Friday, April 11, 2008

KAIDENCE'S BROKEN HEART = MOMMY'S BROKEN HEART!


This is a picture of Kaidence and her daddy after her procedure. She is still trying to come out of her sedation. Well, I am still feeling pretty down today. I must say that many of our family and friends maybe feel the frustration. I know our parents are struggling with it. Wow, we have worked so hard to keep Kaidence's heart healthy so that it will last a long time. Maybe I was also a little too proud of how perfect her new heart was for her and how flawlessly it has worked for Kaidence. I keep thinking that maybe this would not have happened if I had cancelled her appointment because of her cough. Maybe that was a sign to not do it. I don't know. I know that Kaidence's things in the past have all been part of the Lords plan for Kaidence and that was actually easier to accept than this. I guess I feel that this was just a mistake and that I walked into the hospital with Kaidence in better condition than when we left. Last time Kaidence left fixed and this time we can't fix her. Mommy's want to fix things. Ok, maybe part of me is a little selfish because I hate having one more thing to worry about with Kaidence. It seems that lately we have had a lot of "extra worries" like the ANC, possible cancer.......However, I still know that things could be so much worse and I keep that always in mind. I am praying that I can find some peace in this and that I won't be so mad. I don't like feeling this way. It is icky. I don't like having this anger. WE have come so far without these feeling and I know that it is Satan's way of getting to Mike and I. We won't let him. This little bump can't take precedence over all of our other miracles. That's is what he wants to have happen.


Anyhow, her echo today looked the same. We will keep watching and see what happens. Her next Heart Cath will be right before Christmas. Kaidence's Cardiologist said that the regurgitation will most likely get worse with the more heart cath's that are done. Unfortunately they will need to be done regardless. Hopefully her heart will hold up well with the others and we never have to open her chest again until she needs a new heart. That will be our goal. Her biopsy showed mild rejection, but the doctor thinks it is because she is only on the one immunosuppression until we can get her white count numbers fixed. We will hopefully start her cellecpt medication back up soon. That will help with the rejection. Please keep our family in your prayers, I need that overwhelming feeling of peace that I used to have in the PICU. I don't want to be angry, sad or depressed. We have to much still in our favor and I don't want to waste my precious time with my children and husband on stuff like this. I know that it is ok to be angry, however there comes a point that you have to take it for what it is and move on. Please pray that I can move on sooner than later. Whether this was in the Lords plan or not I know that he will continue to watch over Kaidence and make sure his plan still takes place. Sorry for the long post but it felt good to talk.

14 comments:

Brenda said...

Do you get to come home soon? I am sure that will help if it gets you away from the place. We will pray for you to find peace and also for the doctor that did the damage, I am sure he feels awful. It is a hard situation all around :( Luckily she comes from a stubborn family and has a stubborn streak in her! Call me if you need to talk.

Spencer and Becky Wertz said...

I don't know if this will help any. But when I feel frustrated about things with Whitney and her health or just angry about stuff in general I get some comfort from this scripture... then I do a lot of praying. I hope it helps give you some sense of peace.

John 16:33
These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.

Gourley Family said...

Oh Shauntelle, we will continue to pray for you. I am sorry. It is very hard to not be mad. It is even harder to not blame yourself. There are so many times that Mike blames himself for Ryker's heart problems, and there are times that I blame myself for Lilly's brain abnormalities. But those are the times that we are reminded that Heavenly Father has his hand in all. It is difficult to put everything in his hands and pray that you will have understanding of his will. It is not easy, and a lot of times I fight his will. But then looking back, I thank God for unanswered prayers (if it were not for them, I would be married a couple of times over and my life would not be as it is now). Just know so many of us love and pray for your family and Kaidence is truly a miracle!
Hugs,
Emily and Mike

The Ridgway Family said...

I connected to your blog through another as my little baby Eden was born 6 weeks ago with a variant of HLHS and Down Syndrome. She is still trying to recover in the PICU from her first OHS, but she is really struggling. We are also LDS and live in Mesa, AZ. I have been amazed while reading about your Kaidence. She is adorable and your faith and strength is inspiring to me. It is so difficult and I understand that you fight feelings of anger. We will pray for Kaidence and your family. One thing that gives me comfort is that we know that families are forever and that has never meant more to me than now.
Love, Keisa Ridgway

Denita Skousen said...

I am so sorry for this big set back. I know you and your family have been so positive. I know that you will overcome this HUGE speed bump just like the pass. You have lots of family and friends praying for you and you family on a regular basis.

Debbie said...

