Things I am noticing.....

So I figure that a quick update is better than no update. Two things that I have noticed over the past week are that Kaidence's appetite is blah to non-existent.  The girl is not eating, even the foods she would always ask for 2nds on.  Her weight I am sure is continuing to drop which then narrows her donor pool;(  I feel terrible because truth is that for so long she has been a great eater and I didn't have to worry any longer about what she ate.  The girl was always hungry.  To be honest she drove me crazy because she always wanted to eat.  So I finally taught her how to make her own ham and cheese sandwich.....her favorite. I haven't paid any attention for a while and I think this problem has been going on a little longer than I thought.  Once cardio let me know that her weight has been trending down, I have kept a watchful eye and seen a HUGE difference in her eating AND drinking.  My gut tells me that tube feeds are right around the corner.  I really don’t want to start that again.

The last thing that I have noticed is that Miss K doesn’t enjoy playing with friends like she did before.  She no longer wants to play, ride her bike, jump, play in her playhouse or do much of anything.  It broke my heart the other day when her two friends came over to play and she told me that she didn't want to play because she was tired and needed a nap.  So not a Kaidence thing to do.  My friend brought the same thing to my attention the other day when K was playing at her house with her little girl.  K told her she needed to go home and nap.  Let me remind you that Kaidence was my youngest child to stop naps!  Kaidence doesn't slow down!

So there you have it.  Nothing exciting going on but just the things that I need to have documented.  Please keep Miss K and her 2 heart friends who are waiting for hearts also in your prayers. Thanks friends for checking in......

Here's The Deal.......

Ok....Here is the deal!  FB is an awesome asset to keep in touch and spread the word on what is happening with Miss K quickly.  The down side is that I never get things documented on my blog and am therefore missing out on a lot of journaling.  Therefore, I am going to TRY using my blog as the MAIN place that updates will be.  Likely I will post that there is a blog update on FB with a link over to this blog.  So, when we get a heart.....this blog will be the place to come.

Like I said so much has happened and nothing documented. For example, In May Miss K graduated preschool.  To think we almost didn’t send her because she was waiting for a heart.  Glad we didn't hold off because that heart ticker in the corner of her blog is still counting up!

We have had a few heart caths since my last post on here.  We have treated some spotty rejection episodes since then.  Gone to the cabin, admitted Kaidence into the hospital for an illness that sent her little body into shock (but she recovered quickly) and other things here and there. 

Kaidence's was scheduled for a heart cath for July 3rd.  It was quickly decided by her cardio that it was much too long to wait.  She felt that K's heart pressures needed to be checked out.  They had been fine all along but regardless we cathed her heart last Tuesday.  What a blessing that we did.  Turns out that Kaidence's hearts pumping pressures are high.  We have since learned that her heart biopsy came back clean and rejection free.  That was news we haven't heard for a very long time.  The only bummer was that with such a clean biopsy it only left one reason for the high pressures....Heart Failure.  K's heart is starting to fail.  We started her in a diuretic to help remove the extra fluid from her body in hopes it will help with the pressures and keep the heart from working too hard. We are also talking about tube feeds again because she is losing weight and no longer being that great eater. We briefly talked about the next steps of care if her heart continues in this direction. 

That same week, just days after the heart cath we received the amazing news that her PRAs (antibodies we have to avoid in a new heart) had gone from 46% to ZERO.....This was never expected because it rarely ever happens to this extent. These are antibodies that have been in K's body since 8/2010 when she went into Severe AMR (antibody rejection) and we spent all that time in the CICU.  For her these antibodies are 'bad guys’ and her body has held onto them ever since.  That is until now.  This is nothing short of a miracle! 

What does this mean for Kaidence?  At first it meant that now ANY heart that matched her blood type could be given to her, opening up the donor pool.  However, after cardio discussed this with others it was decided that we still keep these antibodies on her 'avoid' list for transplant even though she technically no longer has them.  WHY??? Your body has memory cells.  Cardio worries that it could be possible for those memory cells to be triggered by these antibodies if her new donor heart tested positive for them.  Then we could be back to where we were in 2010 and NOBODY wants that. So for now it stinks because it does make it harder to find that perfect match.  However, in the long run it will be a blessing and give Kaidence a better chance and hopefully more time on this next heart with less rejection.  I think in the end we will be glad that things played out the way they have.  

