Our Gift of a Miracle, 3 years later!

My Dearest Kaidence,

3 years ago you were sick in a way that mommy and daddy could not kiss and make better. No band aids or medicine could fix your heart. Mommy and daddy tried so hard. As much as we wanted 'your' heart to get better, it just wasn't part of Heavenly Fathers plan for you. Your spirit was strong, patient and graceful as you waited, but your body was tired. I am sure you already understand much more of this than I realize. I have no doubt that in some areas, you are wise beyond your years.
Today marks 3 years from when you were given a second chance to be a little girl. You were given this gift by an amazing family who's hearts had been broken. They did not know you, but they wanted to save the life of another. Sweet girl, they saved your life. I cannot think of a more Christ like act than that. It truly is a miracle that people are so willing to do such a selfless thing. I still cannot talk about it without crying.

Kaidence, your life has a great purpose. Many have prayed for you and I have NO doubt that those prayers were heard. Prayers are not always answered in the way we think they should be, but they will be answered in the Lords way.

My sweet little girl. You are so brave. I know you realize that you have to do hard things. Things that most other little girls, your cousins, friends and your brothers don't have to do. You don't cry about it, you just do it and make the best out of it. You seem to understand that it just part of your life and you do it with grace. You not only amaze your mommy, but those that care for you. Just know that you don't always have to be brave, its ok. I will love you no matter what. I still get scared.

Kaidence, may you always live your life with the spunk and happiness that you do now. May you strive to make the most out of the miracle that you have been blessed with. I hope that joy, faith and gratitude will always fill your heart.

I am proud to be your mommy!

Love You Forever,
Mommy

Update and Wishing you a Happy Thanksgiving!!!

The weather is freezing outside and a big winter storm should be rolling in any minute now. Is my yard ready, are the leaves raked, is the tramp down and the playhouse boarded up???? That would be a BIG FAT NOOOOO! Oh well, at least our Christmas is all up and the shopping pretty much all done! I am just going to cozy down for the day.

Things around here are going well. The boys are doing well in school and their teachers had great things to say about them. We have started a new job system that seems to be working so well, we are on week 4 of success. Its amazing how much more time I have when they do their part in the family. It may not be done to perfection, but its not about that. Kaidence is doing awesome at her job of making her bed and picking up her room.

Kaidence is doing great. She loves being back in primary. Her part for the primary program was "Jesus organized the church." Also, she is giving a talk in primary tomorrow (guess I should be working on that and not the blog). Her next cardiology appointment is the first week of December. This week she is having another lovely sleep study. We are hoping that having the vocal chords healed will help with her sleep apnea problems. We are keeping our fingers crossed that she does well and then we could get rid of the O2 concentrator, air compressor and vent heater. Yeah!!!!! I am sure that will have some affect on our power bill. Next month on the 23rd will be Kaidence's 3 year heart birthday. Wow! We have been incredibly blessed over the years.

Carden has not been the happiest camper the last 2 weeks. Such a gassy tummy. That kid is ready for scout camp, he would be a hit with the boys. I have pulled every possible thing out of my diet to try to make this kid happy. Turns out that I think he is starving. He doesn't cry after I get done feeding him, but he just doesn't seem content long. So I am starting to have to supplement with some formula. This will be good because he is no longer on the growth charts. He is weighing in at 7lbs 5 oz at 8 weeks old. So he has gained about 2 lbs since coming home. Hopefully this will help fatten him up. Since supplementing, he is SO much happier. Hopefully this will be a step in the right direction.

On the 14th of November, Carden DeMont was given a name and a blessing by Mike. The name DeMont comes from my grandpa. He is a man of integrity and great faith. My grandpa stood in the circle during the blessing on what happened to be his 94th Birthday. I am so grateful for the many things that my grandpa taught me in life. His incredible Faith and trust in our Father in Heaven stand out the most to me. This example has blessed me in my life and in dealing with my trials.

We hope that everyone has a wonderful Thanksgiving. Be grateful for the many little things in life. We are thankful for many of you for the countless hours of service that you have given and for the many prayers that you have given for our little Kaidence. This journey would be totally different without you. We are grateful to our Father in Heaven who knows each one of us. He has carried me in days that I felt I could no longer keep going. He knows my needs, He knows my heartache and He knows my joy. He has a plan for each of us. Sometimes the plan is hard to understand and heartbreaking to watch and endure. However, we each have our own journey and He will provide a way for us to accomplish that journey.

