will just thrash around in her bed. In just a couple of hours she has worn an open sore on her fist from trying to rub and itch her nose. I am starting to come to grip with the thought that Kaidence may be getting a heart from another person. They tell me to keep my fingers crossed, but I can't wish for someone to die just so Kaidence can get their heart. It just seems wrong and I have had a hard time coming to terms with that. I am starting to understand that whoever's heart she does get would be passing away anyhow and I am only hoping that the family will give the gift of donation. This place is pretty sad at times and it is hard to watch as kids pass away here but without fail you can always feel the spirit so strong when it is happening. It is also such a blessing to see all of the many miracles that take place daily as well.

We keep waiting for our pager to sound and hope that when it does we can be ready and be at peace with the choices that we have made for Kaidence. From here on out it is all in the Lord's hands.

MY FIRST TOOTH

Finally, after 3 months in the making, Kaidence got her first tooth. I haven't thought to check in the last couple days of craziness so I checked late tonight. I knew that I had to call Mike but I also knew that I would wake him up in a panic thinking that this was "the call". At least she tolerated the painful process very well with all of the sedation.

WHAT'S IN A NAME

This is an email that I received today and I thought that it was fitting for Kaidence.

Miracles only happen to those who believe, to everyone else it's justpure luck or coincedence. Kaidence's name reminds me of the songs the military troops sing when they march to help them keep the marching rythym.
I hope that Kaidence's name will bring her a perfect heart that keeps rythym and doesn't miss a beat. She is a soldier fighting a difficult battle. Hang in there, I'll be here for you if you need me.

IT'S OFFICIAL - KAIDENCE IS LISTED

So just as I hit send to post the last blog the transplant coordinator walked in and asked if we would give permission to list her. I wasn't sure what to say. We have to give Kaidence every chance at life possible so after a moment of shock we said to list her. She has just been listed and they are bringing us our pager, determining the size of heart she can have. They say that she can take up to a 2 year old sized heart, which to a mom who has a boy that just barely turned 3 years old- I once again have mixed emotions. She is highest priority and at the very top of the transplant list. I don't know if I should cry, throw up or be relieved. I just hope that we made the right decision.

MIXED EMOTIONS

Well today Kaidence looks better then she did a couple of days ago. Last night despite all the sedation she smiled at me and played with her favorite spoon that her big brother Camden packed for her. She has been awake much more today. They keep her hands restrained so she cant pull at her intibation tubes. They continue the sedation to keep her heart from working to much. She did watch Baby Einstein today. She stares at the ceiling alot I have a feeling that she has had some visitors. We are waiting to hear official word any minute that she has been listed for a heart, but have not received the pager. I am very anxious today. I still feel so strong that the blessing that was given to Kaidence can still come to pass if it truly is the Lords will and what a miracle it would be. I think that is why I am so nervous. I want to get a new heart soon if that is what is meant for her but at the same time I am afraid that things will move too quickly and that she won't have time to get better. Sounds funny I know because if she was meant to have that miracle of her heart returning to normal function I know that the Lord could do that instantaneously. The doctors most likely think that I am a nut job because they know that I am not giving up on her getting better until I have too and they only look at everything from a medical standpoint, but that's ok and it's their job. Either way we will be blessed because Heavenly Father loves us and has his hands in all things. We have been told that we need to be Faithful for blessings to come to pass and we are trying. The Red Sea was not parted while people stood on the shores. They had to get in and get their feet wet for the miracle to come to pass. Our families feet are wet and we are walking. I just have to keep the faith that the Lord won't let me drown.

Another Miracle

Yesterday, Sunday October 14th, 2007 was a crazy day. I decided that I would take a step and leave the hospital for the night while my mom stayed with Kaidence. My boys needed me and I needed them. I have been trying since August to bear my testimony in our ward and I felt that I needed to do this before things with Kaidence got better. It is sometimes easier to say that you know that Father in Heaven loves you and that he has his hands in all things and talk about beautiful miracles when everything in your life is happy and peachy. I felt that I needed to share with my ward that I still knew these things to be so true even when I am going through a major nightmare and trial. So of course, Mike calls me at home that morning crying and telling me the Doctors news. It was not good. We were told that the medication that they put Kaidence on to help improve the blood pressure in the lungs worked so well that it was making Kaidence's heart bigger and sicker. They told us that her heart was so big that it had collapsed her left lung completely. They told us they they needed to take her off of the lung medication which was the medication that was giving us a shot of getting her on the transplant list. They told us that Kaidence was critical and could go into cardiac arrest at any moment and that chest compressions would damage her heart beyond recovery. They asked for us to give permission for Kaidence to go on ECMO (life support) if that were to happen. They would then give Kaidence 1 week on ECMO and if we did not see any improvment we would then have to take her off to die. They decided to take her in to an emergency Cath test to see if by any small chance that her lung pressure looked better. The risk of the procedure were much higher due to her critical state. WE got a miracle. Kaidence handled the procedure perfectly and her numbers are good enough to get her listed for a heart transplant. The doctors all seemed surprised. WE now had another option.

Kaidence has been kept sedated to keep her heart from working too hard. And she is also on a ventilator to help her breath. They are trying to take stress off her heart. We get to see her beautiful eyes every so often. She is such a fighter and we will keep the faith. I still know that it would take a big miracle for her heart to repair itself, but I know that if that is a miracle that is meant for Kaidence that it will happen and if a new heart is meant for her we will also be grateful for that miracle. I know what she was blessed with and I won't give up on that until her chest is opened and a new heart is given to her. And if that happens we will forever be thankful for the beautiful gift that someone has given us. The gift of life.