We are amazed that these antibodies are no longer in her body. I was hesitant to post our great news on FB because we have some heart buddies that are also waiting for hearts with antibody issues.  I felt bad having such wonderful news come our way. Then I decided that if I could give anyone HOPE then it was what I should do.  Sometimes things happen that cannot be explained.  In the end the thing we have to remember is that the doctors aren't in charge and we aren’t in charge.  One person is in charge and that is our Heavenly Father.  It's so hard to let go of the control (even though we have never had it).  

So just like I end all these post....We will keep waiting! Some days the wait is easier than others and some days the need for a heart seems more urgent then others.  In that same thought, we have been blessed and we are grateful.  Things could be much worse and for many, it is.  

Thoughts.....

Well friends, it's another Sunday and I am home with Kaidence and Carden today while Mike took the boys. I hate not being at church together as a family. Something I really do miss (most of the time).  So today I sit home and listen to Paul Cardall's music.  My heart has been touched.  Lately (ok maybe the past 5 years) I have had so many thoughts going through my head.  Lately my thoughts seem so random.  One minute it's complete trust that Kaidence will get a new heart and then other days its the complete opposite.  We have now waited over what Cardiology thought the wait would be for a new heart for Kaidence.  I think the more time that passes these negative thoughts creep into my head.  It seems that a natural response to fear is preparing for different scenarios in regards to that fear.   As if we think of every possible thing that could happen from miraculous to devastation we will be prepared when it does happen and then the heartbreak won't be so traumatic.  I know it doesn't work that way but for some reason that is what I do.  Last time we waited for a heart, every night I went to bed I would plan her funeral in my mind.  Don't get me wrong, I was optimistic.  Ask any doctor there, they thought I was TOO optimistic about things.  But I had the right to HOPE and that is what I did.  However, night time has always been completely different.  When it's silent except for the beeping of hospital machines in the background.  My mind would wander. As it does these days. 

Most the time I do well keeping hope and faith in my heart.  I try not to question the "why" of all that is happening.  However, this last Friday we stopped in at the Creative Arts Dance Academy grand Re-opening.  We had been working in the yard all day and were not dressed appropriately (or clean for that matter).  This is were Kaidence takes dance on Wednesday. This is also that Dance Academy that put on the benefit concert for Miss K last December.  Last summer, this dance studio burn down.  I was so touched that they would do a fundraiser for OUR family when they were trying to rebuild their dance studio.  These are amazing people.  The new studio is beautiful, elegant and the feeling of beauty and peace within in the walls is marvelous.  I know it may sound funny talking this way about a dance studio but it is what it is.  The staff and girls are unique.  As Kaidence walked around the new building with her mask on she was greeted by so many sweet friends.  This is a place that has Kaidence written all over it.  I can feel it in my heart every time.  As she danced with some of the girls my heart was full and broken all at the same time.  As these sweet girls took her by her hand and danced with her I couldn't see the smile on her face because of her mask but I could see it in her eyes. At that same time it also seemed obvious to me for the first time in a while that my daughter was sick.  That her skin color looks pale and grey compared to other little girls, that she has a mask on her face, I could see a bump under her shirt from her feeding tube, her neck veins pulsing with each beat of her heart ....I could see that her heart is broken.  I have always been able to envision Kaidence dancing so gracefully as she grows into a young women but this day I questioned if it would ever happen.  From time to time I feel like life slaps me in my face and jolts me back to our reality.  To the places my mind wanders in the quiet of night.
So what do I do?  I try my best to move forward each day with HOPE and a prayer in this mommy's heart.  I try to count EVERY single blessing that we have been given.  I enjoy the time that I have all my kids together under one roof and thank my Heavenly Father for giving me that gift.
I have Faith that if and when the time is right, my little girl will get that new heart!

Chest Pains and a Heart Cath...

First of all I apologize for not updating my blog during this last week. Normally, I keep it updated with things going on but I didn't have time to grab my laptop before I took K to the hospital Friday. I PROMISE that when we get a heart it will be posted here as well as FB!

Kaidence had a blessing back in Sept that talked about the doctors timing be precise! I feel like over the last week we have seen that promise starting to unfold.

