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.

Long Night

Thank You SO much for those that have fasted and prayed for Kaidence today. I had what I call a "Hospital Sunday." Those are Sundays when you feel extremely humbled and the spirit feels so strong..... Regardless of last night serious lack of sleep.

Kaidence's night last night was awful, to say the least. Her headache was severe, nausea and vomiting was literally every 5 minutes. We could night keep any pain reliever in her, within 2 minutes of giving it, it came back up from about 7pm -3 AM. Then the body aches kicked in.

Last night was spent catching throw up, trying to keep her from throwing up, 2 am store run, body aches, ice packs for her head, worry about fast heart rate, trying to find a magic way to run her feeds so she would keep them down, debating on a trip to the ER, sleeping on the floor and so on. The poor little girl would nicely ask each time for her throw up bowl. Around 2:30 Mike gave Kaidence a blessing while I held her in my arms. Before it was over, she was asleep. At that time we decided to give her 30 minutes to try to keep down feeds, if not we were heading to the ER. This is too much with her recent rejection episode. She didn't throw up the rest of the night.

Today she seemed to do ok. She laid around more then usual but seemed ok. Tonight she is getting a fever and her nausea seems to be making a come back. I hope that we can at least keep it in control tonight. She is tired and so are Mike and I.

Once again Thanks to everyone. Last night I found much peace as well knowing that today she was being fasted for. I will keep everyone posted and hopefully this will subside in the next day or two. Love to you all!

We are Fasting for Kaidence Tomorrow

I meant to blog earlier about this, but this week has been AHHHHHHHHHH! However, as of today Super Saturday is DONE!!! Thanks everyone for your help.

Tomorrow we will be having a fast for Kaidence for anyone that would like to join in. I have felt strongly that we needed to do so, but have put it off because I feel guilty asking....yet again. However, I know its power. I don't know exactly why, I just keep getting this feeling that we need to do it. So we will. We do what we can, and the Lord will do the rest according to His will.

Kaidence had her IVIG treatment on Thursday. The treatment itself went well, however this evening she seems to be having some reactions to it. I walked in the door exhausted from today, only to find a sick little Kaidence. She laid on the floor crying (NOT a typical Kaidence thing to do.) She has a terrible headache and started vomiting. Because of the recent rejection I called cardiology. They said its a reaction to the IVIG treatment, they have seen another child react the same way. The headache may become very severe very quickly so we will be giving medication for that around the clock for the next 36-48 hours regardless of symptoms. If the headache cannot be controlled and fluids or meds cannot stay down then she will need to be admitted to the hospital tonight. I am praying that we can all stay home tonight. I am wiped out!

Back to Thursday. Kaidence's heart function looked good again on the echo. However, still nothing has changed in regards to the hearts size and the leaking heart valves. Due to the fact that nothing has improved in the last month, her cardiologist is not sure that it will ever improve any further. This could cause issues down the road, but we will cross that bridge if and when we need to. Hoping that we never need to cross it.

Other than that, Kaidence is doing well. Once her "soldiers" get stronger she wants to go to primary at church and ride the TRAX train. Those are her only 2 request.


The boys seem to like school. McCaden is still full of ALL the energy in the world. He is a good help and is testing his sense of humor out on everyone. Camden turned 6 on Friday and was so excited to bring treats to his class. He is my little sweetheart. He has the cutest grin, he can never get away telling a lie because his face always gives it away with that darn grin of his. He is a great listener, usually only have to tell him once or not at all. He could talk the ear off of anything (like his mommy). Happy Birthday my sweet little man! Mommy Loves you FOREVER!

Thank you all for all of your love, prayers and understanding.

Tomorrow's IVIG Treatment

Tomorrow we will head up to PCMC for Kaidence's IVIG treatment. It will make for a very long day, but we will be prepared for ways to stay busy. She will also have her regular clinic visit. I am hoping that they can still do it. It seems that she has caught Camden's cough and icky nose from last week. Please pray that this treatment will go smoothly and do what it needs to do for Kaidence's heart.

Baby and Cardiology Update

Once again, I meant to post much sooner. Life has been CRAZY! My time seems to barely allow me to do the things I HAVE to do, no time for extras. Blogging is an extra. Between Kaidence and myself we have doctor appointments 3-4 days a week. To tell you the truth, I have had to take some time to deal with my emotions and fears with regards to Kaidence's future. In fact, it took me crying myself to sleep a couple of nights. However, all I can do is my best to care for her, love her and teach her life's lessons.....the rest is out of my hands. What is meant to be, will be. Sometimes that is so hard to deal with and at other times it comes as such a relief.

A quick pregnancy update. I have Non Stress Test 2 times a week for the baby. Fluids have been up and down. However, more time spent being down. Last week I had my last progesterone shot, so we will see what my contractions do. I will be 35 weeks and have made it past the time I delivered McCaden. Hopefully, I can make it at least 2 more weeks. The kids are getting excited, especially Kaidence. So that is the baby update......now for the Miss Kaidence update!

As far as her heart goes, things are still the same. I am a little frustrated that her heart is not recovering quicker. It really hasn't made any improvement since coming home, but it hasn't gotten worse either. I am worried that her heart rate is still high, the vessels in her neck come and go. Her heart is still big and therefore her valves are still leaking. However, her heart is functioning (squeezing) well and so that is a great BLESSING. Cardiology wants to keep Kaidence on her steroids and heavy drug doses longer than originally planned, because her pressures in her heart are so high due to the rejection. It looks like she may be on these for the next couple of months. Longer than originally thought. They are also starting her IVIG treatments next week in hopes that things will start to move along with regards to recovery and treating the antibodies and rejection mor aggressively. So because of these treatments Kaidence is no longer able to get her flu vaccine for this year (scary) and she is very immunosuppressed. We will just have to stay home, keep germs away and hope for the best. Please be understanding if I get a little more freakish about sickies as flu season approaches. Just remember that a virus is what started it all and is the reason she needed a new heart to begin with. So yes, it scares me.

Kaidence is flying high on her steroids. I know most others have the opposite problem with grumpy kiddos on the roids. Kaidence seems to be very hyper on them. As usual they make her hungry and I think she has gained about 3 pounds since being home. Her face is very round and she has a cute little double chin. She seems to think she is the luckiest girl in the world. She is so upbeat and full of herself. She talks non stop and has the funniest little giggle. She misses going to primary on Sundays. I think that is when she is reminded most that her heart needs to get better. She understands the whole germ thing. She has spent time outside painting with her brothers (she loves art stuff right now). She has also spent time in her playhouse. I feel bad because the neighbor kids usually play in it with her, but for now its just for her and her brothers. She also loves to go out and ride her bike. This girl just goes and goes. When I nap, she lays in bed next to me and watches movies. She will spontaneously grab my hand and kiss it or lean forward and kiss me on the cheek while I sleep. She doesn't know that I know she is doing it, she thinks I am still sleeping. Its those moments that I just savor the sweet tender spirit and personality of this little girl.

I am grateful that she IS so happy, crazy and full of life. She is such a sweetheart.


Our hope is that Kaidence can continue to stay healthy and that her heart may start to heal and recover if that is what is meant for Kaidence.

Todays Biopsy Results

I hope this post makes sense, because I have an awful migraine and am sick to my tummy. I wanted to update K's blog though.

We got to the hospital at 6AM, she was first case in the cath this morning. I walked her in, sat with her as I held the gas to her face and she held the gas to 'bear bears' face. Before, I knew it she was snoozing. No tears, no fear it went smoothly.

