Bless Her Heart

Paper vs. Plastic

2012-01-22T22:09:00.000-08:00

(I finally got the pictures added but this post was written a few weeks ago.) We had a fun day last Friday. To tell you how it started, I have to go back to the week after Christmas. We were at a friends party when one of my neighbors told me that she saw Macy's picture on their paper bags. I was confused at what she was saying. I had no idea that Macy had entered a contest at school for Harmon's Grocery Store. I went home and asked her if she had won a contest for Harmon's. She said she didn't know if she won and that it was probably one of the other Macy's at the school. A few days later, we managed to get over there and low and behold, there it was with her name on it. M gave the silly stern, trying not to smile grin. So her. I could tell she was so excited to have won.
They got back to school, and a few of the other kids had seen it and were so excited for her. The class of the person who won got to have an ice cream party provided by Harmon's. So on Wednesday I got a call from her teacher that Harmon's would be here to present her the award and the party. On Friday we came to the school and before we walked in, I asked the presenters a little about the contest. They do four contests a year and the different stores take turns hosting the contest. This was Farmington's first contest since they have been open for this. The schools around it then submit their entries. At their school, they did it in their art class and the children got to draw a picture. The rules were that they could only use three colors and the lettering had to be so big.

Macy with her teacher and the Harmon's representative.

The kids thought Claire and Ellie were so cute!

We had to get some too!

Grandpa got to come and enjoy the festivities.

The kiddos were super excited for the ice cream party!

Macy, holding back her excitement.

Macy with her teacher, Art teacher, and Harmon's reps.

It was a special day for her and she had a fun time being the center of attention for a few minutes. They presented her with this framed picture of her bag and a twenty five dollar gift certificate to Harmon's. The kids then got an ice cream sunday party and cookies. It was a fun day! Now when you go to Harmon's opt for paper vs. plastic and take a look at her Winter Wonderland!

The Gifts

2012-01-11T16:03:00.000-08:00

Christmas is one of my favorite times of the year. I am amazed every year when I see miracles happen. We too have been extremely blessed when it comes to others. Usually anonymous. When my daughter was four we were sailing along in life. Things were going well. My daughter taught me a great lesson that year. She saw a need and came to me with that piggy bank and asked if we could go take it to someones doorstep and leave it for them. It couldn't have been more than ten dollars but it taught me a valuable lesson of selflessness. For all she new it was a hundred to her. But she felt that this other family needed it more. Than fast forward to the Christmas of 2009. We had spent a week in the hospital for an illness that most people do o.k. with, but for Ellie and her weak heart, I watched her struggle for every breath and wondered if this was how it would end. We left the hospital exhausted and beaten. I could care less if Christmas happened. In fact, I was hoping it would just go away. With M and A being seven and five they just wouldn't let me forget. As Christmas neared I was fearful of what Christmas would bring. We had spent the summer coming up and down from St. George and the bills were piling up. It was amazing how fast your life savings can disappear when life decides to take a hit or two or three. Then came a knock on the door. There was a jar of money on the front porch, then another knock and another. I was amazed at all the anonymous gifts that helped us that year. We ended up having a wonderful Christmas after all and it helped to pay some pressing bills at the time. It changed my attitude around and made me so grateful for the people in this world. It was amazing to know that they thought of our little family. We were blessed and would like to Thank those that so selfishly gave when they could have kept that money for something great. We only hope to pay it forward someday. Even if it is ten dollars in a little piggy bank. It makes me want to serve others any way I can.

So I am jumping around a little bit. In 2007 we received an amazing gift from God. It was our little girl Eve. She was not meant for this earthly life and was too perfect to stay. We got to hold her for a few hours and gave her a name and took molds of her hands and feet. I felt the angels that day comforting us as they took her home. That Christmas a Family that had chosen a family to do a sub for Santa every Christmas had heard of our sweet Eve. They decided that year the family would be ours. And instead of presents, they would give the gift of a Grave Marker for our little girl. Every time we went to her place, the grass was fainter and fainter and soon blended in as if the grass no longer had been disturbed. I cannot tell you how much that gift meant to us! It gave her a place we could go to and for us was a priceless gift. I know they never saw our eyes light up and the little ones jump for joy but I hope they know how much that gift meant to us. I think about that selfless love a lot. She has a place that would have taken a while for us to come up with and helped in the healing process to not worry about how and when we get her marker. I feel heartache when I see a new grave. I want everyone to have that same opportunity that we have.
We still see random acts of kindness from those we know and those that remain anonymous. We loved going to California this year and could not have done that trip with out those loved ones who helped us get there. We love you and are indebted to you. Sorry for rambling, but I desperately want those that have thought of our family in thoughts and prayers have a special place in our hearts.

Surgery Day! (Not for Ellie, but Claire)

2011-12-10T20:16:00.000-08:00

Well, I'm still trying to figure Blogger out, so this is this day in a nutshell. But in total random order. (Because I'm not sure how to switch them around.) If you know how, leave me a comment.
Ever since Claire was born, she sounds like a Pug Dog. She breathes incredibly heavy and has a terrible time sleeping. She would wake with apnea spells during the night so it was determined that her adenoids which were extremely large, needed to come out. Along with that they did a Bronchoscopy and Laryngoscopy sp? She also had been diagnosed with laryngomalasia since birth, floppy airway. So this was hopefully going to get her on the road to recovery. Well it worked, for three days and then we are back to the same rough chronic cough and bad nights. A biopsy was taken and she does have gastro reflux:( We started her on Zantac and we will have to see what else we can do when we see the Gastro Intestinal Doctor three months out! We have survived 20 months of no sleep, what's another three, right?

