Happy 5th Birthday

Today is Makenzie's birthday and what a wonderful day it was 5 years ago when she was put into my arms. The moment I looked into her eye's I knew she was a special girl who was sent to me from heaven. The past 5 years it has been a joy watching her grow into a little young lady who is an amazing little girl who has come along way with what she has gone through. And I am so thankful that she is still with us and to be able to spend every moment with her, to watch her grow. She is a smart girl I am looking forward to making Birthday cakes for many, many, many years for her and to continue watching her grow and learn and become the best woman she can become. I am defiantly the luckiest mom to have such a wonderful daughter who is loving and caring and enjoys being a kid. Happy Birthday my Skinny Minnie. Mommy and Daddy love you so much and is very proud of you. Hope you have a miraculous day. Love your Mommy

Changing Clinic on us Ugh

Clinic was last Thursday for Makenzie I am just slow at blogging. We got there at 7:30 in the morning got her blood drawn and didn't even have to wait for her echo they came and got us right when we sat down in the room. Unfortunately it took the Echo tech an hour to do her echo. Luckily we were able to watch Bolt, and we were able to watch half of it cause it took him forever.
We then were able to see Michelle. Everything looked perfect her echo was perfect and I forgot to mention that I watched her echo and her heart rate stayed in the high 80's and 90's yeah. No dipping and bouncy around yeah. So maybe it was just a fluke thing going on last time. But I still have my guard up. Checking her heart every night.
Before we left Michelle said we will see you in 2 months. My reaction was "what 2 months no one talked to me about changing things around on us. I am not ready for 2 month check ups I like the reassurance of her getting checked every month". Michelle said that she is doing good and there is no reason to keep coming every month. Me "I new you guys wanted to extend the halter monitors to every 6 months but not spreading her clinic days out". Talk about taking things slow for us. Not all at once people. One thing at a time. But I guess not. It should be a good thing, I know I should be good with every 2 months cause she is doing so well and staying healthy. For that I am thankful I don't want to come off as ungrateful that she is doing good I am so happy and it makes my heart so full of joy that she is staying healthy and she can be seen every 2 months. But it is still a little hard on me because I like being reassured that she is doing well.
So her next appointment is January.
We then started walking to the cafeteria cause we get breakfast every time she has clinic and we ran into Emily and I asked her about every 2 months and she said she is doing well and I just started crying because I hate the winter now cause of all the germs and kenzie getting sick and her rejection last year was really hard on us and her almost losing her was something I don't ever want her to have to go through. I know I maybe paranoid but I like the reassurance of her heart and body doing well. I could probably have her go every month for the rest of her life just to no that she is doing well. Emily gave me a big hug and said if I ever need anything you no that you can always call or just call for moral support. Emily is defiantly my favorite coordinator here in Utah and Makenzie's. But overall Carrie in Denver is her most favorite.
Anyways later that day Michelle called and said her Prograf level is super high 17 which it is suppose to be between 6 and 8 so we got to skip her med that night and drop her dose down to .57 Kenzie was pretty excited that she only had to take one of her meds that night.
We had to go back to PCMC on Monday to get her levels rechecked and again it was high but lower than before it was around 9 so they lowered her meds to .56 and we get to go back on Monday for another level check so we will see how that goes. And then we wont be back until January Ugh. But I am thankful that she is doing so well that they can extend out her visits. But again it is still hard on me.

Take a deep breath

Got all of the result back from Makenzie's test. Yesterday she went in and had an EKG done to check if Dr. Everitt can trigger Kenzie's Brady Cardia by pushing on her chest but of course her heart rate stayed in the high 90's low 100's. So that test showed nothing then she had a X-ray done to measure her pectus to see if that is causing any breathing or her Brady Cardia. Then she got a Pulmonary test done which she was a little nervous and had to have Braxton try it first then she was ok with it. She liked blowing out the candles.
Now for the results....The Pulmonary results came back and showed that she has mild restrictive ventilator defect. Which they say that it is ok. doesn't sound like it but they are not worried.
The Holter Monitor results are The high was 162 the average heart rate was 92 and the low was 52. ok I can breath a little. Her pauses have improved meaning her heart rate had less pauses. But she had 8 premature ventricular contractions, which is a skipped beat but they say it is common in a lot of people even healthy people. They were not all in a row so they said not to be concerned. It also showed none of the signs of her Brady Cardia like she did on the echo last Thursday where it was all over the place.
Holar test which is the X-ray on her pectus the extreme is 5.5 and Kenzie is 4.7 which is high so they want her to see an pediatric general surgeon that deals with a lot of kids with pectus to see what he thinks about it and so he can follower her. The good news is that none of the test's show that her pectus is not affecting her breathing or heart.
But nothing explained why her heart was dipping low and bouncing back up. Maybe it was just a fluke. I feel a little bit better and can now take a deep breath, and continue to pray that she will stay healthy and strong and the Doctor's will do what they need to do to keep her healthy. Thank you for all the prayers for our little girl.

