TIRED!

So I will try to make this fast because I am not sure that my eyes will stay open. WE made it to our room at about 3AM and got to lay down at about 4AM. Why must the ER always take FOREVER? The funny thing is that pretty much everyone knows and has had Kaidence as a patient at some point or another. In fact, Cardiology had called into the ER and told them what needed to be done but I guess that they just wanted us to hang out with them a little longer. Anyhow, Kaidence has vomited off and on but this afternoon has really seemed to keep down what she drinks. She threw the biggest fit ever when we got to the room this morning. So, I was a litter flustered trying to quickly pack everything and forgot her sippy cup. I thought "no big deal" she wasn't eating anyhow and I would just have Mike bring it in the morning. With Kaidence's weak suck she will only take certain sippy cups and the hospital does not carry them . I had also realized that I left her G-Tube extension at home and that without it I had no way to give her meds or feed her. So of course, Kaidence decides she needs to eat NOW and I had no way to feed her. She kept signing milk and we finally had to give her a bottle with a different nipple on the end. Well, I was glad to see that she had some spunk in her and Mike did bring her cup up today, so all is well.

The Diarrhea is pretty bad and she seems to be starting to struggle with some respiratory issues. She is coughing more often today. They are testing everything possible and are starting to look into parasites. They came and wanted to know if we had been travelling out of the country. HA HA HA!!!!! Seriously, when would we find the time to do that? At least they are trying to figure it out and we appreciate that, but I still think some of this if not a great deal has to do with her meds. We will wait and see what happens tomorrow! Thanks and have a great night.

CAN I SCREAM?

Well, let's just say that this week has been ummm......CRAZY! Despite all of my efforts to make my baby better she still continues to puke and poop. She is quickly loosing all of the weight that we worked so hard to gain and she is now refusing to eat a t all. She goes in and out of looking ok and then looking terrible. We are being readmitted to the hospital and currently sitting in the ER and Mike is home with the boys. Am I allowed to SCREAM!!!!! I feel stressed with everything in life at the moment and have been really trying hard to get our house cleaned up (currently it is a disaster..seriously). We have been trying to figure out why our house is so dusty and we are not talking your typical dust, it's pretty much black. AS Mike was adding a new vent (because for some reason we have a vent heating and cooling the garage) we learned that apparently all of the ducting has not been sealed and that may be the source. Also when we moved in I found that when the previous owners had the bathroom remodelled that they threw all of the tile grout down the heater duct. Anyhow we have been changing the vents every other week for about a half of a year and let's just say it is always filthy and thick. We are having the ducts and furnace, AC coil cleaned this week with the negative pressure cleaning system and were told that it would be best to have all walls and everything wiped down and cleaned so that when the furnace was cleaned it would not cycle through again. My mom and I spent the day tackling the kitchen and I still have a whole house ahead of me. Keep in mind it was already a mess because Kaidence has been sick for a week. So you can't even walk down the halls and I literally had NO clean clothes to pack for the hospital for myself or Kaidence. I called my sis on the way and she let me borrow some PJ's. However, when I got to the hospital My bag was soaking wet and sticky. I soon learned that my bran new bottle of hairspray didn't have a drop in it so my very few articles of clean clothing are clean no more. Thanks for letting me vent and sorry that it was such a long post. Although we know how blessed we are I think it is normal for us to get frusterated. Yes, this is frustrating. Yes, I hate Kaidence being readmitted. Yes, I hate having her look at me and not understand why I am letting all of these strangers hurt her. It breaks my heart every time. I just have to remember how far we have come and remember that it could always be worse. Thank You for your prayers. Please pray for my little boys that followed their mommy out to the car tonight begging her not to go back to the hospital. Have a Happy Holiday weekend and let's hope that they can figure out what keeps making her so sick! Thanks for all you do.

HOME!

Ok, I only have a minute. Sorry that I have not updated but our Internet was not working. Kaidence came home from the hospital later Tuesday afternoon. Her liver labs started looking better and the vomiting had stopped (until we got in the car to come home). We think that it must be another virus. She is having some skipped beats with her heart and so we brought her home on a heart monitor for 24 hours. We should get the results back early next week, we are keeping our fingers crossed. They finally understand me when I say that her C-PAP mask is not working with her. The hospital tried on every mask that they have and could not find one that worked for Kaidence. The Pulmonary Doc is seeing if he can get "special permission to send her home on High flow Oxygen." Home health says they only send people home on it if they are having Hospice care, so we will see what happens. I think I hope it works out. She would tolerate it better than c-pap.
Kaidence is doing ok. She has the fast poopies but has stopped throwing up. Her appetite is not that great so I will be tube feeding tonight for sure. She had a check up today at her peds office and all looked well. Oh ya, she also ate her first crayon tonight. We were given a gift card to go out to eat and eat so she decided to bite off a piece of the red crayon and then throw it up in the restaurant in front of everyone. Good times!
Thank you for all of your prayers, we love you all!
P.S. I retract make earlier statement about no longer throwing up. It has started just up again as I am blogging this. I love cleaing up throw up and I am getting pretty darn good at it!!!!! Gotta go and clean up!