As bad as surgery went for Ellie, this one went really well. I still did my surgery routine. I can't eat the morning of except for a Coke. I am superstitious about what I wear. I can't wear eye makeup in case I cry. I must have my LIVESTRONG bracelet. That helped me get through the surgery from Hell with Ellie. And I spend every moment the night before trying to memorize their face and their laugh etc. just in case. Silly I know, but it works for me. I still have nightmares slumping to the floor and watching everyone race to Ellie's MRI room where they called a CODE BLUE over the loud speaker. I remember thinking, is this how it ends? No parent should stand by and watch their child be resussitated. Bad Memory, anyway, this one went the way they should go. It still rips my heart out to hand over your child and part ways. It never gets easier, anytime they are put out. I did stay at the hospital and actually left to go to the cafeteria and eat with Nate. I usually escape the hospital, just in case they call a code. Hate the over head speakers. I jump every time. While we waited, they gave her some Versed. Love that stuff! With in minutes she was bobbing her head and acting dilirious. Hilarious!!! She would drop her head and I would say, " say cheese". She would slowly lift her head and say, "cheeeeeeeeeeeeese". It took about an hour and when I came back, she was super sleepy. So we let her sleep until she popped up about an hour later sat straight up and was wide awake. Also funny, if you were there.

This was Claire on a high running laps around the surgery waiting room. She hadn't clued in that we were there for her instead of Ellie.

This was her waking watching Tangled. She wanted her I.V. out so bad. They put it in after she was asleep, which was a pleasant surprise.

This was snuggle time with Mommy. She was pretty much on high after that.

See, I told you they are out of order. This was her when I first came back to see her.

Soooo very sleepy when we first saw her.

Before surgery, running laps still. She loved running this doll from the horse to the high chair and back.

She thought she was in heaven. Watching movies all day and eating chocolate pudding in bed.

It didn't seem to phase her until three nights later. She actually slept for three glorious days.

Don't worry, she is back to her toss and turn, scream in the night self.

You Know Your A Cancer Mom when...

2011-12-06T14:42:00.001-08:00

The other day I was changing Claires diaper and I noticed some nasty looking bruises on the back of her leg that went up to her back. Immediately my mind raced and went into worst case scenario mode. "Oh no, could this be Leukemia?" I thought to myself that she had looked a little pale lately. She has the cutest pudgy belly so then I thought, could she have a tumor in there? My mind raced. Surely cancer can't hit the same family twice. Then I started to plead with the lord that this not be cancer and that I could not handle having another child with a serious illness. During the two minutes, I debated calling my Oncologist and my heart beat began to race like it did when they first told us Ellie had a tumor. I was starting to get physically ill when I took a wipee to the bruise to get a better look. To my astonishment, the bruise smeared! It wasn't a bruise at all, just a little girl that needed a bath and one embarrassed mother. I try not to do it, but I've diagnosed everyone I know with either cancer or a heart problem at some point. We have gotten worst case scenario not once but twice so forgive me if I recommend that your child go see a doc.

The First Half...

2011-06-15T21:10:00.000-07:00

Phew! Today is over and we made it. I get so worked up over these MRI's. I think it's just from her going under general anesthesia, because we are well aware of the stunts that Ellie has pulled on us. They usually have us go through same day surgery due to her history. It makes for a really long day! We happened to be sitting by a family that was getting ready for an open heart surgery. I could see the anguish in their faces. It made me flashback to those times we were anxiously awaiting Ellie's surgery. They asked us about her heart surgeries. I didn't tell them about how Dr. K came in twenty minutes after starting a six hour procedure to tell us that they were aborting the surgery because her heart stopped and they had to revive her. I leave some details out sometimes for the sake of others. I wanted to make there pain go away and make it all better for them because we've been there.

I laugh because every time Ellie comes out of anesthesia, we never know what we are going to get. Angry and hysterical, so sleepy that she can't wake up, giddy or sad. Today she was sad. But she seemed to snap out of it faster than she ever has. She ends each time with on a high though. She runs around like the Tasmanian Devil until she literally just crashes. From every hospital stay, she gets on a mania. It's hilarious! Her blood pressure was really high afterward and her heart rate was in the 180's at rest. They were really concerned but because they had us hold two of her doses to get a true blood pressure reading, they felt like we could go home if we got her meds in before we left.

Good News... we got a call from Oncology, and the preliminary results of the tumor is that it is the exact same size as the last scan. We were really worried that it was growing from her eye drooping more. They used the word Stable which is good. I would like to here N.E.D. which stands for No Evidence of Disease, but hopefully that will be in our future. We will be meeting with Dr. Lemons next week to know further. We will her from Michelle tomorrow because Dr. Everitt is out of town. Wahooooo!!! I think I will be able to sleep tonight.

A Cure for Ellie...

2011-06-10T20:57:00.000-07:00

It's been a good couple of months for Ellie. She escaped the winter time fairly well. She did get approved for the lovely synergis shots which I think helped even though it is pure torture to watch her get every month. They are thousands of dollars per shot so we were grateful that she was approved for a second year. We did a pretty good job keeping her out of public and I think that helped a bit. It was funny when spring hit and they got to see Ellie and Claire again. Neighbors were amazed to see them all grown up and "big".

Claire and the rest of us did not fair so well though. Claire had a double ear infection every month and her ear drum burst in April. Who knows if she will end up with tubes. Let's hope the summer gives her some relief. So far so good, knock on wood.

Ellie had her appointments at the end of May. Now when we go there, it is such a welcoming place for us. We ran into two of our cancer cuties before we got started. Then as we were checking in we ran into our heart buddy Mason. Our echo tech. knows us now by name. Barbara in cardiology, comes in every time to do our EKG's and blood pressures and Ellie knows the routine and is so very comfortable with it that she acts like a pro now. Is that a good thing or a bad thing that we feel that comfortable there. Anywho, the end result is that her valves are leaking a little less. Wahoo!! The only thing that worries me is that they didn't up her meds. And it seems like every time they don't do that, the next appointment, they are leaking more. We know that her valves will need to be replaced at some point, but the longer we can hold off the better.

On the tumor end, I have been internally torn on if her eye is worsening on the ptosis and miosis. (Drooping and pupil size). Ever so slightly. But enough that three people mentioned it to me without me saying anything. That was my cue to contact Oncology and we are doing a MRI on both her heart and tumor on June 15. Aughhhhhh! You know how I hate MRI's but I know it needs to be done to know where to go from here.