Scary Clinic Day

Today was clinic day another early morning but always worth it to no that Kenzie is doing ok. We got there at 7:30 A.m to get her blood drawn and what a mess that was. First the lab was closed on the first floor so we had to go to the after hour lab on the second floor. We waited for 5 min just for a phlebotomist to take us back down to the first floor to draw her blood. Then on top of that it took 1 phlebotomist 2 tries and didn't succeed. She then said she is going to page the I.V team but it was already 8 o'clock and she needed her meds. So I asked another phlebotomis to take a look and she did and got it on her first try. 8:25 a.m she finally got her meds.
She got an echo which I always watch her heart rate when she gets it done and this time I was nervous, at first she was doing well and her heart rate was staying in the 90's which I love to see then it dropped in the 80's and back to the 90's. And dropped to the 60's for a second and bounced back up to the 80's or 90's then dropped into the 40's and back up again. I know her heart rate lowers like that when she is asleep cause she is diagnosed with Brady cardia . But I have never seen it do that when she was awake on the echo her heart rate was always steady in the 90's except last month was 80's. But never low like that.
I asked Dr. Everit about it and she said that she was having lower heart rates and that they want to do some tests on her. They want to see if it is caused by her pectist which is how her chest indents in to see if it is putting pressure on her heart. So on Tuesday we get to go back to PCMC and get a few test done to see if they can get some information on what is going on. She has to get a pulmonary test and X-ray and an ECG
They also put a halter monitor on her and wanted to see if she can get her heart rate up like a normal 4 year. So they had me get her to run across the bridge that connects from PCMC to the U of U to get her heart rate pumping. She did not like that at all, so through out the day they wanted me to get her to do exercises.
Other than her low heart rate her echo looked fine her heart is functioning well. So I hope on Tuesday we can get some answers. Please keep her in your prayers that the Doctors can figure out what is going on with her heart and that she will stay healthy and her heart will keep functioning well. Thank you for all your prayers

Halter Monitor

I got a call from Emily today Makenzie transplant coordinator. She said her results for her haltor was read and that Dr. Everitt said the results looked good. She said the longest pause was shorter than last time. Which is good news, then I asked her what her heart range was. She told me that her minimum was 43 the average was 83 and the maximum was 133. when I heard those numbers coming out of her mouth my stomach dropped. Each number from 2 months ago dropped almost 10 beats. I don't like low numbers it scares me but Emily said that Dr. Everitt was not worried but they will send the results to Denver and see what they say about. I don't no if my stomach or heart can take those numbers especially if they keep dropping. Luckily she gets a halter every 2 months and goes to clinic once a month to keep an eye on her. Please continue to keep her in your prayers that her heart will stay strong and the doctors will do what they need to do to keep her safe and healthy.
Clinic also went well her Echo looked good and her levels also were perfect.

I am not good at titles but just a little up date on Makenzie she is doing amazing I love the summer cause she does not get sick as much. She has been loving the summer and playing outside with her friends.
Luckily she does not start school this year I am so not looking forward for her to start kindergarten I am still debating on whether homeschooling her or public school. I think I am going to have a harder time with separation then she will even though she really does hate to be away from me.
This summer has been the first time she has really had chores since her brother and sister went home with there mom for the rest of the summer she has picked up the slack and has been keeping the living room cleaned every morning I just have to ask her to pick up stuff in the living room and she does it sometimes she says " but i didn't do it" but in fact it is her clothes and toys on the floor. But she does it and it helps out alot so we can spend time playing or doing preschool.
She is such a sweet girl she has her moments though were she likes to bug braxton, but I don't think any mom can get away from that if there a siblings in the house. She will be turning 5 this year. She is growing up so fast but I am so thankful that she is still here with us and I hope there are many many and many more years were I can brag about her, play with her and watch her grow into an old lady.
I love you my Skinny Minnie

It has been a real busy week last week but I finally got a hold of Makenzie's doctor about her Holter Monitor and it looks great. Her High was 140 her average 91 and her low was 52. She had no pauses which is great. She is doing so well that she is loving summer and loves playing outside. Life is great and I am so thankful that she is still here with us to. I love her with all my heart.