ANOTHER STAY AT OUR FAVORITE RESORT!

Kaidence is making another over night trip to PCMC. She has been throwing up since Saturday and has had some different heart beats. She has also started to get a fever. I took her to clinic this morning and her lab results showed some concern with her Liver so we will be having some different test run and we will see what happens. Please keep her in your prayers, she has already been through so much, I hate to see her have to go through more. I will be at the hospital trying to read book two of "twilight" I have some catching up to do.

Also, today was a big day for McCaden. He started 1 st grade. I love ya bud!!!

A DAY TO REFLECT!

Today has been a bitter sweet day. I wanted so badly for the "Berlin heart" to do for Christian what it did for Kaidence and I am so heart broken that it could not. I attended Christians funeral services today and they were beautiful. The family did a wonderful job of capturing who their son was and what he meant to so many. I continue to pray for his family and hope to spend some time with them soon. On the front of his program it read "Some people dream of angels, but I have held one in my arms."
I do hope that we can all take the time today to embrace those that we love and be kinder to those around us.

On a happy note, little Grace is getting her new heart today and we wish her family all of the luck we can. Today is the day of their new beginning. Good Luck Baby Grace, we are so happy for you!

WE have finished up all of the filming for the Children's Miracle Network and are very anxious to see the story they do on Kaidence. They have spent so much time and thought capturing our feeling and emotions of Kaidence's Journey. Kaidence is getting to be such a busy little girl. Her bottom is still her mode of transportation but I think she may be thinking about trying to crawl. She has become strong enough to get herself from the laying position to sitting, WAY TO GO!!! Her feeds and eating are improving and she doesn't throw up as much. She is starting to get more of her voice back although it is still pretty soft and she will sometimes just sit and jabber. The boys are getting ready to start school and hopefully this year we can all be together for the holidays. Thank You all for your support and love and for being part of our families "Journey of Faith, Hope and Trust."
I had another heart mommy give this to me and I think it is a great way to sum up our new lives as "heart mommy's". Our trials have not been what we expected and our lives are forver changed but It just reinforces that good can come from everything and that life and trials are all about your attitude, your perspective, your faith and your hopes!!!

WELCOME TO HOLLAND-By Emily Pearl Kingsley
"When you are going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans...The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say, "What do you mean Holland? I signed up for Italy! I'm suppose to be in Italy. All my life I've dreamed of going to Italy." But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you bring to notice that Holland has windmills, Holland has tulips and Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special , lovely things about Holland."

I hope that we can discover life's beauty and blessings as we take our own personal tours of Holland!
With Hope, Faith and Love,
Shauntelle

A BROKEN HEART!

My heart is broken as I write to tell you that our little buddy Christian passed away on Saturday evening. Christian was Kaidence's "Berlin Heart buddy" as he was waiting for a heart transplant and Casie and Scott have become my friends as well. Casie, Scott and family, we are thinking of you. Christian is so lucky to have a mommy and daddy like you. I know that he loves you as dearly as you love him. Please pray for this sweet family as they live life day to day without their sweet little boy.

DOING GREAT!

Sorry it has been so long since my last post. We have been insanely busy the last two weeks. We went to the cabin 2 weeks ago and had a great, relaxing time ( I will post more later) and we are still de-junking our house. We have also been doing some stuff for the National Children's Miracle Network. This post will be quick because we have an appointment today to place the button to Kaidence's g-tube. We were originally going to put her under for it but I hate to have her intubated again for such a quick thing. Kaidence has been doing AWESOME and she looks great. I think that she just may skip the whole crawling ordeal and just start walking. Her last appointment on Thursday went well and we don't have to go back to Cardiology for a whole month. I have NEVER stayed away that long in over a year. We of course will be back for other appointments like another sleep study with her c-pap, but just to know that her heart is doing so well that they feel we can space things out a little more is wonderful. Every time I walk through the hospital doors I count my blessings when I get to leave that same day through them as well.

I never cease to be amazed as to the kindness that comes our families way. To whomever dropped off the two boxes at our home last evening, we sincerely Thank You. I was shocked and overwhelmed at what you left on our porch. It was exactly what we needed and at the timing was perfect. We are so grateful for it and we promise to pay it forward as soon as we can. We know that "where much is given, much is required" and our family has been given so much and we know that we have much that we need to do in return. We will forever be repaying all of the kindness that has been poured upon our little family.