Our hearts are full of gratitude for the family that gave to us, so that our kaidence could continue her journey on this earth. Not a single day goes by that my heart does not break for you, but at the same time my heart is so full of gratitude. I am amazed by what yo have given to us. We are so thankful that you are a part of our lives. You are such an incredible part of Kaidence's journey. Because of you her journey continues. We love you and pray that peace may be given to you always, especially in the coming weeks.

Annual Heart Cath Results October 2010

Yesterday went well with Kaidence's heart cath. The cath lab was running a couple of hours behind because of some sick kiddos. We totally understood because I know for a fact that we have bumped others a time or two as well. Just grateful that we weren't the ones needing to be 'fit in'. That's never a good sign. Kaidence did fine with it and only asked for something to drink twice. When it did come time for her cath she knew exactly what she wanted and how she wanted it. She literally danced her way into the cath lab. She danced and did princess twirls until she was standing next to the surgical table. She then asked someone to lift her onto it. She had already told the anesthesiologist that she wanted an IV in her foot, a root beer flavored mask (for the sleepy gas) and that she wanted "bear bear" to have a mask as well. She then proceeded to ask for a PINK oxygen mask, she had to settle for a yellow one. Thankfully she used her big girl manners when requesting it all. She was very polite. Once she was sitting on the table the anesthesiologist handed her the root bear flavored O2 mask. She said "hold on, I need to lay down first". Once she layed herself down, she took the mask and held it to her face until she was to loopy to do so on her own.

Recovery went well and she ate like a horse after. Seriously.......she ate and ate!

Her results came back today. Her pressures are looking a little better. Her AMR is still 'suspicious' but the other areas came back with pretty good grades. We are also waiting for the results of her specific antibody test, those should be back next week. Although we are not where we were before the rejection episode in August, Dr. E seems pleased with the direction we are going. The truth is that things may never get back to how her heart was. However, rejection is something that we want to completely resolve. Its just taking a little more time. With Dr. E feeling that Kaidence is progressing we will discontinue the IVIG (YEAH!!!!!!!!). I am not a big fan of IVIG and the whole process, but glad we have it just in case. Hoping that we NEVER need it again. No IVIG means that tonight she was able to get her flu shot (so happy). We will continue her steroids for one more month and hopefully decrease her prograf range to where it was before she became sick in August. Also we were able to stop her Lasiks (water pill). This means no more accidents while standing in front of the potty. Poor girl would get so upset when she couldn't make it fast enough. That basically sums up the day.

I am grateful that we are making progress, even if its slow. Its such a blessing to be heading in the 'right' direction. Thank you for all the many prayers.

Also, Carden gave me a wonderful birthday gift.......sleeping through the night for the last 3 nights. I must add that I am VERY grateful for that as well.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Kaidence. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Kaidence this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Kaidence a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Kaidence please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Kaidence. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Kaidence's health and in all honesty her life.

Cath Time Again

Well, its that time of year again. Tomorrow Kaidence will have another heart cath. They will be checking the pressures in her heart and also taking some biopsy pieces to check for rejection. She is excited to go, crazy girl. I wish her mommy and daddy were that excited. I was feeling really confident about her progress until a couple of days ago. Hopefully it is nothing more than nerves getting the best of me. Just very worried this go around as to what they will find and her pressures. This stuff never gets easier.

I will post about our latest doings when I have some time. I just wanted to let everyone know about tomorrow. If you are willing, we would appreciate the prayers for Kaidence and her docs tomorrow. I will post when we know results.

A FRIENDLY REQUEST

Yesterday was Carden's due date, but instead he turned 3 weeks old. How time flies (unless its 3AM). For Carden's 2 week appointment he weighed in at a whopping 6lbs even. The kids love their little brother (Still) and Kaidence continues to assist in all diaper changes. The days and nights thing is slowly sorting itself out. The first night I used the "Snuggle Me" that a friend had given me (Thanks Becky) was our best sleep ever. He sleeps so well in it. We use it now every night. If its dirty, washing it is my first priority for the day. Its awesome! How did I survive 3 other children without it?

Today Kaidence and Mike are spending the day up at PCMC for another IVIG treatment. This time they will infuse her over 12 hours instead of the 5 hours in hopes that it will prevent another reaction like last time. Its hard for me to be on the other end of things.....at home.....waiting. However, I don't want to take Carden around all those germs. Kaidence was excited to go as usual. She woke up this morning our conversation went like this:

K: "Mom, I get to go to the hospital today?
Me: "Yes, you get to go today.
K: "Ohhhhh, THANK you mom"

Ok, I thought. I hope she doesn't grow up to be a hypochondriac. By the time she left this morning she had her menu planned for lunch, Chicken Nuggets, baby french fries (AKA hashbrowns) and of course Ketchup.