I finally got a hold of Carrie and got Makenzie's halter monitor results back and her max heart rate was 148 her average was 109 and her minimum was 42. She had not pauses which last time she had a few so that is good. Carrie said all the numbers are reassuring and Makenzie seems to be doing well and loves summer time.

Summer fun

Alright life is great my kids are healthy and summer is here good bye ugly nasty germs. I hope, atleast through out the summer then we start all over when winter comes around.
Kenzie had clinic last Thursday and all went well her Echo looked good her heart sounds great her med level was an 11 which it is suppose to be between 6-8 so they lowered her dose to .55 instead of .56 so I have to take her back for labs in 2 weeks.
We are also waiting for Carrie to give us her holter Monitor Results from last month. She has not been in the office so we will keep waiting.

This year Makenzie has excelled a lot in learning she has mastered all her letters, writing and reconizing them. She has also learned to spell the "AT" words like cat, hat, sat, mat, rat, fat, and so on. We are working on sounds which has been hard for her but she has learned a few. Her newest accomplishment was memorizing the Pledge of Allegiance in a week.

I started doing preschool at the beginning of the year with the kids at home and I wanted to continue during summer to keep there minds fresh. But there is so much going on and it is hard to keep them inside with such good weather, that I have missed a few days. So hopefully I can keep there minds working. And they don't relapse.
I love staying home with my children it is my life and I am so not ready for them to go to school. Like some people I hear "oh man summer is here school is out, I can't wait for school to start again". Not me I love seeing my children grow and watch them develop and watch there personalities erupt. Waking up and spending the whole day with them is priceless to me and I love it.

3 year Anniversary

I wanted to post yesterday but it was so busy that I did not have time.
Yesterday marked Makenzie's 3 year anniversary of being a heart transplant patient. We are hoping there are going to be many more anniversaries that we can celebrate Makenzie's life and honor her donor. What a roller coaster it has been with all the ups and downs that we/she has gone through. But we could not ask for anything more, she is still here with us considering we almost lost her last year. Makenzie is an amazing little girl who I am so thankful that she is my daughter. Even though she is so little and very shy, she has such an impact on people. She has come along way over the 3 years. She is writing and has learned to spell her name. She also has learned to identify her alphabets, shapes and colors. We are now working on the sounds of the alphabets so she can start learning to read. We are also trying to teach her to be more social not just with kids which she is doing pretty well with but also with adults.
We could not have taught her all that if she didn't get a second chance. And for that we are so thankful for the amazing family that decided to donate there loved one's organs to save my daughters life and who knows how many others there might have been. Thinking everyday how hard it is to have lost someone especially a child and have to decide a very unselfish act at the most hardest time I couldn't even imagine, to donate there loved one's organs to save another child so they could have a second chance at life and so there family can enjoy another day with there child.
There are no words to thank the family but to just honor them by having Makenzie live a normal life and keep her as healthy as we possibly can and teach her how important it is to take all her meds. So we can show how much we appreciate what they have done for us and her. Even though we do not no the family or anything about the donor our hearts go out to them and again thank them for there generous gift.
The gift of life.
Be a Hero Be a Donor

Home away from Home!!!