That leads me to this video that was done by the most amazing people. Thank you!! It is a video of all Utah kids with cancer. We know and have met most of the kids in this video. Please help us fight childhood cancer by joining our team. You can walk with us on July 9, 2011. Ten dollars a person, children are free. Or you can virtual walk if you can't make it that day. Anyway, we would love to see you all there. We would love to see any of you heart moms too:) Ellie appears a couple times in the video so look for her. Thanks again for all your thoughts and your prayers on Ellie's behalf. We feel them and are so appreciative of them!

Welcome. I am participating in The Salt Lake City, UT CureSearch Walk to raise funds for children’s cancer research. I have pledged to raise money for this devastating disease. With your help, I know that I can surpass my personal goal. Please donate. It will make a difference.

The CureSearch Walk celebrates and honors children whose lives have been affected by children’s cancer, while raising funds for the lifesaving research of the Children’s Oncology Group. This group of medical professionals treats more than 90% of children with cancer at over 175 hospitals in the United States. These experts provide world-class care in communities across the country.

Every day, 35 children are diagnosed with pediatric cancer–7 of those children will not survive. Cancer is the #1 cause of death by disease in children. Although the cure rate is now 78%–up by 30% in the last 20 years–it is not good enough. Our goal is a 100% cure rate.

Questions? Contact walkinfo@curesearch.org

Star Struck...

2011-02-02T21:58:00.000-08:00

This is my nine year old. She will be ten in a few weeks. Crazy to think that I have a kid that old. A little back ground on us, we belong to the Church of Jesus Christ of Latter Day Saints. And the other day we went to eat at the good ol' Chuck O' Rama with Nate's Parents and sister and brother-in-law. We were seated and low and behold Henry B. Eyring and his family were eating at the table behind us. He is the first councilor in our church. Next to Thomas S. Monson who is our Prophet. Needless to say, we were on our best behavior and Macy and Adrie were excited to see him. Of course we didn't want to bother him while he was eating and everyone else seemed to be paying the same respect. The girls were so excited and asked if they could say "HI" to him but I told them that now was not a good time. So as he was leaving, a handful of people had surrounded him to shake his hand. Macy took this as her opportunity and got up on her own accord to join the group. Being the only child, she was getting aced out and realized that she would not get through the group to shake his hand. She sheepishly came over to where I was at (getting dessert of course) and acted like she was on her way over to me anyway with a look of discouragement. President Eyring saw this and followed her and asked to shake her hand! This absolutely melted my heart along with hers. She talked about it for days about how he shook her hand. I was so grateful that he noticed her because it totally made her day. And if you know my shy Macy, this is not something she would normally do.

Randomness...

2011-01-13T22:25:00.000-08:00

This was an exciting moment for me. Ellie has not watched T.V. at all, and for about ten minutes, I caught her soaking it in. This would be useful for echos and other moments that even ten minutes here and there would be priceless. I know some of you are probably thinking that it is totally wrong to have our kids watch t.v., but it would be nice for a few minutes in a day. I just think this moment was so cute with Claire even being glued to the t.v.

My girls usually start every morning off with a bottle. Ellie's has one of her meds in it so that's why she still drinks a bottle.

"She is nick named "Smiley" for a reason. She is so proud of her accomplishments.

One of the very few with them all looking at the camera. I took about two dozen of this pose and this is the best I can come up with.

Meeting daddy for lunch. Ellie has to have a hat on just about everywhere we go. She's especially attached to this blue one. So if you see us and it doesn't match, no I am not color blind.

Claire wearing an adorable hat her cousin made for her.

Wow, those pictures are totally random, along with this post, but what the hey! It's been a while I know, but I do intend to go back and fill the events of the last few weeks. I have jotted down all my days of being thankful, I just need to get them on the blog. It's been a little crazy with the holidays. My mind has been spinning lately and I have been a little on the "thinking side." I feel like I have so much to do. But Claire has been sleeping so so so poorly lately I am just too exhausted to do anything else. Lately, I feel like it is a victory to get out of bed and get us all dressed for the day. It absolutely amazes me that Claire can get up and act like she has all the energy in the world. Why can't I do that. I really should be sleeping right now but I wanted to see if any of you have any advise. (I sure hope that someone still reads my blog after my lack of posts.) ;)

We had a great Christmas, with a few minor bumbs. Including a trip to the E.R. for Claire instead of Ellie. I feel like the worst parent ever. It involved a waffle iron and a hanging cord and a permanent triangular shaped indent in her head. Luckily no permanent damage or bleeding on the brain. Just a permanent scar on my heart for allowing this accident to take place under my care.

We also had a record breaking night on Christmas eve after putting together a thousand piece doll house. Fun times Eh! We ran out of time to finish the doll furniture that I was making for Adrie. So we put it in a box along with the ribbon and flowers and when she opened it, I said "cool, it's one of those kits that you get to put together your self." She lit up like a Christmas tree and thought that was the coolest gift ever. Now she can't wait to put it together herself. Score!

I wanted to give a little update on where we are at with Ellie. On the last Cardio visit, most everything went well except for her valves are leaking more than the last echo. We know that some day she will need her valves replaced, but we are hoping that is way down the road. This caught me off guard because she has been slightly improving the last few visits. Also, her blood pressure has been consistently high. So they ended up increasing her meds. Not a big deal, or so they say. But this is where my worries kick in. A week later we go to her pediatrician to get her $7000 shot of synagis. (Thank goodness for insurance.) And the Dr. noticed that she heard her heart murmur really loud when four weeks ago, she barely heard it at all. Plus, in the middle of December, she had two weeks of totally random vomiting. With no symptoms of being sick. (sign of heart failure) I am not so sure what to think, but cardio doesn't think they need to see her unless her symptoms get worse. Can your heart fluctuate between good and bad like that? I know that because of the cardiomyopathy, there is always the chance she will need a transplant. I know I worry more than I should, but it's hard not to after what we have been through with her. She has never chosen the path of least resistance in this battle. Then I worry that the cancer is still there and we are not doing anything about it. I came across a blog today with a kid with the same cancer as Ellie's. A neuroblastoma. I don't know a whole lot about this cancer, except for what I have researched online. Which I don't recommend. It can be quite scary. He has been fighting this battle for four years since he was two. And has been pretty successful until recently when the cancer keeps coming back. It is such a rare cancer and it is a childhood cancer so not a whole lot is known about it. I wish I had a magic magnifying glass that I could peek inside her body on a daily basis to see what it's doing. I know they say the tumor has been stable, but how do they know it's going to stay that way. I took this quote from this boys dad. "No matter the words chosen by our doctor, this was the question. Surrender to an enemy that is too much of a coward to fight an adult like myself, but rather it looks to steal our small innocent son." I wish this was a battle that we could help our kiddos fight. But it is their bodies that have to fight on their own. Every once in while, I am reminded that we have that cancer lurking in the background. On the news today, there was a story of a fifteen year old athlete that just lost her fight with cancer. Cancer Sucks!!! I hate that anyone has to go through this let alone all the kids that have to fight this disease. I have felt from the beginning, let it be my fight, not hers. Same thing with her heart. She's too young to deal with a failing heart. I will get over this funk and be back to my same self soon. I promise! I will get to that happy place and live in the moment instead of dwelling on the what ifs. I just hate to see an innocent child loose their life early. I have seen too many recently that have lost their battles. I want to stay on top of Ellie's. I do know that having an MRI every day is unreasonable. But how about that magic thingy.