This Sunday Kaidence gets to go back to primary (the one at church). However, we were told that if anyone has a runny noses to pull her out of class. Ummmmm, at that rate she may never get to go to primary.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Kaidence. That way we can make a decision on wether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Kaidence this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Kaidence a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Kaidence please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Kaidence. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Kaidence's health and in all honesty her life.

That's about it for this end of things. Hope that everyone is doing well and enjoying to cooler weather and beautiful colors of fall.

Life with a New Baby

(Blogger wont let me post pics)
OK, I have 35 minutes till conference starts again to post. Here we go..........
We brought Carden home from the hospital on Friday. He needed to spend some extra time at the hospital being watched because of his low blood sugars. He also had jaundice. I had to laugh a little because they sent in a social worker to speak with me about bringing him home on a Billibed to treat the jaundice. I assured her that I was not going to be traumatized by this and that I could handle it. A billibed was the least of my worries. All my boys have needed one.
Just made me chuckle.

Carden is such a tiny sweetheart. I cannot believe how small he is. His lower arm is as round as my thumb. He is still a great eater. We brought him home just a little over 5 pounds and I am sure that he is gaining. He still doesn’t fit in his newborn clothes. He has his days and nights a little confused. In fact from midnight to 4 AM he doesn’t think that sleep is needed. He doesn’t sit and cry, he just wants to be awake and nurse. He is extremely loved by his brothers and his sister. Kaidence loves to help change his diapers.

Life here keeps moving forward. Thursday Miss K had a cardiology appointment. All still looks the same for her. I have noticed that her heart rate has dropped these past 2 weeks and that makes me feel a little more confident. She was excited to show off he brother. Kaidence's cardiologist looked at Carden and said that she thought he should have an echo. My stomach sank, I was sick. Sometimes it’s easier to just not know. Ignorance is bliss at times. However, I knew that we should do it. Instead of making me wait for weeks and worry they did it that day. He slept through the whole thing and everything with this little guy’s heart looks great. How grateful I am. I cannot help but look at him in amazement. How the Lord knows what our hearts need. I guess McCaden was right. When Kaidence was sick, he prayed for the little brother that would be in mom’s tummy. At that moment in time, everything with K was falling apart. I was sure that Mike and I were DONE having kids. I could not take the chance of more heartbreak. We explained to McCaden that there was NOT a baby in my tummy. He said “I know, but there will be.....a baby boy". I guess that the Lord gave him a glimpse of what was to come. Just as it is with all of our children, we could not imagine our lives without Baby Carden.

Introducing our New Little One.

Welcome to the world Carden DeMont. Weighing in at 5lbs 15oz and a length of 19in. He joined the ranks at 3:3oPM this afternoon. McCaden, Camden, and Kaidence are super excited to have a new baby brother. He has already brought the mother instinct out in our little Kaidence. She insisted everyone use "hanitizer" before touching her brother. Camden wants to hold Carden constantly, McCaden won't let him go, and Kaidence bosses everyone around. It's great.

Things were a little scary for a while. During a routine NST this morning for Shauntelle they found that her fluids were very low. Along with the low fluid the baby's heart rate was low. Low enough they admitted Shauntelle to the hospital and were talking C-Section. They determined that the cord was wrapped around our little ones neck. When Shauntelle would have a contraction it would constrict the cord causing his levels to drop. They watched things for a while then decided that it was safe enough to induce her and watch closely and have the C-Section ready to go if needed. About an hour after they broke Telle's water she went from a 6 to a 10 in under 10 minutes. 6 pushes later and we had our little boy. A crazy morning with tons of stress and now everything feels great. Our little bald Carden is such a sweet addition to our little family.

*Update 9/23/2010*

We are stuck at the hospital a little longer than we wanted. Carden has low blood sugars because he is so tiny. As of yesterday he was 5lbs 8 oz. Such a cute little stinker. He is also being treated for jaundice. He is a GREAT nurser (finally I have a kid that will do it). The docs are surprised at how well he does at eating for his size. So our main concern for him is to get those blood sugar levels up so that he stays out of the NICU. He is so fun to have around. He is very loved by his brothers, sister and parents. We feel so very blessed to have him in our family.