Monthly visits to the doctors, Watching your child cry when the nurses take them back to the OR, worried about germs, rejection on the back of your mind when she gets sick, making sure they take there medications on time daily, Yearly Cath's.
Life as a Heart Mommy can be very mentally exhausting ( I cry about everything now) . But I am sure it is a lot harder to be a transplant patient, and having to go through it all. But I would not change my life or my daughter for the world. She is one of the best thing that has ever happened to me (including my family of course). You would think I would say why me I can't mentally take care of a child who needs constant care, but she has brought our family closer then we ever imagined. We have gone back to the church, got sealed in the temple as a family. Which was far from our minds a couple of years ago. And the Lord gives you what you can handle, and I am guessing he thinks I can handle it. So far I believe I have done the best I can to care for her and getting her the best care I possible can.
So off to Denver we go for Makenzie's yearly Cath. We left for Denver on Thursday May 6th to be there by Friday Morning. An 8 1/2 hour drive with two toddler's in a back seat of a saturn was actually not as bad as we thought it was going to be. UNTIL we got about 1/2 hour into Colorado we start hearing "are we there yet" "are we there yet". But we made it safe and sounds. We were lucky enough to get into the Ronald McDonald house in Aurora, which is an amazing charity if I might add
.
Friday we had to check into the hospital at 10:30 a.m, get her an Echo and an EKG. Then from about 11:30a.m to 2:00 p.m we just laid in her room while doctor's and nurses came in and out of the room checking on her until she was ready to go back to the OR room. They finally gave her some versed which made her a little loopy which was cute but once they came to get her to go back she just started crying and hanging on to me. And I know that I should be strong for my child and not cry but I did, tears came rolling down my face. Just thinking I am letting my child into somebody else's hands and I am not there to watch her to make sure she is ok.
About 30 Minutes later after they came and got her I get a phone call from the OR room telling me that she is doing good. It took the doctor which was Dr. Pietra a little longer to get the Cath in her leg but she is sedated and is doing great so far.
It was really nice to see Susan, James and Allison there also. We were able to sit and chat with Susan and James in the waiting room while Allison was back in the recovery room.
After about an hour of waiting we get another phone call saying they are just finishing up and Dr. Pietra will be out to talk to us. So about 20 minutes later they came and got us to go back to the recovery room to see Makenzie. She was in tears wanting mommy so I gave her a big hug and told her I am not leaving you again. So we just waited for the Doctor to come to talk to us, so during that we sat and watched movies and tried to keep Makenzie laying flat for 4 hours, it is a lot harder then you think.
We finally got to talk to Dr. Pietra and Carrie, they showed us pictures of her heart the function and the squeeze. The numbers all looked good her Pressures were awesome no damage to her coronary arteries. So all in all she got a good grade. She did amazing and we are so proud of her. She was finally discharged at 8 p.m and we all went back to the Ronald McDonald house and just crashed into bed.
Carrie called on Saturday with the biopsy results. And said she was a 1R which means that there is a little army of lymphocytes in her heart. We were hoping for a 0 which means nothing is going on in her heart but they said that a 1R is next to nothing. It doesn't sound that way to me but you have to trust in the doctor's and I have talked to a few people about it and they said the same thing. So we can come home, so it must be nothing to worry about or they would have kept her. On Saturday we got the chance to go to the Denver children's museum which the kids loved they loved the grocery shopping part the most. Then after we were able to go and visit grandma Judy (a lady we met last year at church when we stayed for 3 month) It was really nice to see her.


On Sunday we got to go to church and see all the nice people that helped us last year. I love that ward and the people in it, the bishop is an amazing man, and his wife is so sweet.
We finally left after church to come back home another 8 1/2 hour drive which again was not that bad I got a little car sick about 20 min away from home but we made it back home around 10:30 p.m.
Carrie called me on Monday with more news they want Makenzie to take steroids to fight off the army that is in her heart. And a really disgusting medication. It was not the news I was expecting so it made me cry; again, told you an emotional wreck. Luckily she only has to take it for 11 days so hopefully it works. We get to go back to Denver next year for another Cath.
Thank you all for the prayers that were sent her way. She is an amazing daughter and we love her so much.
BE A HERO BE A DONOR!!!!

Holter Monitor

I just got the results from the doctor's about Makenzie's Holtor and Michelle said that the max heart rate was 144 and the min was 48 and that is when she is sleeping, and her average is 91. She had a few pauses, but there were 2 pauses that were 2 seconds or greater. Michelle said that is good for her. I am a little nervous because the last one before this one her max was 144 her min was 55 and her average was 102. But Michelle said it could be that she is growing. Still makes me nervous though. But Makenzie seems to be doing great with those numbers she is up and running around like a 4 year old does.