Friday Kaidence woke up crying that her chest hurt. This is a first for her. I listened to her heart and it seemed to be beating faster than usual. I called cardiology and took her right in. We looked a little rough since we didn't take the time to get ready for the day but some things you don't mess around with. Kaidence's echo looked the same, her ECG showed lower voltages. Last time the lower voltages were a sign of Kaidence's rejection. They did labs on her, all of which came back within appropriate limits. After the ECG cardio decided to get Kaidence in to the cath lab that same day. Mike wasn't at the hospital yet and he really wanted Kaidence to have a blessing so I went and found Eric one of Kaidence's NP's that took care of her with her first heat. He graciously agreed to come and give her a blessing. It was beautiful. About 4:00pm she was taken into the cath lab. She was so excited to be at the hospital. She was grabbing nurses, hugging their legs saying "I get to stay here with you." She was at peace but I was worried because last time her heart didn't behave so well. However, this time she did great!

A big fear of ours and cardiology was that Kaidence was in rejection and we would have to deactivate her from the transplant list for a few weeks until the rejection cleared. This became a greater concern as we learned how truly sick Kaidence's heart is. She has arteries within the heart that have totally disappeared! Things are looking a little scary in there and Dr. D had a hard time finding any healthy tissue to biopsy. Her heart is that sick!

The results showed that K was NOT in rejection (BIG sigh) but inflamed. If arrhythmia's or chest pains continue, cardio will talk about a pacemaker. However, they seem to think we will have a heart sooner than later and we hope that she can hold out.

We have been blessed with tender Mercies from our Heavenly Father this week. How grateful I am that things happened they way they did this weekend. Although it rocked our boat big time, we were blessed. For the first time in 7 months I knew without a doubt that Kaidence really needed a new heart. Comparing how sick she looked last time to how she looked this time it was hard for me to process that her heart was "that" sick. Monday cardio and I had discussed the possibility that maybe we could wait a little longer to get her a new heart. Waiting until more symptoms pronounced themselves. Of course they would cath her to be sure. The plan was to discuss this more in 5 weeks. Now I was even more torn! However, we are now on the same page, knowing that this little girl needs a new heart SOON. Although I found this frustrating that she looked so good that I could no longer be sure what to do I had to remind myself that my prayers had been answered for Kaidence. When we found out that she needed a new heart I pleaded with the Lord to not let her health and quality of life deteriorate like it did last time. All I wanted was for her to get the chance to live like a healthy little girl and for the most part, that has happened. With dance and preschool twice a week she has kept busy. She loves jumping on the trampoline, riding her bike, swimming and playing.

Friday was the day that I was supposed to take Kaidence to the Kindergarten Orientation........KINDERGARTEN! She was so excited to go but instead we ended up going to the hospital. However, on Saturday as K was wondering her room, guess who walked out of the room next to us.....her kindergarten teacher for next year. She was as shocked to see us as we were to see her. K was excited to see her.

Saturday late afternoon we were discharged form the hospital. From that point on K has not felt well at all. She is fatigued, sick to her stomach and refuses to eat and drink. I haven't used her G-tube in about a year but had to so she would stay hydrated. Vomiting and fast poopies seem to have made the problems worse. We have been in very close contact with cardio. I think our biggest concern is this illness is a result of her heart getting sicker. However, Camden started throwing up last night and Carden has fast poopies too. I feel a little better about things but we will go and see cardio in the morning.

We are taking it easy around here. Dr. E is out of town and Dr. K her surgeon is also out of town. Hoping that everyone gets back and settled before this heart comes.

Easter and Heart Update

I hope that everybody had a terrific Easter this weekend! At last, we made it out of town after cancelling the trip 4 times! We got Camden a waterproof cast for his hand and left. We felt strongly that we just needed to go! Transplant doesn't let you travel too far when waiting for a heart so we went all the way to Logan. My kids were so excited to go out of town that I had to double check and be sure they knew we were taking them to Logan and NOT Lagoon! They swam their little hearts out and I was sure to let Miss K know that this may be the last time she can swim for awhile. She swam until her lips were blue. It felt great to get away for a time, even if it was short lived. Sunday we took some time to walk around the grounds of the Logan temple and take some pics. That added a great spirit to Easter this year!

Things here are holding steady and crazy all at the same time! In fact, everyone is doing well. Friday I get to register Kaidence for Kindergarten (yes, you read that right). I am trying to decide if we go the route of traditional or do I put her in the Chinese Immersion program? I cannot believe how big she is getting.

Today was her monthly cardio appt. Things still look the same. They were kind today and told me they wanted to give me a heads up that Kaidence could get a heart any day now. They have had quit a few heart offers for her this last week. I cannot help but feel the time is coming soon. It makes me sick to my stomach to think about what it means for another family. I fear what could happen to Kaidence as well. The second time around is very risky. Its a very long road and Its hard to process in my heart and head. All I can do is pray that whatever happens will be meant to be for all involved.