Anyway, I know, it's heavy stuff. So on a lighter note, Nate was talking the other day and mentioned that he just might kill over. So Adrie's response to this was " it's o.k. Dad! You'll just get resurrected if you do."

THANKFUL #28- MIRACLES

2010-11-28T13:52:00.000-08:00

Sorry it is a little blurry, but it says "Blessings- I asked for a Miracle, I got one. It wasn't what I asked for, but it was exactly WHAT I NEEDED."

This sums up my life. Miracles have been so very present in my life. My many miracles include getting through five difficult births. Where we have ended up living. My husband, my girls, my neighbors, my friends, my family, my church, our jobs etc. It's easy to say that Ellie is a walking Miracle. Every day that I have had with her has been a true Miracle. But I need to also recognize the many Miracles in my life. Even if I didn't ask for them but got them anyway.

I cannot forget the many miracles that I witnessed first hand during our stays in the hospital. Some of them were what some would consider a burden but with out them, I would not be who I am today. Part of it, is getting to witness the love and sacrifice of others who rallied around us and lifted us up during these past few years. Those have been true Miracles.

I would like to send out a special Prayer request for a little hero in the hospital right now battling ALL. (leukemia) He is a fighter and needs some extra prayers for him and his momma right now. His name is Skyler. I found out about him through my younger sister who has a class with his Uncle. Who got to swapping stories of their special niece and nephew one day. His blog is www.crystalandskyler.blogspot.com. Lets cheer him on and pray for continued Miracles.

THANKFUL #27- FOOTBALL

2010-11-27T21:26:00.000-08:00

My cute little "UTES" with their older cousins who are also Ute fans. What a fun game!

I know, your thinking what? I have always loved college sports. And have always loved the Utes! They made my day today. I grew up cheering for the Utes and then literally, I was able to be a cheerleader for them during my college years. I was on the side lines at the Final game in San Antonio. I was right there for Keith Van Horn's .03 second shot to win the game for the WAC tournament down in Vegas. They have made my day many a times over the years and today was one of them. I love going to a football game with my best friend, Nate and love that we can enjoy the crisp fall air and a hot dog (the only time I like hot dogs), and the comradary of being part of a team. I loved going to Costco afterwards and seeing so many in red and having total strangers say, "good game." Awesome! I can sleep good tonight. I had a migraine all last night into today and when I was tossing and turning last night I thought, "this time tomorrow we will know who won." My husband loves how passionate I get over our team, but says sometimes it can be a detriment, when I am as into the game as he is and the kids need something. Sometimes it's good to get your mind off of things and enjoy some football.

Thankful #19-Birthdays!

2010-11-19T08:29:00.000-08:00

To see all these hero's at the same table is so amazing! Celebrating another year with your loved one is breathtaking!
Ellie was cruising around the skating rink on this little wiggle car. Today was one of those days that was picture perfect. To see her here and cruising around no less, when last year she was on oxygen and pale.

Enjoying the ball zone! I had to let all my germ phobias aside for the day so I could enjoy watching my girls enjoy life! Boy it was beautiful!

For this Birthday from Hope Kids, she opened up a little doll and Tinkerbell. Man she was so excited. She saw Tinkerbell and hugged and kissed her over and over.

You know those days you want to remember so bad
but no picture or camera can capture the moment. In my mind, I kept taking mental pictures. This was a moment that I wanted to seer into my mind.

Last December when Ellie turned one, I woke up that morning and just started to bawl. I was so emotional. Even the day she was born, our previous baby was stillborn at birth, so needless to say Ellie's birth was extremely emotional. I couldn't believe that we had come so far and that Ellie had made it to her first birthday. This was a day that I wasn't sure we would get to celebrate with her. Two days before we were in the hospital for a scary procedure. I wanted to plan the biggest bash that we could possibly plan, but with her being in the hospital for a week prior, we thought it best to keep things small. This year we got to attend a Birthday Bash for an organization called "Hope Kids." This is an organization for kids fighting life threatening diseases. I couldn't contain the tears when they gathered all the kids to blow out the candles. Looking around the table, there were kids who were in the middle of fighting the biggest fight ever, bald, pale and week from the chemo. There were kids who were in a better stage of their treatments, and parents or siblings who were stepping in for the kiddos who lost their battles. They all give me inspiration. I hope that Ellie can give some of them the "HOPE" that we so desperately needed last year. We were carting around oxygen and wondering if we would reach that ever so important milestone. As you can see, Birthday's have a new meaning for us.

THANKFUL- #11 Patience

2010-11-11T11:55:00.000-08:00

I have learned more about this subject in the last few years than I have my whole life! It has been a huge life lesson that I have had to try to implement in my life over and over again. We waited over a year to get pregnant with Eve (which has never been a problem for us) only to have her leave this world prematurely. And then with Ellie, her whole life has been a waiting game. Wait and see what her tumor does, wait for the right time to get her surgery, wait and see what happens to her heart and so on. I am grateful for the ability to be more patient these last few years. We have seen rewards come along the way slowly but surely. I have heavily relied on my faith lately. One quote that has helped me along the way is from one of my church leaders.