Mike and shauntelle, I am so sorry for all of this anxiety you are all going through. I think that it is healthy to vent. You need to let out all of your frustrations so go right ahead and let it all out. I know that our Heavenly Father knows of your concerns and your frustrations. Satan wants to pull you down the Lord will buoy you up and sustain you. You know what a strong spirit she has. And keep in mind all of the beautiful blessings she has had and the prayers that are said in behalf of all of you.
Read your patriarchal blessing. Many time when you read it you will find the answers that you need and be filled with inner peace and comfort. I just wish that we could somehow lift the burden from you and Mike. We continue to offer prayers for all of you. Hang on to the iron rod and stay strong. We Love you, Deb and Larry

Megan said...

I am crying as I write this, I am so sorry that this had to happen to Kaidence, it is just not fair.

I LOVE your faith, though, you are always so strong. I have to tell you the very first time I met you in the PICU and you told me Kaidence's story I realized how sick Kaidence was. Then you told me about a blessing Kaidence had received, and how you believed and had faith in that blessing. I am not going to lie, I thought to myself, how is Kaidence's heart going to work, how will she get better? Well, you stuck to your faith in that blessing and you guys proved a lot of people and odds wrong! You taught me more about faith then you will ever know. In fact YOU were the one that made me realize that even though Livie was so sick, and we didn't know what was going to happen to her, I had to have faith in the Lord. I had been quite lacking, (there just seemed to be too many odds against her) and after I met you I was so amazed by your faith that I wanted to be like you and have that unshakable faith. I had to work at it, but my faith improved, and then so did Livie's health.

I want to thank you for being such a good example to me, for teaching me such a valuable lesson about faith.
I don't understand why this had to happen to Kaidence, but the Lord does have a plan, we don't know what that plan is (which is very frustrating sometimes) but I know the Lord is aware of Kaidence and her amazing family.
You guys are in our prayers.
We love you~
Megan

Seth said...

Hi Shauntell! This is Shannon Hossfield and Seth. Our son Charlie was next to Kaidence back in October. We are in the hospital syrgical unit
pod M3075 right now. Charlie had some fluid in his lungs; nothing too serious. Would you like a visit? Occasionlly I read your blog to see how you are doing.
i'm sorry about your lteast struggles, So Frusterating! We would love to see you guys if you'd like.
i understand you have a lot going on.

Marie said...

Oh Shantelle! I love you. I am so sorry for the anger and frustration that you are feeling at this time. I know that those involved with the cath on Thursday wish that they could go back in time (much like yourself) and change what happened. But like you said, it is another obstacle in the way that will test you, your family, and especially Kaidence and your resolve to overcome. The Lord isn't always the "culprit" of the things that happen, but He is always the light in our lives and the peace in our hearts. You are the best and I do pray that the Spirit will be with you and your family during this time to provide you with the peace and understanding that you need.

Much love, Marie

Jen G. said...

Shauntelle, I'm so sorry to hear this news, but I know the Lord is in charge--nothing happens that surprises Him. It is all according to His will. Just wanted to let you know I still check in on you guys almost daily and always have our heart buddies in my prayers. hang in there. We will down to SL in May--maybe our paths will cross.

Jen
Luke's mom

Denise said...

Telle - Dad and my heart broke into pieces when we heard the results. We have also felt so much anger and frustration that Kaidence's heart was perfect going in and not so perfect now. We agree with you, this wasn't in the plan for Kaidence but somethimes others have to learn things. It's too bad that our sweet little Kaidence has to pay for it along with you. Our prayers are with you more than ever. I can hardly wait to attend the temple Wednesday night, I need this so much. Your names will go on the prayer roll and pray that you will be strengthened and comforted once again. I'm glad you've been able to vent, you need that. We know that you will continue to move forward and again enjoy the simple things in life. We love you all and continue to be amazed at you faith and strength.

Love - Mom and Dad

Rachel said...

Shauntelle,
I am your mom's new VT partner (I just love her). I was also at the YW event you spoke at in Nov. Your little girl's story has touched my heart and I have thought about your family so much. When it was announced in our ward in Dec that Kaidence got her heart, I just cried for joy for you. I just recently found your blog and I am so sorry to hear about this new complication. I just wanted you to know that I am praying for you and for little Kaidence - her sweet little face just makes me smile.

May Heavenly Father continue to bless your family.

Gourley Family said...

Shauntelle,
I just wanted to let you know that Kynslee passed away yesterday. She was at home. She was right next to Ryker in the area he was before he had his heart surgery. Anyways, just letting you know.
Let us know how things are going if you can!
Hugs,
Emily

Anderson Family said...

Shauntelle we are all getting really worried about little Kaidence and your family. Its not like you to leave is on the egde. I Hope and pray every thing is all right and things are just busy!!

We love you

Melynda and Mariska

and IHH