After her cath we met with the doctor that did it. He seemed concerned because Kaidence's pressures in her heart were higher than last Fridays. He worried that her heart could possibly be getting sicker. Hearing this news just made me want to scream and cry. Ok, I did cry. Things with his pregnancy are getting a little worrisome in regards to early labor and the last thing I need is another sick kid in the hospital. The thoughts of being back at the hospital and missing the 3rd straight first day of school........aghhhhhh! He wanted to wait and speak with her cardiologist and see what she thought.

Kaidence came out of the anaesthesia beautifully. We have found this new cocktail that works great for her. She woke up today, looked at me and within 10 seconds smiled and asked for her chocolate milk I had promised. She was happy and that was nice to not fight the tears that come after.

Around 12 noon we went down to meet with her cardiologist and for K to get her echo. I have been told the echo looked the same as last time. Dr E felt that Kaidence looked too good to have pressure that bad. She is not sure what happened in the cath but feels hopeful that we are still heading in the right direction. Kaidence's BNP (heart failure number) has significantly dropped, but still has a little ways to go. She reminded me that this could all take months to repair. We will watch her closely and call if we have any concerns. What a BLESSING!

Kaidence was not thrilled with the idea of heading home. She kept asking when she could go to her room. finally we told her she could have chili's Baked Potato soup and she left the hospital premises willingly.

I guess I should add that her biopsy results were just called into us. It is still the same as last time "suspicious". We know that Kaidence is holding her own with all the meds and that the antibodies are behaving currently. Hopefully things will continue to mend and that her heart can eventually make a full recovery.

It sounds so redundant, but Thanks so much for the many prayers that have been said for Kaidence and our family. Today, they sustained me and kept me from losing my mind.

Heart Cath this Morning

Heart Cath and heart biopsy first thing this morning to check for rejection. May not have laptop to update until later. Please keep her in your prayers today.

An update from HOME!

So obviously my adrenaline hit the floor and I have been exhausted. Sorry for no post. Kaidence came home from the hospital Sunday afternoon after playing the "we are out of some of her medications" game with the pharmacy. Needless to say, she is back on a lot of medications. We spent that night labeling syringes and drawing up meds.

Kaidence is doing well. As they removed her IV Sunday morning, she finally decided that she wanted to go home. She was excited to see her doggy and her brothers. Camden even let her wear his Sponge Bob Pj's to bed that night. They were huge on her, but she was thrilled. Kaidence is having a hard time understanding why she cant go to church on Sundays or go play at the neighbors like her brothers. She cant go anywhere because of her lack of immune system . That puts a few kinks in things, but we are SO GRATEFUL to have her home.

Kaidence is eating well and those little steroid cheeks are making a come back. She is very active. Her heart rate is still increased but the doc said that her heart is still large and that it will take time for that to heal. Friday morning Kaidence will have another heart cath to check for rejection. I pray that these meds are keeping it under control and that she can stay out of the hospital.

My pregnancy is starting to give me some problems and my NST's for the baby have been moved from once a week to twice. My fluid is getting lower and I am supposed to lay around, take it easy and drink a lot. Not that possible with Dr appointments 3-4 days a week, soccer and kiddos starting school (cant we have FULL DAY KINDERGARTEN)? Seriously, its ridiculous, especially on early out Friday. Just my opinion though. Anyhow, Camden is excited and so that is what counts.

So basically things are fine, just crazy like everybody else's life. Therefore, NO SCHOOL SHOPPING has been done. BTW.....school starts on Monday. As long as we are moving in the right direction, we are happy and content to juggle what we can. Our lives are blessed greatly. It feels so great to all be home together. I realize that when you are away from home you miss the little things like soft 2 ply toilet paper. Yes, we splurge on soft TP. Also, hair conditioner......what a luxury. Most of all I loved snuggling with everyone in MY bed. Going to bed each night and knowing that all my kids are tucked in under one roof.

I have to Thank my wonderful husband and kids that made sure the house was spotless for Kaidence to come home. Laundry done, put away and everything. He even cleaned out my laundry room. It felt wonderful coming home.

Thanks for checking in, we will let you know what happens on Friday!

A small little problem....she doesnt want to go H - - -!

This morning started out a little rough for Miss K. She no longer has access to any lines and therefore IV team spent far too long in our room this morning. Too many veins have been blown out this last week and they can no longer get ANY IV access to her for blood draws. The poor girl has bruises everywhere. I think they tried 5 or 6 IV's this morning. So therefore, cardiology requested that all morning labs be canceled. We will just keep our fingers crossed that things will continue to be stable until Friday. She has a junky cough and some fluid in her lungs but is keeping her O2 levels where they need to be. So far they are just watching it.

Tonight she is TRYING to get her last IVIG treatment before heading home, but the darn IV is shot. Knowing that she has no more access. We are ready to have her stand on her head to see if it will work long enough to finish. Fellow tx moms who's kids have needed IVIG, does it make your kiddos a little grumpy? It seems to do this with Kaidence. She just wants to be left alone.

Other than that, she has had a great day. However, we now have a problem. After getting to order whatever she wants and whenever, riding a bike around, driving in her little police care, glitter, painting, coloring and bubbles.......Miss K informed me tonight that she does NOT want to go home. WHAT THE HECK?????? I told her that I was sorry, but mommy was ready to be home. I haven't been home since August 1st. Not even stepped in the house. So to my fellow PCMC frequent fliers....stay away from child life and don't let your child have any fun when they come. What kid doesn't want to leave? Obviously she doesn't remember being intubated, the talk of crashing her onto ECMO or her mom once again pleading that she not die. Maybe they should have wasted some of her drugs on me, I wouldn't mind not remembering.

BTW, am I the only mom that finds herself living on 'uncrustable' PB & J sandwiches when here? That's all I seem to eat. Is it because it makes us feel closer to home and our daily routine? I think it must be.

Oh Kaidence. Your mommy loves you so. You make smile, you make me laugh and you also make me want to cry some days. Thanks for being who you are BUT, I am NOT letting you stay tomorrow!!!

Good News!

Kaidence went in bright and early this morning for her heart cath. Everything went well. Her pressures were so much better. We just got the biopsy results. Her antibody rejection is only
"Suspicious AMR" where as last week it lights and sirens positive AMR. We are SO happy with the results, considering we are short 2 blood dialysis treatments. I have had so much anxiety today. The plan has changed a bit. Tonight we will start some new treatments called IVIG. She will get one tonight, tomorrow and the go H _ _ _ _ on Sunday. A whole week earlier than expected YEAH!!!!!! Kaidence has a BIG list of meds once again, but not as many doses as post transplant. That will taper off over time. She cant wait to get home and see her doggy Kirby. Next Friday, Kaidence will have another heart cath and they will once again biopsy just to be sure those antibodies aren't trying to pop up again. Appointments with cardiology will be weekly now for the next little while. I am ok with that, because I am a bit more paranoid now. I prefer they closely watch her.

Today Kaidence has had a good day. She is eating well and keeps me busy. She is patient and kind to the nurses and they all seemed amazed at what a polite little 3 year old she is. She never throws any fits here and always wants to help her nurses. Those doing her dialysis treatments were also amazed at what a good natured, sweet little girl she is. I am proud of my Kaidence. I never want her to be a "cardiology brat". We work hard to try to avoid that.
Doesn't mean she's always on her best behavior, but no problems this trip. Today she was SO excited for me to take her up to the patio and ride a bike. We had to scrub the thing down so she could ride it, but it was so worth it. The sunshine felt great as well. Tomorrow we are hoping to go up again and Kaidence will get to paint the walls and concrete of the patio until her heart is content. She has become a little artist this hospital stay. Yesterday she painted, used stickers, made a magic wand and had fun with glue and glitter. Lets just say it looked like "Fancy Nancy" threw up in her room. In fact, she still had glitter on her body this morning when she went to the cath lab.