"Patience is tied very closely to faith in our Heavenly Father. Actually, when we are unduly impatient, we are suggesting that we know what is best–better than does God. Or, at least, we are asserting that our timetable is better than His." --Neal A Maxwell

THANKFUL #9- MACY

2010-11-09T19:43:00.000-08:00

I am so grateful for this beautiful young girl in my life. She has been a life savor many a times with helping me with the girls. She is very responsible (most of the time) and her sweet personality has been such a blessing in my life. She is the perfect oldest daughter and has carried a lot of burdens in her young life. I hope the worry of what has happened in the last few years hasn't scarred her for life. She has had the worry of life and death and watched us worry. And when asked the question if Ellie was going to die too, all I could answer was I don't think so. When we first moved to St. George, I had talked about getting a job. So to help out she said "Mommy, you can go and get a soft job like Aunt Milli (who worked at a bank) or at a store or something. You don't have to get a hard job." We would always say that Daddy works hard. She has always been so witty. She is such a big help with her little sisters and has always gone by the book. She is a very good reader and you can usually find her nose in a book. I love waking her up in the morning, cause she always wakes with a smile.

Ellie's Shortened version of "Her Story"

2010-11-08T20:18:00.000-08:00

This was Ellie's segment that ran in the news the day before the big race. She did such a cute job with Kathy Aiken. They came to our house and filmed for about an hour and a half, so it was interesting to see what they ended up with. They did however think that it was irrelevant to mention that Claire was her younger sister. Other than that we think they did a pretty good job. I wondered how they would condense her story down. She has had quite the ride and your welcome to join us...

Video Courtesy of KSL.com

FARMINGTON -- It's a most difficult family ordeal whenever a child faces cancer -- and cancer is only half the battle a little girl in Farmington is fighting.

Ellie Cason is only 21 months old. Her family calls her their "princess with wings;" but for the near future, this little Tinkerbell will have to stay on the ground.

"When she was two and a half months old, she was diagnosed with a neuroblastoma -- which is a cancerous tumor in her neck," explained Becca Cason, Ellie's mother.

What is... neuroblastoma cancer?Neuroblastoma is a disease in which cancer cells form in nerve tissue of the adrenal gland, neck, chest, or spinal cord. It is the most common cancer in infancy, with an annual incidence of about 650 new cases per year in the U.S. Almost 50 percent of cases occur in children younger than two years old. The five-year survival rate for children diagnosed during infancy is over 80 percent. However, that percentage falls to 45 percent if the diagnosis is made at one year or older. -National Cancer Institute At 5 months of age, Ellie and her parents went to Primary Children's Medical Center to determine the best way to fight the cancer. While there, something went terribly wrong.

"She was really weak, really breathing heavy, had a lot of heart failure; she was in total heart failure," Becca said.

An X-ray revealed little Ellie also had severe cardiomyopathy -- a disease of the heart muscle. Her heart was working at just 10 percent capacity. Twice, Ellie's heart stopped beating.

"It was hard to watch a nurse run down the hallway and yell, ‘We need paddles! We need paddles!" Becca said. "But she survived that too. … She's our little miracle child."

Becca believes Ellie has a guardian angel on her side. Before Ellie's birth, another daughter was stillborn: a baby named Eve.

"I kind of think of it as she's (Eve's) watching over her. She (Ellie) loves wings, so I always thought that her older sister Eve was watching over her," Becca said.

And Ellie's two oldest sisters are taking care of her. Macy and Adrie have taken Ellie under their wings.

Did you know...?Approximately 12,400 children and adolescents younger than 20 years of age are diagnosed with cancer each year in the U.S. Approximately 2,300 children and adolescents die of cancer each year, making cancer the most common cause of disease-related mortality for children 1-19 years of age. "It's hard, hard to see any of your kids struggle," said Nate Cason, Ellie's father. "But I think as a whole it's brought the family together. Her sisters, it's just brought them close together."

That bond will be needed in the next several months. Doctors must soon decide whether to remove the tumor or first try shrinking it with chemotherapy.

Though her heart has increased to 20 capacity, Ellie must be cancer free, or at least in remission for one year before, she can be put on the heart transplant list.

"That kind of complicates it with the heart issue. The chemo weakens the heart significantly," Nate said. "So we're just trying to keep things in balance."

They also try to keep Ellie smiling. Thanks to the Utah Hero Foundation, Ellie got a visit Thursday from Tinkerbell.

"Our neighborhood friends, family; it's been great. They've really come together in more ways than we can even count," Nate said.

The Casons should learn the next step for Ellie's treatment in about three weeks.

Meanwhile, the Utah Hero Foundation has organized a 5K race in Ellie's honor. It's scheduled for Saturday morning, Sept. 18, in Farmington. CLICK HERE for more details.

THANKFUL #7- ADRIE

2010-11-07T15:10:00.000-08:00

I am so grateful for this beautiful little girl in my life. She has always been so close to the spirit despite her feisty personality. Her and Macy have been at each other so much lately. So today, she told me that she was going to be better and that she will not fight with Macy for three weeks so that she can get in the habit of not fighting. Then she continued her plan of action. "If we can't do that, than we will not fight for two weeks. And if we can't do that than we will not fight for one week. And if we can't do that we will not fight for one day." A short time later, I hear them fighting over a snack. So I ask her, "I thought you guys weren't going to fight, in which her reply is, "I guess Macy can't do it."

I love how this girl is so candid. She keeps us laughing with her grown up talk and sometimes, I am not sure whether she is seventeen or seven. She reminds us every night about "blessing Ellie's Heart" during our prayers. She adds so much life to the party and with her petite build leads her to use her voice extra loud. She can't whisper for the life of her. I am always amazed at how much volume can come out of one child. Every person in this family is a puzzle piece and we need all of them to see the big picture.

THANKFUL #6- INSURANCE

2010-11-06T14:54:00.000-07:00

This is been such a blessing to have insurance. We have never had issues with them not treating Ellie. Even her Synergis Shots, which are two thousand dollars a shot and she gets them for seven months each winter have been approved. This has been a blessing that we have not had to fight it. We do however have bins of medical bills and stacks of insurance papers that are over several feet high. Sometimes we go through them, sometimes we let them stack up, but in the end, I don't know where we would be with out it. This connects to being thankful for meds because the cost for those would definately be more than we could handle.