Today started off early as every clinic day does. Makenzie had to get her blood drawn to check her levels, and for the first time in who knows how long, she was terrified of the needle she was struggling so hard to keep her arm away from it. It broke my heart to hear her cry like that, I have not seen her that way for the longest time. Even though She has the right to cry if she wants too she is 4 years old, it hurts me to see her that way. On the other hand it is sad that she is used to getting big pokes when they come at her with a needle and she doesn't cry. Either way it is hard to see your baby getting poked at once a month. Whether she cries or not. But it is nice to know that she is doing good and her medication is working.
Her Echo went well Dr. Norlin said her heart is functioning well and she sounds great. She also had to show off and write her name for her doctors it was cute. They were impressed.
She did get a Halter Monitor put on so I won't get the results back until next week but I hope everything sounds great and the caffeine is doing it's job and keeping her heart pumping well. I will update the results when I get them. She also hit the 27 pound mark way to go Makenzie
And as always thanks for all the thoughts and prayers that are sent Makenzie's way she is an absolute treasure in our life. And I could not imagine life with out her or any of my children they are the greatest gift's I could ever receive.
Be a Hero Be a Donor!!!!!

Camping Trip

We went camping last week to Arches it was way fun. To be honest I was really nervous about taking Makenzie camping it has been the first time since her Transplant. Before we left to go camping I keep checking to see if we had all her meds I was so nervous that I would leave it, but for the 3rd time checking we finally left. I told Tyler that we should say a prayer before we go that we would be safe and that Makenzie would stay healthy and strong. Makenzie had fun getting dirty and playing in the dirt, I for one was not enjoying watching her it was hard for me to just let her be a kid and get dirty with germs. But a few days later I relaxed a little and just let her have fun with Braxton and Jackson. Unfortunately she ended up getting diarrhea so i kept her in pull ups the rest of the time. But luckily it went away in a few days. But to be honest I was nervous when she ended up getting it, cause diarrhea could be a sign of rejection and that is always on my mind when something happens to Makenzie. It was a fun family outing for the weekend and can't wait to do it again next year. I will post picture's when I get my picture's off my camera.

Hi Hoe Hi Hoe off to clinic we go

Makenzie had clinic on Thursday. She goes once a month since her rejection last year which I don't mind it makes me feel comfortable to know that she is doing well. This clinic went well it was a little slow but her echo looked normal and her prograf level was a little low so we had to up her dose. She also had a Halter Monitor on 2 weeks ago and the results came back for that and Dr. Everit said it has been the best one yet. Her minimum heart rate was 55 when she was asleep and her high was 144, so that makes her average heart rate 102. She had a few pauses but they said the longest one was 2 seconds I believe. But they kept her caffeine the same dose. Her doctors probably think i am crazy because we are supposed to go camping in a few weeks and I asked them if that would be ok taking her and should she been seen before or after we get back and they looked at me and said you are funny Monica. They asked me what makes you feel comfortable and I said before and after. But she will be seen after. Yes I am a little paranoid but we had our fair share of close calls and I do not want to see Makenzie go through that again selfish maybe but I don't care. She is doing amazing. And I thank my Heavenly Father everyday for that and of course her Donor Family and what an unselfish act they chose to give life to others.

A long week

Last week was very long it started out perfect. It was the week we were going to get sealed as a family, nothing was going to get in our way. Bamm then on Tuesday morning Makenzie sounded like she was having a hard time breathing around 6:30 a.m I figured I would just wait until PCP opened up but it was around 7:00 a.m and she was saying her ribs hurt on her left sideI checked her heart rate when she was asleep and it was 133 which is really high for her. So I decided to take her to the ER at PCMC. When we got there she had a fever and her heart rate was 177. So they took blood test and sucked her nose and got test done on that and it came back that she was RSV positive. My heart just stopped and did not want to her any bad news we had a hard year last year with her and I could not go through that again. But the doctor came and said they were going to admit her to the hospital. It was hard to see her back in the hospital. But I know they would be able to help her to get better.
They had to put an IV in her arm to run fluids through her body. Through out the hospital stay she had many fevers. Which was treated with Tylenol. But everyday she seemed to improve everyday. She got a blessing from our bishop. And the next day she seemed to be doing better Tyler and I got sealed on Thursday it was really hard getting sealed without our kids but i know
we were doing the right thing well that is what Tyler was telling me anyways. I was wanting to postpone it but Tyler did not so we went through with it and it was beautiful but really hard that I cried I think mostly because my kids were not there with us. But then on Friday Kenzie was doing much better and Dr Norlin said It was looking good and she may go home today and around 3:00 P.m They said that she was getting discharge. I was excited so I called the Temple to see if we could get the kids sealed to us on Saturday and they had an opening so Saturday at 7:00p.m our kids were sealed to us for time and all eternity and it was amazing to see them all dressed in white all innocent and precious. And I love my kids with all my heart and I thank everyone for all the prayers for Makenzie.