Thank You all for your prayers this week. It was hard and unexpected. It was heartbreaking to see Kaidence so deathly ill. I am so grateful for prayer, fasting, great family and friends. Thank you for always being there for us. We could not walk this journey alone.

Heart Cath in the Morning

Oh, I am once again ready for bed. So I will keep this short and sweet. Today Kaidence had 2 different attempts to do dialysis on her blood. Both attempts failed because her lines aren't working well. Because these lines go into her heart and are so invasive to redo (they are not IV's) cardiology has come up with a new plan. Its not what they ideally wanted, but they hate to put her through more procedures just to get working lines. Kaidence has only had 3 of the 5 dialysis treatments.

Here is where we once again hope you will pray for Kaidence. Tomorrow morning at 7 am Kaidence will go in for another heart biopsy. With no access for the dialysis we are hoping that the 3 treatments she did get have gotten rid of the antibodies. If not, she will under go more procedures to place new lines. These lines are risky because they can carry a great risk of infection, so the sooner you can get them out....the better. The docs are really happy with how well K is looking. Her labs look great and so they are hoping that things could possibly work out for tomorrow. If that is the case, she would likely be coming home in the next few days. If not, we will just cross that bridge then.

That's today's news. Hoping that the cath goes well ( after her episode, I am pretty nervous for the morning) and that their are NO MORE NAUGHTY ANTIBODIES!!!!

Busy, Busy

I knew I would forget everything that happened yesterday, but I was just too tired to post. Yesterday Kaidence got her 3rd blood treatment. It went well. The gallop that the docs could hear in her heart beat is gone (good sign). We were moved to the floor sooner than they expected because she has made such good improvement much quicker than thought. I must say that it is nice having our own bathroom, because I live in it! I had an OB appointment and the babies amniotic fluid is getting low. Therefore, I have been instructed to rest (ha, ha) and drink even more!!!

Today, Kaidence had some dressing changes on her central lines. Her labs look good and her echo had improved from the one 2 days ago. Her heart looks like its starting to slowly recover its function. Did I thank you yet for the prayers? They are slowly starting to taper her steroids. Kaidence is back to being Kaidence. Today she wanted to run the halls, but she cant really go to far because of her immunosuppression. The lines in her leg make her hobble around, but she is happy. We spent the day convincing her to eat the yummy food, trying to get her to drink, getting a new g-tube, echo, dressing changes, unclotting her central line in the neck, coloring, painting, putting stickers EVERYWHERE, meds, meds and more meds.

Tomorrow she will get another treatment on her blood. During these treatments she is hooked up to a machine and they slowly pull the blood out of her body through her neck, filter out her plasma and replace the blood through her groin with new plasma. Monday she will have another heart cath to see how it is working and check for rejection. It turns out that her body has made 2 different types of antibodies against her donor heart. This treatment should pull them all out of her blood and hopefully with extra meds we can trick her body and get it to stop making them.

So basically that's the plan. Kaidence has made such an amazing improvement. I am so glad that it is this week and not the last. I think it will take some time for me to relax a little about what happened days ago, but slowly I will work through it and get back on track. I don't want to live fearing every moment knowing how quickly it can change. I had just reached a new found confidence in Kaidence's health and Independence when this happened. It only took 2 1/2 years. Hopefully, I can mentally get back to our normal as soon as possible. Thank you everyone for all of your support. I could never imagine doing this without you.

Going to Bed

I promise that I will update tomorrow. I am just too exhausted. Just know that Kaidence is doing better and we even moved out of the CICU today, sooner than expected. Thank You for your love and prayers. Hope you all have a good night. I am heading to bed now.

A GOOD DAY!!!!!!

I know, I should have posted long ago. The truth is that Kaidence looks so much better and therefore I have been BUSY! Yesterday she had another treatment on her blood. This time everything went much smoother. She started waking up a little more yesterday. She had a very hard time coming off the narcotics and was having some pretty bad night terrors (med side effect). She had no idea who Mike and I were, yet she was yelling for mama and dad. Her blood sugar is getting better and they have taken her off the insulin. As of midnight, Kaidence was taken off the Milrinone (heart failure med that helps your heart squeeze). Her echo today looked the same as 2 days ago, but the doc is happy with that because the one 2 days ago she was on the milrinone and today she wasn't. Therefore, her heart seems to slowly be getting better.

Today, Kaidence is more like herself. She looks pretty dang good in fact. Many are relieved at how Kaidence is turning around. They all said they were very worried. Some nurses called to check on her as well over the weekend. I am glad she is so loved and cared for.

Today we cleaned all the tape marks off her, gave her a bath, did her hair, painted her toes, she has even had a little to eat. She is still very weak and has a hard time walking a few feet, but she will get there. Her poor body is so bruised from trying to get central line access. She does have some issues with the skin around a line that they are closely watching for infection.

So the plan is to do her blood dialysis in the morning. Treatments will continue this week. She will then have another heart cath on Monday to see if the treatment is doing what it should. she will then have 2 days of IVIG treatment.

That's about it for the day. Lets just hope these treatments are working. Thank You for the prayers, if you could see what my eyes have seen this last week... you would never doubt that prayers are heard. I am amazed by her turn around.

A New Day.

First, I want to Thank everyone for once again praying for Little Kaidence and our family. Your prayers have been felt.

After thinking that we were losing Kaidence on Thursday, I have yet again had much time to ponder. I am so grateful to be where we were, when we were. I am so grateful to have the Dr. P there. I didn't realize until last night that they pulled him out of the ER when K had her episode. However, the moment he showed up I felt so much relief. I totally trust him and he knows Kaidence.

Mike and I were able to get some sleep last night, together on on our twin bed. Kaidence is looking better and this morning she was .......EXTUBATED!!!!!! She is still pretty drugged, but I can tell she is happier.

Her echo this morning showed that her heart is still very big and her valve is leaking a great deal. That however is to be expected. Our hope is that with time and treatment, it will resolve over the next few months. Her labs are looking better. She is still on insulin because high doses of steroids have thrown her blood sugar. She is still on IV meds to help her heart pump. I am happy with her progress, it will take baby steps but we are heading in the right direction now. Hopefully, her heart can make a full recovery.

We will be in the CICU for at least a week, possibly longer. Her next dialysis treatment for her blood will be tomorrow morning. We are praying that these dang antibodies will go away and that these treatments will help

Thank you again for everything. Our hearts are full once again.

We WILL have a good day.........

I think its safe to say that we are TIRED!!! Went to bed about 4 AM after 2 failed attempts to do the dialysis on her blood. The line they placed last night, is not working for what they need. She had a blood transfusion last night( thanks to all those that donate blood). New line this morning and getting ready for attempt 3 for the dialysis. K needs this to work to get rid of her naughty antibodies and we need to get this into her system quickly before her heart failure gets worse.

My emotions are, shall we say...........VERY UNSTABLE. Being 30 weeks pregger most likely does not help. It is heart breaking to see Kaidence this way again. Its unsettling, it scares me. I think I am haunted by the fact that Kaidence just 48 hours ago was running, dancing, swinging on the swing set at the cabin and now........... I keep thinking, why didn't I give her another big hug yesterday before her heart cath. I try to embrace those moments with all my kiddos, but for some reason when something like this happens...it seems that you never did it enough.

Kaidence is not fighting the breathing tube today. She seems comfortable and for that I am so thankful. She received a blood transfusion yesterday because a lot was lost into the machine during the dialysis last evening. We are taking one day at a time and are hoping and praying that later today she will start to turn around.

I take so much comfort in knowing that she has so many doctors and nurses that love her helping in her care. Even if they aren't directly involved today in her care, they are still stopping by to check on her. We love the great people here and we know that they will do all they can for her.