THANKFUL #5-Sunshine!

2010-11-05T11:42:00.000-07:00

"Oh mister Sun, sun, mister golden sun. Please shine down on me." Yes, I have watched to much Barney over the years. Especially with Macy. She would sing every song as loud as she could.

I am so grateful for the sun. With out the warmth and the brightness. It would be so dark and cold. Literally. But I am one of those that needs to see it. I have a hard time when it goes days with out seeing the sun. There's something about it that makes me feel happier. In St. George, it seemed to be sunny almost everyday. I crave the Vitamin D. Love ya sun!

THANKFUL #4-Medication

2010-11-04T22:03:00.000-07:00

When you think about a natural disaster or something happens that requires you to flee your place, what would you take? One of the first things on my list are Ellie's meds. I shudder to think what would happen if we could not get her medication to her. One controls her blood pressure, the other keeps her function going and the other helps her fainting spells (we think). She used to take a very strong drug that I believe was the turning point for her heart called Digoxin. A drug loaded with things that could go wrong but also things that could go right. When they told us that she needed to go on it, I remember thinking, just stop with the side affects and remind me why we are giving this to her? All I heard was that this was an option to possibly stopping her heart from failing. Wow! I just don't know what I would do without these in our life. And if it means that we have to give them to her for the rest of her life, no biggie. It's becoming second nature. We have done it now for a year and a half. We went to Heart Camp in August, and some how, I managed to forget my Enalaprel. We were contemplating running back two hours when we had about five moms who had heard our plight offer to give us some of theirs. Sad to have so many on the same drugs, but very helpful. Every time their is a change to her meds Ellie's body has to learn to adjust. Particularly her passing out spells. We recently saw Cardiology on a Friday, changed meds on Saturday and has a pass out that Monday. Also, two of her pass out spells happened after I forgot her morning dose of Enalaprel. I think there is some sort of connection. That and getting those stinking Synergis shots which also start this month for the duration of the cold and flu season. Yeah! Fun for us. Bring it on, I dare ya to make her pass out exactly five days later. Do ya see a pattern? Even though I hate these shots, I know this will help her in the long run. Meds, we love you for all you do for our little girls. Even Macy is dependant on asthma meds. I am so thankful for modern meds.

THANKFUL #3 Claire Hope

2010-11-03T19:53:00.000-07:00

Claire in her bouncer. She loves to be outside and loves to watch her sisters play.

At Halloween Claire got to dress up as Snow White. What a cutie and she left the wig on for quite a while.

The girls having their morning bottles. Yes Ellie still takes a bottle but it's the only way she gets down one of her meds. Plus the girls always have some good bonding time in the morning.

THANKFUL #3-CLAIRE HOPE

If you saw the recent news clip on Ellie, they forgot to mention Ellie had a sister born after her named Claire. We wanted to clarify that for those of you wondering what happened. She was born sixteen months after her. And let me tell you it has been a lot of fun having two babies. My life the past seven months has been quite a blur. Lots of diapers, lots of poop, lots of blowouts, lots of throw-up and a whole lot of laughing to help us get through it. One of these days I will get my side bar updated to show that she is part of our family also.

This little one has been such a blessing to our family. She is such a happy baby. When she wakes in the morning, I check on her to see if she is awake because she usually will not cry to let me know that she is up. Family has given her the nickname "Smilely." Her demeanor was exactly what we needed, when we needed it. She gave us a good distraction during some very trying times. There were many a nights at the hospital, where I had to remember the new life growing inside of me. Even though I wanted to stay up all night and watch my Ellie sleep.

Claire at six months is already scooting around. She started crawling on her seventh month mark. She loves to laugh at her sisters when they throw a plastic ball in her face. Or when you rub your nose in her neck. She has the cutest laugh. She sleeps fairly well despite her very scary start. She would sleep all day and cry (literally) all night. It was pure torture for about a month. Nothing would quiet her down. The swing, holding her, sleeping on us, gas bubbles, nothing! Then we discovered it. Rays of light are coming down this moment and the heavens are opening up to blue skies. As we were facing another night of no sleep, I happened upon a bin of clothes that my sister gave me. I pulled out this glorious garment that was white and had velcro tabs on it. It was a snuggie! We wrapped it around her that night and instantly she settled down. Nate and I looked at each other and with a glimmer of "HOPE" for the first time in a month and crashed. We woke the next morning at five to find her sleeping snuggly her snuggie. Best invention ever!!! This saved our Claire Bear from a disastrous beginning and into the beautiful little girl we know today.

Thankful #2

2010-11-02T19:28:00.000-07:00

THANKFUL #2-Technology

This may sound like a funny one, but technology has been my saving grace the last few years. I had the pleasure recently to hear Paul Cardall's mother speak at a Heart Mom's lunch and I realized how lucky we are to be able to reach out and find other mom's and support groups out there to be able to lean on, cry to, vent to, learn from, mourn with and so on. I recently found a mom that started a group for Mom's with Cancer Fighting Kiddos. Awesome! I do feel a little lost when it comes to Ellie's particular type of cancer. I have only met a few with this rare type of childhood cancer. Technology has saved me many a times like when we moved to St. George and we were able to stay in touch with so many friends through Facebook and cellphones. And I get to still keep in touch with all our St. George friends that we made while we were there. In the hospital, I was able to skype Nate almost every night at home over three hundred miles away. I am so amazed at how far technology has come.

Thankful #1

2010-11-01T19:01:00.000-07:00

I am going to make a THANKFUL list for the month of November. I may not get to post everyday due to our limited internet access but I felt like it was a good idea to note all that I am thankful for right now.

#1-My Family

I have been so blessed to have this beautiful family that Nate and I have helped create. Four beautiful girls and one angel make for such fun and chaos at the same time. I can't believe how far we have come as a family and how they have given me a reason to get up in the morning. I love them more than I can ever imagine I would.
In all that we have been through, this is the life that I chose and I have learned and loved so much!

We're Back...