Please keep us in your prayers. Prayer for my sweet little boys whom I am sure can sense the tension in the air no matter how normal we try to make life. Prayers that Kaidence may be healthy, happy, peaceful and brave. Prayers that Mike and I can juggle it all. Prayers that we may know what is right and meant for things to come. Prayers that when the time comes I can bravely hand my daughter over to the surgeons with faith. Most of all prayers for whomever will be giving her a new heart and prayers for Devohn's family for the heart that today's beats within her. Above all, prayers for Heavenly Fathers will to be done.

I am now off to try and get things ready for whatever may or may not come our way!

This and That......and some pics

Let me start by introducing the newest members of our house hold.....Chance and Chase! (They came at the right time, together and pretty much potty trained. They are perfect for our home and our situation. These cute little guys are 3 month old Shorkies and they are brothers. They have brought so much joy to my kiddos who have missed Kirby so much. When we do get this new heart, the boys will have these two little guys to keep them busy.
Saturday was a dance recital for Kaidence and she was so excited. Her brothers were at SIBS day up at the hospital but she had a bunch of groupies to support her dance. She danced to Tangled "I See the Light". She did a perfect job and I loved watching my little miracle dance.


On March 2nd we celebrated Devohn's 8th Birthday. For those that don't know, Devohn is Miss K's heart donor. We celebrate every year with a balloon release. This year we sent 8 balloons to heaven for him, one of which was a spider man balloon. My heart was so very tender that day.

Now to the medical stuff....K's cardio appt. Monday was great. It's my understanding that he is making progress on the list. I cannot help but feel that any day now that call will come. I am so terrified. My emotions are so mixed. I hate waiting knowing what has to happen in order for us to get that call. It hurts my heart. I fear for Kaidence's health as well. More this time than the last time. It will be more dangerous this time around. She just looks so happy and healthy....at times it still feels like it's just a bad dream!

Update:
Yay!!!! Kaidence and Carden have had strep throat and fevers!!!! I have to say that having sick kids and knowing any day a heart could come makes me a little CrAzY! This last week, I felt panicked knowing that I had to get them better. Today, at the moment I think things are improving.

So in the time we wait, I pray. Pray with all my heart that what is meant for Kaidence will be. That if she is meant to get another heart, that it will happen. Pray that if another family will be involved in this process that they will be greatly blessed beyond anything that I could ever comprehend. I pray that my family and myself may be prepared for whatever may come our way. I pray that my spirit, my body and my mind will be ready for the roller coaster that is sure to follow regardless of whatever way things go. I pray for Devohn's family, I pray for my daughters life that will be held in the hands of God.

Happy Birthday!!!!

Happy Birthday to my 5 year old miracle! Kaidence, love you more than you'll ever understand. Praying for many more Happy Birthdays for you! Hugs to Devohn's family for giving me ALL 5 of these Birthdays!

Today for your 5th Birthday you wanted/had

1. Your bedroom door decorated and a shiny heart balloon.

2. A cake with dolphins and Ariel.

3. A Sewing machine so you could sew your face masks and do 'team work' as you called it!

4. You got a sewing machine. You also got the Little Mermaid talking hair salon that your mom waited in line for 2 hours on black friday after I had originally bought what I went in for. One day you'll understand...Nanna and Pappa gave you a sewing kit and a case full of makeup (BTW, your lipstick tonight was beautiful and VERY pink).

5. You went to preschool and they celebrated your birthday just like any other kids. You took mini pink cupcakes and apple juice to share with your friends.

6. You had a McDonalds cheeseburger Happy Meal for lunch.

7. I begged you to take a nap because you were a little bit grumpy because you tried waiting up all night for me to decorated your door. Therefore, mom really wanted the nap because I couldn't decorate your door until you were asleep (and I was putting together that salon of yours).

8. Dad stayed home and smoked a yummy beef brisket for your birthday dinner because that was what you asked for.

9. You didn't have to clean your room today but I have a feeling it will take you awhile to do tomorrow.

10. Now you are in bed asleep. Hopefully dreaming about something wonderful.


To my Miss K.....Ohhhh, how I love you and pray (especially today) that you have many more Birthdays to come!

There is another new post below...so just keep reading!