Today your prayers are being felt once again. Its amazing the gift of comfort they can bring. Its moments like this that I know Heavenly Father truly walks beside me. My heart is overwhelmed by love and mercy. I am once again humbled by these experiences.

Like I always say "Faith makes things possible.......NOT easy. Thank you all for praying for my baby girl. I guess she is NOT a baby. Last night when she was intubated the nurses keep calling her "Baby Girl" because that is what they always called her. Kaidence briefly tried opening her eyes and she shook her head as she tried to mouth "I not a baby". I know that she is still in there somewhere.

Thank you, we feel overwhelmed by your love, prayers and support. Thanks for loving her. We will keep you posted.

ROUGH NIGHT.

Today has been rough. Much rougher than any of us expected. How does a kiddo go to the opposite extreme so quickly? Honestly, it terrifies me.

The attempts for the PICC line in her arm failed. She came back to the CICU intubated. She has been miserable and has fought the breathing tube all night. That breaks my heart watching her coughing, crying and not being able to hear her. Tonight they placed a line in her groin and planned to extubate after. However, as I waited outside her room her heart rate and blood pressure severely dropped. As I could hear them rushing around for emergency medications I was told that Kaidence was seriously ill and that I should go and be by her bedside. Mike was on his way to the hospital after grabbing our stuff from the cabin. I buried my face into Kaidence and once again found myself pleading with Heavenly Father to let me keep my baby girl. I know that ECMO was briefly discussed. Kaidence's HR and BP have are looking better at this moment.

The biopsy came back and unfortunately Kaidence's rejection is with her antibodies. This is what we did NOT want. The plan was to start her blood on dialysis tomorrow, but because of tonight's episode they are starting tonight. In fact, in a few minutes. PLEASE PRAY for kaidence. This treatment could once again drop her BP and its already low.

For now I think that is all. I am exhausted and figure we still have a long night ahead of us. This brings back too many memories and emotions. I am scared, I am sad, I love my little girl.
Thank You all for loving Little Miss K!

Rejection Update!

It turns out that Kaidence's rejection is much worse than we originally thought. She had her cath this morning, is currently having a PICC line placed and then she is being moved to the CICU. We will know the severity of the rejection more accurately tonight. We have been told to plan 1-2 weeks in the hospital. I will let you know the results when I get them tonight. We are waiting to see her. I keep going over and over in my mind what I missed. Did she have warning signs earlier that I missed? I don't think so. She has done so well, its hard to see her healthy heart sick.

Thank You for your prayers, we need them.

REJECTION!

Please keep Kaidence in your prayers. We drove down from the cabin last night to PCMC after we noticed some changes in Kaidence. It looks as though her body is fighting her Beautiful Angel heart. Her heart is in rejection and Kaidence has been admitted to the hospital. I knew it was going to be a bummer visit when they put us in our 'bad luck' ER room and yes, we have certain rooms that bring us good luck. Anyhow, when they came to me and told me her heart was large, it made me sick. This is our reality with transplant. We knew when we went into it that we were trading one basket of problems for another. However, we have been extremely blessed and this is the first time K has been admitted for rejection. I guess deep inside you always hope that your child will somehow be the one that goes rejection free.


They have started her back on heavy duty immunosuppression (so I am back to being a GERM FREAK......ok, not sure I ever stopped that one). But seriously, we will have to be very careful again with who comes into our home for a little while.

The plan for today is to take Kaidence into the cath lab around 11 and biopsy her heart. This will tell us what type of rejection she has (cellular or antibody).....we are hoping for cellular.


We are so grateful for her beautiful heart. We know that it came from a tough little guy that too played hard and lived life to the fullest. We know it is strong and as Kaidence always says "My heart is Happy". And in the end....that is what matters!

Thanks for your prayers, we will keep you posted.

DADDY GRADUATED!!!!

It's official, my hubby GRADUATED with his degree. Its been a long journey with everything these last few years but you stuck with it and now ITS DONE!!!!!!!!!!!!!!!!!!!!!!!!!! Most of all, I am PROUD of you and I LOVE YOU!!!

* Kaidence is doing GREAT!!!!!! Holy cow, I cant keep this girl fed. She is an eating machine. I must admit that I am not use to feeding her so much. Tonight at dinner she ate more meat than anyone at the table. She LOVES meat!

I have had many people think that Kaidence must have had her surgery because her voice is noticeably louder and much clearer. It is still softer when compared to other children, but for her it's a major improvement. We feel so blessed by the fact that her vocal chords are now healed and all the concerns that we had are starting to resolve themselves because of this. What a blessing.

Kaidence just finished her swimming lessons. She loves the water and loved going everyday. She also got her first tan line despite all of my best efforts to slather her. Everyone needs some Vit D, right? Sunscreen is part of our daily routine. Due to the fact that she is on immunosuppression drugs, she is at a higher risk for cancers. Skin cancers being one of the big ones. So therefore we have been instructed by her docs to keep her covered and we do. At least she hasn't burned. It has protected her that much. People often comment on how pale she is, I just tell them that she's my little vampire. After all, vampires are 'the thing' right now.

Some History on her vocal chords

Kaidence was SUPER grumpy last night coming out of the anesthesia, WOW! She was very upset that they put her IV in her foot and not her hand. The moods swings were a little more than I had seen with the versed wearing off in the past. However, awhile after we got her home she seemed to click back into her normal, sweet self. She was a hungry stinker and had 2 bowls of Captain Crunch and some cheese (and she wanted a taste of Coke...no idea where that comes from). So much for slowly getting in to her regular diet. But she did notice that she didn't have an owie on her neck.

So a little history leading up to last nights events for a better understanding. Back in 2007 they started scoping Kaidence when she was in the CICU trying to figure out breathing issues, digestive issues etc. After her transplant they once again looked closely at things because she could not clear her own secretions. At one point a trache was discussed, but very briefly. It was determined during these procedures that Kaidences right vocal chord was indeed paralyzed. He then gave us a year for some slight possible recovery of it, but after that no improvement would take place. So when we took her home post transplant Kaidence was not allowed ANYTHING by mouth, because she could not swallow. When you have a paralyzed vocal chord it affects, your O2, swallowing (your airway never is completely closed) and speech. All of which Kaidence has really struggled with. Months into being home in 2008 Kaidence would undergo all the fancy swallow studies to see if it was safe for her to eat. All the while it being reconfirmed that the vocal chord on the right was paralyzed still. Last summer Kaidence had her tonsils and adenoids removed by a different doc. At that time he also noticed the problem and then referred us on to this other doc for the repair of the chord.

About 2 months ago we took K in to see this doctor. He is the same one that saw her all those times in the CICU and did many of the swallow studies for us. At that point in time I explained that I felt her vocal chord was better because Kaidence now has a faint cry and voice verses nothing at all before. I was hopeful, but then he scoped her that same day. He then told me that her vocal chord was still paralyzed and after reviewing records, it was just as bad as it was originally. It had made NO recovery whatsoever. At this point it was so bad that it was laying off to the side and not in the place it should have been. Your vocal chords make a "V" shape when open. That was when we knew that the surgery was needed to repair this.

We had high hopes that this would fix all of our current issues with Kaidence and so last night when we found out it was no longer the case, I was not too sure what to think. Was this just some freakish misunderstanding for the last 3 years and after all the scopes that confirmed this problem? Or was this another answer to prayers and evidence of the power of the priesthood? Looking back at her blessing last evening before going in, I prefer to believe it was the last situation.