2010-10-31T21:24:00.000-07:00

This is Claire, she does exist...
The race...

We have been out of touch these last six weeks because our computer broke. We were able to buy my sister's computer, thanks Jill, so in the next week we have a lot of catching up to do. We had a very successful race, Eve's Birthday and follow-up on Ellie and lots of in between. Sorry if you are faithful followers. I have truly slacked on the blogging. Ellie had a beautiful moment on the news and we got to give the very simplified version of her story. She is a very special child and there's a reason that she has gone through these experiences and we are ever so lucky to be her parents. This journey has been a huge life lesson for us and our family and what ever the future holds for us, we feel blessed. By the way, we also have a little girl named Claire who seemed to not be mentioned in the news story. So we will get a update on how she has been doing. She has been a complete joy in our family. Heavenly Father new that with all we were dealing with, that we needed her constant smiles and easy going nature to balance things out.

Macy and Adrie are dealing well considering their own issues with having Ellie as a sister. That has been a balancing act in itself. Till next time...

The Ten oclock news!

2010-09-16T21:54:00.000-07:00

It went better than expected. Ellie was a little hyper. But I think that's better than throwing a fit. They will air it tomorrow night at ten. I am not sure how much of her story they will air because hers is a very long and complicated one, or if they will just talk about the race. But I want everyone to know how grateful we are for the support love we have felt. We know many of you have prayed for our little girl and us throughout this journey. It means so much to us!

We are so excited for the race on saturday! If you've followed our blog and come, please introduce yourself to us. We would love to meet you. I am a little nervous about how I'm going to keep my emotions in check that day.

As for an update on Ellie, we recently had an MRI on the tumor, and the good and bad news is that the tumor is the same size. We meet with Dr. P October 6th to find out where we go from here. Please keep Ellie in your prayers so the doctor's will be guided to the best option for Ellie and her heart. Ellie's also had a few more passouts than normal and it's really stressing me out lately.

Ellie's in the News!

2010-09-15T22:13:00.000-07:00

That's if she cooperates. It will be this Friday the 18th on KSL. I will update later on the time. We are so excited and nervous at the same time. They will mostly be doing of feature on her upcoming race so stay tuned. Ellie could go either way tomorrow, so we will see if she is her cute little self or her want to be shy and mad at the same time. With strangers you never know. We took her to the doctor last week and the first thing she did when the doctor walked in the room is pull her shirt up and say "heart." She is so used to people listening to her very own special beat. We would love to see whoever want to come to the race on Saturday. Thanks to all who have put so much time and effort into this. We truly appreciate it!

How Cancer saved a Heart!!!

2010-08-23T19:11:00.000-07:00

Every Heart has a story. We have a heart mom that is hosting a night of Heart Stories. Thanks Stef, you have been a huge help to me lately. I wanted to get in on the discussion so here is our story.

Ellie’s journey is a complicated one, but one that could have had a whole different path with awareness of CHD. Ellie was born in December of 2008. She was the fourth little girl born in our family. Her next oldest sister unexpectedly died in utero, so during my pregnancy with Ellie, she was closely monitored. During a routine visit to the neonatologist, Ellie showed signs of tachycardia. After that went away, she developed a heart murmur. For the rest of the pregnancy, we continued to hear it till I gave birth. The doctor did not hear it immediately after birth, but when the pediatrician came to the hospital, he could hear it again.

We took her in for her one week and then her two week visit and both times the murmur was heard. We took her in at two months and same thing happened. The doctor told us that most murmurs are benign. We felt a little relief but it remained in the back of our minds. A few days later, she came down with RSV. We were scared, but she managed to get through it o.k. with outpatient treatments given at the hospital. About two weeks after that, she developed a Horner’s Syndrome. Her right eye drooped and her pupil was extremely small. We thought she had a stroke! The pediatrician referred us to an eye doctor after we insisted that her eye was not normal. After visiting the eye doctor, she diagnosed her with the Horner’s Syndrome. This is usually caused by a pinch on the sympathetic nerve. An MRI was done a few days later. This original scan showed nothing according to the person that read the scan. Her weight at this time stayed the same for the next few months. A little over ten pounds. We noticed that her legs and arms had a rash on them. The doctor thought it could be fifths disease or an allergic reaction to the MRI that she had. We were sent by the eye doctor to Primary Children’s Hospital for a second opinion on her eye. She felt like something was pinching it because Horner’s Syndromes don’t appear overnight.

At the Moran Eye Center by Primary’s, the doctor performed a test that confirmed the Horner’s Syndrome and took a look at the MRI that we brought up from St. George. They found a cancerous tumor in her neck! A neuroblastoma. I still remember the shock I felt when the doctor came in and said that she had a tumor. A few days later, a repeat MRI was performed and the tumor showed signs of shrinking! We were to follow-up six weeks later. During those six weeks we returned to our Pediatrician in St. George with symptoms that concerned us. She was breathing incredibly fast and seemed to be tired all the time. She also was sweating while she ate and her feedings became really short and she seemed to not tolerate them for as long. He thought that she was fine and recommended we tell her doctors up at Primary’s when we returned. I was worried that the tumor had spread to her lungs due to these symptoms.

A week before we had her MRI, we went to the mountains for a day trip. Ellie immediately went lethargic and started to vomit. This greatly concerned us and we drove straight to the doctors. By the time we got there, her symptoms seemed to lessen. Once again, they didn’t seem too concerned. When we returned to Salt Lake, she again seemed to be lethargic and started to vomit. They did not want to do the MRI without General Anesthesia. So we met with our ENT the next day. He was greatly concerned with her rapid breathing and ordered a chest x-ray. What we found, changed our lives forever. Her heart was so large that is touched her left rib cage. We immediately saw a cardiologist. She was so fearful of her health that she wanted to examine her before she told us what was found. Ellie had a coarchtation of the aorta with a bicuspid aortic valve. A CHD that normally is fixed with surgery and can be fine without medications. Because it had gone so long, she developed severe cardiomyopathy, a leaking mitral valve, and an enlarged liver. She was immediately admitted to the PICU. That day a few doctors doubted that she would make it through the night. She did. and then the next and the next. Many test were done to see if all her other organs were in multiple organ failure. We were relieved to get the results that just her liver showed organ failure along with her heart. Her BNP levels were above 4000, which is extreme heart failure.