Like I said last night, the doctor was shocked himself. He was not expecting this situation. Both vocal chords were where they should be and both vocal chords moving as she was breathing on her own. Both of which have never been seen before on Kaidence. So needless to say, we are anxious to look further into this situation. We count our blessing that he double checked before he cut. We will meet with this doc and K's GI doc together to discuss what to do next. Likely she will definitely have the 'floppy things' surgically removed. It is also very likely they will want a full GI scope on her and many other test to confirm if this is truly due to reflux. She was checked before to help determine if a Nissen was needed with her G-tube, but it was then determined unnecessary. He does not think that getting the reflux under control will make much difference with the choking and soft voice, but as we know....anything is possible.

So we are done sitting around in the house and letting our summer pass us by. We start swimming lessons next week and look forward to the vacation that was canceled for all of this surgery stuff. I am ready and I am pretty sure my kiddos are too. Thanks for always sending love and prayers our way!

NOT WHAT WE THOUGHT!

As you all know, Miss K does not follow the rules.......she makes her own. A little over an hour into surgery the doc came out and explained that he no longer thinks that K's vocal chords are paralyzed. He seemed very surprised. However he did find some weird swelling and floppy things in her throat consistent with acid reflux. The floppy things can be surgically removed, however not tonight. We need to do some investigating into whether this is really the case. Removing the 'floppy things' will help improve her sleep apnea and could possibly help her sleep apnea. He however does NOT seem to think that it will help her choking issues and her very soft voice. Bummer! That part has me concerned.

The plan, we will go home tonight once the anesthesia wear off and then meet with the surgeon and her GI doctor to get a plan in place. Post transplant she use to vomit 8-10 times daily, but has not for a long time. We had to take her off reflux meds because it caused her white count to drop dangerously low. We haven't seen any problems with reflux, but I guess you never know.

I am tired, smell like pee and need to go be with my baby girl. I wonder if she will be shocked by how easy her surgery was. Do you think she will be sad that she still doesn't have her Mermaid voice?

In Surgery!

They took Miss K in around 6:15 this evening. The doc said that it could take anywhere from 2-4 hours depending on how small the nerves are in her neck. I have a feeling that they will be pretty small, so I am not expecting anything too soon.

Kaidence did amazingly well today without being able to eat. She is such a sweetheart. She never complained, cried or threw a fit. She is such a good girl. Before surgery Mike and I took her to see Toy Story 3. She loved the movie and then we drove straight to the hospital.

We checked in and then the nurse gave her some versed, but nobody came to take Kaidence into surgery. Therefore, my sweet little Kaidence peed all over my lap. I think she tried telling me, but her speech was so slurred it was hard to understand anything. She had that oooopps look on her face, but thats ok. Just looks like my water broke and I now smell like urine.

Thanks for checking in on K, we will keep you posted if we hear anything.

SURGERY RESCHEDULED FOR MONDAY NIGHT!

(This post was written Friday but never posted. I am too lazy to rewrite a current post and all the info is still the same. ) However, I am no longer grumpy but seem to be a little more nervous for the surgery than I was last week.

Yes, I am still frustrated. One may even say grumpy about the whole surgery ordeal. I am sick of house arrest (although we should be use to it), worried because K has already been off her baby aspirin for the 2 weeks in prep for the surgery and she needs to get back on it and concerned because as of July 1st she no longer has her secondary insurance. I guess at least we will still have the one insurance, that's a blessing. Shall we just end with the fact that I feel like I have some serious pregger hormones right now.

This morning his office called and let me know that we will not know until Monday when we can reschedule her. All the OR's are booked out and on Monday they are over capacity. Then her Doc is leaving town for 3 weeks. There is no other doctor that knows how to perform this surgery, so that is not an option.

The scheduler just called to let us know that the doc called the hospital and they will allow him to perform a late surgery on Monday night. He has a full day of appointments and will perform that evening. I guess they are over capacity, so who knows how smoothly this will go. I think my biggest concern is that at the end of the day the OR has been known to run hours behind and I have a 3 year old that does not understand the no eating/drinking for hours on end. That is why the little ones always get the first morning appointments available. I will be praying that things run close to 'on schedule' and that K will have patience and just not be hungry or thirsty that day. Easy enough, right?

Kaidence was sad that she did not get to go to the hospital and have a ride in the wagon. She also wanted to wear her new mermaid nightgown she got from Nanna and Papa to help celebrate her new Mermaid voice. What the heck, I had to unpack her suitcase anyhow, so she wore it proudly to bed last night.

My cute little Camden lost his first tooth yesterday (Thurs.) My baby boy is growing up. He was so excited. Part of me was sad because he had planned to stay at my parents house that night because of the surgery and I would miss seeing his excitement from the tooth fairy coming. I guess its how it goes. McCaden lost his first tooth the night Kaidence got her heart transplant. I wasn't even there for it. He spent the night at the neighbors and the tooth fairy paid him a visit there. Yes, I cried knowing that I missed it. Yes, I also had guilt. BUT, today they are with their Nanna and Papa at Boondocks having a great time and K and I are just hanging out at home watching Sprout Tv.

We will keep you posted on Monday. Good Luck to all our friends heading into procedures today up at the hospital. Wish we were there to visit with you over a scrumptious meal at 'The Rainbow.' Know that we are sending happy thoughts and prayers your way.

Surgery Canceled!

Kaidence's surgeon just called and canceled her surgery for tomorrow because he has a doctors appointment for himself. I guess someone forgot to let me know. AWWWWWWWHHHHHH! Bags packed, boys farmed off, Mike off work, Kaidence not sick. Seriously? This is what happens when you cancel a family vacation for a surgery. So I guess Miss K will continue her house arrest a little longer. I will end being positive "maybe this is meant to be."
THE END

Surgery Time!

Well, Kaidene's surgery date is almost here. As much as I get super nervous for these sorts of things, I am grateful that the time has finally come. The vocal chord issue with Kaidence has been a bigger issue for her than I think we truly realized in the beginning. I am so grateful that technology is where it is and that we can improve this situation and her safety, I am a wreck sending K anywhere because she does choke so easily. She had a little episode on Sunday in church and both Mike and I looked at each other and said only 5 more days.

We are scared but optimistic. Hopefully this will be the final thing that needs to be fixed from the many months that she was sick in the ICU. This is the surgery that represents that we now have a 'big girl'. She needs it to go to preschool and had to reach a certain age to have it done. Ever since we brought K home from transplant we had a list of things we needed to do or get fixed on her. Besides heart caths (she will have those for the rest of her life) this surgery is the last thing on our list (knocking on wood).

I heard her tell the neighbor that she was having "surgery on her vocal chord" she then proceeded to tell him that she would also get "an IV in my arm." So needless to say, she is prepared. She told Mike and I today that she would smell stuff in her oxygen and then she threw herself back on the bed and pretended to snore. I am not sure if I laugh or cry. She is telling others that her mommy, daddy and Auntie (a favorite nurse at the hospital) will be there when she wakes up with a princess balloon. I guess we had better deliver.

I am so proud of my baby girl. She is strong, she is a fighter and she has been blessed with a grace, patience and understanding well beyond her age. No doubt, another blessing from her Father in Heaven.

Fetal Echo Results!

I was waiting to post because I have some fun pics of Kaidence that I wanted to load.......pictures not loaded. I will post anyhow. Friday was our fetal echo and I was nervous. Our appointment was at 9:30 at Primary Children's and we took Miss K with so that she could see that others get these things done as well. Everything with the babies heart looks normal. The function is great and as of this point the baby does not show signs of cardiomyopathy. Big Sigh.........although, they were sure to let us know that things can always show up later in life.

I found Kaidence's pathology report from when she was transplanted. When they explanted her old heart it was cut up and studied and then a report was written on the findings. Kaidence had normal heart structure, besides the things that were caused from her heart failure and cardiomyopathy. So basically, no abnormal structure to it. I also read in a genetics report that all findings are still leading to viral myocarditis which led to dilated cardiomyopathy. That every test run, came up negative for any genetic findings. Cardiomyopathy is one of those diseases that does not have much known about it yet. During our fetal echo the doctor said that research is just starting to scratch the tip of the iceberg for cardiomyopathy.

So for now we are counting our blessings that so far things look well with the baby. The baby is getting pretty active, especially when I lay down for bed. We are so excited for our new little one, although it still seems so far away.
We embrace these moments of peace that the Lord grants us.

I will get those pictures loaded, hopefully this week.

OUR BABY IS...............

A ............SURPRISE!!!! I guess that you will just have to wait and see as well. McCaden was the only one we tried finding out with. Camden was pretty dang obvious and Kaidence we left as a surprise and she has been full of them ever since. We are just hoping this one will be a surprise only in the beginning.

I was nervous as today approached. They took some extra good looks at the heart. So far everything with her looks good (knocking on wood). The baby is a great size for where it should be and my progesterone shots so far seem to be doing their job and keeping preterm labor away. My migraines have finally tapered off, that is a blessing in itself.....I can function again!!! We go for our fetal echo on the 11th of this month, I know that I will be nervous all over again. Kaidence's cardiologist said that sometimes cardiomyopathy can be diagnosed on ultrasound and other times it doesn't show up for awhile or even years. However, we are all still banking on the fact that she only became ill because of the stomach virus. We are just playing it safe.

Better go. We still have much cleaning up to do. Our basement flooded this weekend. Who would have thought that 2 hours of having the toilet tank filling over would cause so much of a mess and make it into so many different rooms. Kinda sad, I had to throw away a lot of pictures from high school and other things. I guess that flooding is one quick way to dejunk!

PARANOID AND A BUSY DAY!

PARANOID!!!!!! Any one else have this problem???? I do really well for months at a time and then all of a sudden, I start to ask questions. Because we have no "positive"diagnosis for Kaidence, we have to just go off thinking it was viral. With no family history, there is always the chance that it is some genetic gene that started with Mike and I. I know for 100% that this IS part of Kaidence's plan, that I do not doubt. However, every now and again, I start questioning myself. What if we never went on that vacation? What if nobody had been sick? What if it really isn't from the virus? What if she had it all along and I never noticed? What if my other children have the form of Cardiomyopathy that isn't discovered until around the time of puberty? What if I did something wrong during pregnancy? I also have plenty of "what ifs" for Kaidence's future, but that I know is once again in the Lord's hands. This goes on and on. Normally, I don't think much about it. However, I think that with this new pregnancy the paranoid me is taking over. I know that I have my fetal echo coming up and my hands start sweating when I think about it. I knew that I would have these feeling and worries if I ever decided to have another child, just didn't think I would find myself looking so far into Kaidence's past. However, no matter how many thoughts I have of the "what if''s,"they could never compare to the countless times a day that I count my blessings and realize the miracles I have seen in the "what IS" in my life. I understand how incredibly blessed we are. Kaidence is here because of an AMAZING family, a darling little boy and a loving Heavenly Father that knows her plan in life.

Anyhow, today was a long day at the hospital. It started out with labs at 8:15, ENT at 11:45 and then cardiology at 2:00. We made it back home around 5:00. K's ENT appointment went well. They scoped her today (sent a camera up her nose and down her throat) to get a look at her vocal chords. I explained to her earlier what was going to happen and she was such an angel. Yes, she cried as they were scoping her, but that was it. God has defiantly blessed this little girl with a very unique look on life and patience.

The verdict is that K would greatly benefit from the vocal chord repair. It has only been done on 20-50 kiddos (max) in the US and Dr. Smith says that he has done at least half of them. They will take a nerve from her neck and thread it through her vocal chord. This will not cause the vocal chord to start working again, but it does give it some physical tone and bulk (like with muscles) so the left vocal chord will not have to compensate so much. Currently, Kaidence's airway does not completely close when it should. This is why I am so paranoid about her choking or aspirating and this is why she does it so often. Having her vocal chord repaired will help her voice and cough be stronger, helps with her O2, help her swallow easier and protect her airway when eating.

Dr Smith feels that this will be successful with Kaidence and we are excited to get it done. You never want your child to have to have surgery, but she needs to go to school and play with friends without having her mommy there to do the Heimlich if something happens. She knows that today's ENT appointment was to help her voice so that she can sing like the Little Mermaid, with that explanation she was content. Her surgery will take place in June.

Next was cardiology. I was SO nervous for today's appointment. Once again I think it was a combination of the pregnancy hormones, Kaidence's recent headaches and the fact the we hadn't been to cardiology for 3 WHOLE MONTHS. I was so nervous for the echo and today it seemed to take longer than usual. When they left to check the pictures they were gone for awhile and then came back saying they needed a couple more. This usually happens to us if something looks off. Thankfully her echo looked great and we don't have to go back for another 3 months!

Kaidence's white count is a little high, but we think that is just from a viral infection . We will keep a close eye on that and her headaches. Cardiology was not thrilled with Kaidence's recent weight loss, which I was prepared to hear about. I explained to them that she was slowly gaining, but then Kaidence needed to be like a normal child. That means GOOD EATING HABITS. We know that she CAN eat, therefore she needs to learn that she cannot have Instant Breakfast for every meal with ice cream and potato chips. What parent would think that was ok for long term? So we have had to pull back and broaden her horizon with 'real food'. This is starting to come along and hopefully her weight will pick back up. She will eat a half of a sandwich at a time, or a whole hot dog without the bun (OK, I know that a hotdog is not 'real food', but have you seen the calories in them?). Oh and does eating ketchup count? She would drink it if I let her. So eating is still our goal and honestly may always be with her.

Kaidence, has started her training so that she can get employment at PCMC in the future. Whether it be in the lab trying to take her own blood, in the Dr's office taking her own BP and temperature or in the echo placing all of her EKG stickers and spreading KY jelly all over her chest with the wand. Watch out and fear for your jobs.....she is ready.

Today during her echo she was so cute. As they were taking ultrasound pictures of her heart, they turned on the volume so you could hear her heart beat. As proud as could be she turned her head quickly to Belle doing the ultrasound and said "that's my babies heart beat in my tummy." The rest of the ultrasound she kept pointing to the screen and saying "see my baby" as she rubbed her belly button. Yes, she has been to my ultrasounds and as always.....there is never a dull moment with Kaidence.

For being at the hospital today for over 6 hours you would think that Miss K was ready to go home. Nope, not the case. In fact she spent the majority of her appointment hanging out with the MA's at their desk while I sat in the room and chatted with the transplant team. I kept telling her that she needed to come back in the room, but they insisted that she was fine to hang out with them. And when it was time to go home.......she cried and I had to carry her out of cardiology. She may not have been ready to leave, but I sure as heck was.

So that sums up the day and gets things up to speed with Kaidence. Thanks for checking in and have a good one!!!!

.....IT REALLY DOES HAPPEN

Is it really happening? I keep asking myself, pinching myself. KAIDENCE is EATING and taking all of her MEDS by MOUTH!!!!!

Since July 2007 when Kaidence got the virus that attacked her heart and put her into heart failure see has been tube fed. During the many months she spent in the hospital she was in a medical coma and therefore tube fed into her intestines to prevent throwing up and aspirating while intubated. When she was transplanted, we found that she had to relearn how to swallow and everything else because she had been intubated so long. We took her home with suction and suctioned her every couple of hours. We also learned that she had damage done from the lengthy intubation period and that her vocal chord had become paralyzed, therefore she could not cough and protect her airway.

Months after transplant we pulled kaidence's tube from the intestines into the stomach and she started getting food in her tummy for the first time in a VERY long time. At that point I thought the whole feeding thing would be a breeze. Who doesn't love to eat????? I was so wrong. We knew we were once again into for the long haul and so that same summer she got her g-tube - it was the greatest thing ever!!!! Kaidence was throwing up 5-6 times a day around the clock. Oh, the smell of thrown up vanilla pediasure! Her stomach was not stretched. Needless to say many of you moms know that struggle from this point on. The laying in bed at night and thinking of how you can run feeds at some magical rate to keep your kiddo from puking. How you can quickly put weight on your kiddo before the next cardiology appointment.

After countless hours of feeding therapy, wasted baby food, doing the Heimlich, chipmunk cheeks full of food that she would spit everywhere 20 minutes later and many tears of frustration...........it has happened. It started when I would tell her that if she chose to not eat her food that I would have to feed her through her g-tube. That was all it took, she would say "no g-tube" and finish every time. I have waited on posting because I am afraid I will jinx us. Suddenly Kaidence is an eating machine. She is constantly hungry for anything and everything. I find myself just starring at her. I cannot believe my eyes. For example last night I gave her all the left over mashed potato's and gravy knowing that she would never eat it all, but wanting to get rid of the left overs. She ate every bit of it. Then later that night we went to the Artic Circle for ice cream. I almost got her a kiddie cone, but then knew that she would want the same as her brothers. It was a big ice cream cone so I figured I would have some of hers. Not so, she ate everything....including the cone. Then she proceeded to tell me that she wanted a cheeseburger. What?????? So I order her a cheeseburger and had her split it with camden. She ate every last bit of it.

With her meds we started by flavoring her blood pressure medication and she loved it. So we then went to the others. Now she is taking all of her medications by mouth as well. Is it time to say goodbye to the g-tube? Possibly, but I m too afraid. It comes in much to handy when she gets sick. I plan on keeping it for awhile just to be safe. Also I want her to have it for a vocal chord surgery that will hopefully be coming up in the next couple of months. I am sure that will be pretty rough on her and we will need a way to get her meds and food during recovery. I figure, if you have it you may as well use it.

As of right now I have a garage full of Nutren Jr Vanilla. It does not have the added fiber. I may also have some cans of Duocal. I am not getting rid of all of it, just in case. However, as the expiration dates get closer I will be getting rid of it. I have some that I do need to get rid of, if you are interested in it, you may have it. Just let me know!

AN EASTER HEART FOR MASON!!!

Happy Easter family and friends......as you know I BELIEVE IN MIRACLES. I KNOW that Heavenly Father has a PLAN for each of us. My heart is full of emotion for these things that I know and have witnessed in our own lives. Kaidence's little heart buddy Mason is getting a NEW HEART for EASTER.

If you remember, Mason is the little boy who's mom I sat and cried with while the doctors at PCMC told her that Mason was not eligible for a new heart and that he had about 3 months to spend with his family. Since then Stanford University has agreed to list Mason for a heart. Summer has been living at Stanford University while Mason was listed for a heart and her hubby and other kiddos have been here in Utah.

Mason should be going in for surgery this afternoon. You can follow his blog HERE. Please pray for the many involved. PLEASE pray for the sweet family that on this Easter day with their broken hearts, turned to another and gave them this gift....of LIFE and HOPE. How appropriate for today.

May your hearts be fuller today and may the love that Heavenly Father has for each of you be known and treasured.

We love you Mason!

A SURPRISE FOR US!

Well it seems as though I cannot hide much longer. I am here to announce that we will have a new addition to our family this October. OK, I always deliver a month early so most likely this September. We are excited, terrified and thankful all in the same breath.

The kids are very excited and I think that this will be such a great thing for Camden to see what it is like to have a healthy little baby in the family and great for Kaidence in so many ways as it will help to pull that attention away from her in a healthy, normal way. After all, we want her to be a normal and well rounded kiddo. McCaden is pretty excited as well, except for the dirty diaper thing.

This decision was one that we have contemplated for a couple of years. Mike and I always wanted more kids, but then Kaidence got sick. I remember sitting in her hospital room and telling him that he might as well get fixed because I WAS DONE!!!! How could I chance my heart on more heartbreak? We met with genetics last summer and no new info was given. They still have no hard evidence of exactly what happened with Kaidence, but they really think that the stomach virus was the causes of her heart failure and deep down we do as well, but I still find myself wondering if I did something wrong. They basically think it was all bad luck. We have always had issues with pregnancy losses in the past, however after everything we have seen with Kaidence and all the amazing families that we have met along the way we now have a different perspective than many others may. I guess the innocence of 'be the perfect, healthy mom during your pregnancy and you will deliver a perfect healthy baby' is no longer.

Could we handle another? What about the age gap if something happened to Kaidence? What about the times that we spend in the hospital, the boys are already use to life this way? What if we had another sick baby? Can I give everyone enough attention? What if I am on bed rest again, who would take K to cardiology? What if we delivered another preemie like McCaden? On and on this went. We could see so much good and happiness, but we could also see all the "what if''s".

Needless to say, Mike and I did what we have learned to do with many other important things. We prayed and turned it over to the Lord. He knew what was meant for our family and he knew that we would be accepting either way. Nothing happened for a long time, in fact we just figured that was our answer and that was that. Then one stressful morning with Kaidence at the hospital we found out. It was the morning if you all remember that her heart stent disappeared from her LPA and they were worried about needing to do open heart surgery that day. I was sick with walking pneumonia, bought a test from the hospital pharmacy (great tests btw and inexpensive too) and took it. I knew that I needed medications and that there was an unlikely but possible chance I could be pregnant. I was shocked to see that I indeed was. I was excited, but guarded. My fear and worry at that moment was on Kaidence and this possible surgery.

Things with K worked out and the reality of the pregnancy was setting in but then I started have possible miscarriage signs. I thought for sure that this was the case, after all I had McCaden (2 miscarriages) Camden (3 Miscarriages) and then Kaidence. We went in and checked the baby and the tech thought the baby was behind in growth and that the heart rate was low so we rescheduled another appointment 2 weeks later. At that appointment I was searching for the little heart beat flutter I think before the tech was and I found it. I could also tell that the baby was much bigger than the last time. Its heart rate at 8 weeks 6 days was 179. I said a silent pray and thanked Heavenly Father for this gift.

We know that Heavenly Father has a plan for our family and each person in it. We will do our best, make the best choices that we can and walk forward in faith, happiness and gratitude for this gift we have been given. I cant help but feel that it is somewhat symbolic. Part of me feels that it is a bit of closer to everything and HOPE for the future. Our family is moving forward. Yes, life is still full of the 'what if''s' and always will be. But I guess that without the 'what if''s' we would not be thankful for the good of the 'what is'.

So there you have it because like I said it is becoming obvious. Baby #4 is due October 13th and we cant wait!

***** Kaidence is doing well. She is still on antibiotics from aspiration pneumonia. She aspirated while drinking her milk and watching "The Little Mermaid".....go figure. We spent last Sunday in the ER with her. Her labs are looking better and she seems to feel fine. Thanks to those who were wondering.

A BIRITHDAY WISH FOR AN ANGEL!

Happy Birthday to the Little Angel that gave Kaidence her new heart and her new found life.

I never realized that yours and Kaidence's Birthdays are exactly a week apart.! I hope your family knows how amazing they are. I am so thankful that they have allowed us to be a part of their lives. Your picture sits in our home next to a pewter angel statue and a statue of a little girl holding a golden heart. Your smile is infectious. Today we will be sending some balloons to heaven for you....be sure to watch for them. The one with the red heart will be from Kaidence herself. I am sure that McCaden and Camden will find a Spongebob balloon just for you. I wish that I could jump on a plane today just to go and hug you family. Since I can't hug them today, please send them the hug of an Angel, especially to your mommy.

Happy Birthday Sweet Boy! May you have fun running and playing with the angels today!

HAPPY 3RD BIRTHDAY KAIDENCE!

Well today is Kaidence's 3rd Birthday. I can't believe it! Once she got her new heart, time has just been flying by. She is doing GREAT!!!!!

Here are some fun little things about Kaidence:

1) Kaidence LOVES music. Especially 'The Black Eyed Peas' and 'Beyonce'. Yes, you read that right. We however had to get the edited versions of everything because she picks up on things a little quicker than we thought. Her favorite song in Boom Boom Pow!

2) Kaidence has a recently found obsession with the Little Mermaid. She must think that I have it too because she seems to be part of all of my baths as well.

3) She loves to play Dora and Diego. One day I found her hiding in a corner of the dark basement. She told me "sshhhhh" and that swiper was sleeping. Then she will try to yell as she sticks her hand in front of her, "Swiper, no swiping" and the look on her face is dead serious. I can thank her cousin for this Dora behaviour.

4) Her favorite foods are few and far between. However, sherbet ice cream is a love of hers as well as the hospitals hash browns. Kaidence also loves minty gum. In fact she prefers that over bubble gum. Her eating is still very up and down and we use her g tube every night. Lately our eating during the day hasn't been that great, but maybe once she gets over this dang RSV it will bounce back......I hope!

4) She loves to play in her playhouse that she got from Make A Wish. We cant wait to open it up for the spring. Her and her brothers could play out there all day long. Did I mention that she has the greatest big brothers ever? She could watch SpongeBob with them all day long. (this is a picture if part of her playhouse, sorry it is such a bad picture. I have some others but cant find them at the moment).

5) She is VERY independent and insist I leave the bathroom when she has to go potty. She wants her privacy and to have no one around. Also she has to do everything on her own....ok that gets a bit frustrating for her mom.

6) Kaidence has an amazing gift of patience and understanding. Kaidence is fine when we have to go to the hospital, she is so very brave about it all. I will tell her the night before or the morning of that we have to go. She then asks if she has to get owies and I tell her yes. She is not thrilled but she says "ok, have to get owies". She lets the doctors check her out and get her x-rays, echo's EKG and labs usually all without any tears or fight. This has been such a wonderful blessing not only to Kaidence, but to her mommy as well who takes her to all these appointments. It helps to spare pieces of my heart from breaking over and over again.

7) Kaidence started Sunbeams at church this year. She LOVES it! Also this fall in September my baby girl will start preschool.

8) As many of you know, Kaidence got her first set of 'accidental stitches' last month. Such a normal kid thing. We are heading in the 'normal' direction more and more with each new day,

These are just a few things about Miss K this year. She has been very happy and healthy. Her heart is working perfectly within her chest. We have been in contact with our Donor Family and I love the times I get to talk with them. We love them with everything that we are. They are why we are celebrating Kaidence 3rd Happy Birthday this year. It is because of them that Kaidence's life continues and she gets these many opportunities in life. If you are reading this we love you and thank you for giving me my daughter and for giving her the beautiful experience called 'life'.

Happy Birthday Kaidence, Mommy loves you!

A hole in the forhead and stiches for Miss K!

I just think that I need to go to bed for a couple of days. This afternoon I decided to go in the basement to get a quick nap because I could hide from the kids. Mike was upstairs with the kiddos when Kaidence decided to fall and put a gaping hole in her forehead. We are guessing that sh e tripped and hit the corner off the crown molding on the floor and the corner angle of the banister. Holy cow, I have always known that heads bleed a lot but...........it was EVERYWHERE!!! My boys were panicked and absolutely upset, I thought about it though, with all she has been through she was always cleaned up by the time they saw her. They were very upset to say the least. Kaidence had a cut on the top of her head and the hole in her forehead (and I mean a HOLE). We got plenty of stares from people in the ER because blood was still everywhere. Tonight the ER said they set a record for being the busiest and I believe them. We just needed stitches and it took us 5 hours of waiting. Kaidence did great, but was not happy. They had her wear some heart shaped sunglasses while they stitched her up. She kept saying over and over "no owies". They refused to put her out like they said they would if she were 'normal'. They worried about her heart, BUT she has a beautiful healthy heart now. It just still freaks out the doctors that aren't cardiologist, because she has been transplanted. They stitched up Kaidences forehead in layers and we are now home.

Has this week been long, or is it just me? I am exhausted and I am going to bed!!!

The end to our week!

Sorry about the last post. I felt so icky that I just didn't have the energy to post in more detail. I am slowly getting better, and I am SO grateful for that. I just needs a lot of sleep and medication.

Wednesday morning Kaidence had the good old 4AM chest x-ray (oh how we miss those) and then she had her echo later that morning. Both looked good. The stints looked like they were holding. They wanted to keep her there most of the day and then do another chest xray around 4PM. If all looked well then we could go.

So during that waiting time. Mike and I ran upstairs for a 2 hour eye appointment for Camden. We didn't dare cancel, because it took us months to get in. Needless to say, Camden gets to pick out a pair of glasses. He is so excited.

Later that afternoon Dr. Gray came and told us that things still look well and that we could go home. Obviously, we did not need to be in the CICU. I found it interesting that when I took K to the potty in the until she walked by her old room, pointed and said 'my room'. I was shocked! We stayed next door to our old room, in the room that our buddy Ryker stayed in. We thought of him a lot being in there. Kaidence was discharged for the CICU (primary's now has a Cardiac Intensive Care Unit) that evening around 5PM.

So today was a follow up xray to look at those stints. I could see the relief on Dr. Grays face as he told us that everything was still in its place. He was kind. He apologized for the complications this week and said that he knew that it made it a long week of worry for our family as well as all of her doctors. I have a great sense of relief today. We will follow up in cardiology in 2 weeks and check the blood flow to be sure everything is working and that platelets aren't sticking to the stint since it is out in the open. She has been started on baby aspirin to try to help prevent that from happening. Dr. Gray will try to expand the part of the stint that is hanging out of the LPA in her next heart cath in about a year. Other than that no other restriction expect going to Disneyland to ride the rides for 3 months. Shouldn't be a problem since we had no plans to go and do that in the first place (I wish we did though).

So here we are. The week has been long and once again tested our faith in many, to do what was best for Kaidence. This is honestly the first time that I did not know what direction was best for Kaidence. Would surgery be better than a stint that looked unstable and one stint that wasn't even needed in her RPA? I didn't know. I just knew that we turned it over to the Lord, He would know what was best and we accepted that. Thank You for all of your prayers, phone calls and concern for our daughter. Thanks also to my great neighbor and mother in law for babysitting the boys, My Sister for bringing dinner and my other neighbor who brought me a loaf of bread and my Pepsi with a Lime ( I needed it). And MANY thanks to all of our other family and friends for their love and support. We love you all!

HOME!

I only have a second but wanted to let you know that, we are home. Things looked stable with X-ray and and echo. We will check again on Friday. Thank You for all of your prayers and well wishes. We once again feel that the Lord has blessed our family.

This K's Dad. Not Telle as usual. I thought I would take a minute and post a quick picture of K back in the PICU. Feels different being here on a visitors visa. Strangely it feels kinda like home. Security knowing she is in good hands. I felt compelled to post this picture to compare with the one on the blog of her Berlin heart. Two years later. We hope and pray everything will work out right for our little K. There is another that could use a few prayers. K's mom is not feeling well and was kicked out of the PICU. She is a little frazzled and doesn't like it when she is not here with her angel. She could use a little comfort and good vibes her way. Hopefully a night of sleep will help her get feeling better. We love ya all and thanks for the support.