Two days later, they attempted to fix the coarch and because of her heart failure, the anesthesia stopped her heart. They aborted the surgery and went to the cath lab instead to do a stint. We were told by the surgeon that he did not think she would survive. She came out of it fine but developed a aneurysm in the aorta. She spent three more weeks in the hospital till they thought she was safe enough to go home. Eight weeks after her stint, she started to go down hill again and they felt that the time was right to do the coarch repair. This time her heart held up and she was released a week later after major heart surgery. She currently is on three medications a day to keep her heart going. We are living day by day to see if her heart can repair itself. Recently her injection fraction went from seventeen percent to nineteen percent and then a bigger jump after that. This is really promising since her December scan showed her heart getting worse. We were told then, that it was time to get a heart transplant. The next morning, our cardiologist called to say that her left ventricle showed some signs of shrinkage from a scan a few months previous but was not noticed from month to month.

Our current situation with Ellie is a waiting game for the tumor and her heart. She is not eligible for a transplant, until her tumor goes away and she is cancer free for a year. And her heart, as long as it continues to show improvement, won’t need a transplant unless she shows signs of diminished function. I can't tell you how grateful we are for our little girl and the life lessons she taught us. I hope Ellie's story gives other doctors and parents more awareness of CHD. We had no idea that her symptoms were screaming out. We saw many miracles during this past year. We feel very grateful that her life has been spared so far. I want to scream it from the rooftops to get awareness out there about CHD. We almost lost our daughter on several occasions and I don’t want one more person to go through what we went through. We have made many friends with heart moms that we have leaned on to help us survive. And have mourned those who lost their battle with CHD. With out her cancer diagnosis we may have lost our little girl to a broken heart. We still have a long road ahead of us, and hopefully the tumor will continue to behave itself, but we are so grateful for each day that we have been given with our little Ellie.

Ellie's Race!!!

2010-08-19T22:27:00.000-07:00

We are so excited! The Utah Hero Foundation chose Ellie to do a race and a silent auction to benefit our family! The race will be held on September 18, 2010. It will be held in Farmington, Utah. For any of you who want to come and run, walk, stroll or roll in our 5k, we would LOVE to see you. There also will be a silent auction and booths after the race to also participate in. We feel so blessed to know and love so many of you. I can say that along with our Hevenly Father, so many of you have carried us through these past few years. We truly could not have done it without you. When people ask us how we are dealing with everything, my first thought is we have not done it alone. It is hard to express the love and the gratitude that we have felt through out this journey. This has taught me many valuable life lessons that will carry us through this life and the next. We have met so many new friends and been reconnected with old ones because of our hardships. It is amazing and at times overwhelming to know that you are cared for and prayed for by so many.

So feel free to grab a button and copy it to your blog. Also a few have expressed how they can help with the race or auction. You may contact the people from the Hero Foundation if your interested in donating an item or basket. My daughter said it best, "I hate that Ellie is a Hopekid because she is sick but at the same time, I love that she is a Hopekid because it has made our family special!"

Oh Poop! (literallly)

2010-07-28T21:37:00.000-07:00

Well, it was one of those days! We had spent the week watching my friends kids while they were in Vienna Austria. (Lucky) They just happened to have three little girls. The youngest a year older than Ellie but still in diapers. Talk about the weight these little girls could accumulate between three of them. I would line them up when it was time to change their diapers. Size one, then two, then three. I stayed home the first three days because the thought of venturing out with seven girls under the age of nine was a little overwhelming.

By day four, we decided to go to a Birthday celebration for fun in the sun. The girls were insistent on a gift so I took on the challenge. What was I thinking! Did I really think this was a good idea? I pondered on the way there as to how I would execute my plan. I would pull up in front of the store and send the two nine year olds in to pick up a few gifts from Dollar Tree. That way I wouldn't have to trek all of them in the store. I sent the girls in at eleven. Soon they would be out, right? Well the first twenty minutes went by without a hitch. And then I smell it. Poop! I get and sniff to see who the culprit is. It's my friend's little girl. So I get her all changed up in the front seat of the van, put it in a bag and I get back in my seat to wait for the girls. They are taking their sweet time so I send Adrie in to hurry them up. Not the brightest idea I know. I can just imagine the girls pondering over the gifts to get with a little arguing on the side. I called Nate and was discussing that I may have to get the rest of the girls out if the girls didn't come out soon when I smelled it. I thought it was the diaper that I just changed, so I grabbed the bag and threw it in the trash can in front of the car. I got back in to smell it again this time overwhelming me. I turn around and let out a yelp. Ellie's hands are covered in poop! She had pooped, but the strategic way she was situated, it had missed her diaper completely! A pile of it (t.m.i. I know) was sitting in her car seat. I think she touched it and as it got on one hand had tried to get it off with the other and then used the car seat to try and get it off both hands in a matter of seconds. Her face expression was pure panic and she uttered the word "stuck". I sat there for a second while pondering how to tackle this job. I grab a plastic bag and a full brick of wipes and start in on the gigantic mess. wipe after wipe after wipe came flying out of the bin leaving a huge pile on the van floor. An older patron came out of the store to see the mess and gave me one of those looks like I was the plague or something. As if I would cause the situation on purpose or something. I ignored her rude glare and continued. Just as I was nearing the fiftieth wipe, the girls came out an hour later after they went in. So I put Ellie in the front passenger seat and told the girls to watch her while I finish cleaning the car seat. As Ellie was playing in the front seat, I hear the girls yelp at the poopy foot prints being stamped on the seat. (Some poop had gotten on her dress that I didn't see when I was changing her and then onto her foot and leg.) Frantic, I grabbed her and put her back in her seat to start cleaning the footprints. This is when the girls alerted me that poop was getting on the car seat again from the dress. I then cleaned the car seat AGAIN and finally learned that I had to get the dress off her. Ugh!!! So another fifty wipes later, we were finally on our way home only to hear Claire fill her diaper. At least that diaper didn't leak. Now I normally am not that scatterbrained but it was one of those days. I didn't ever imagine motherhood to be this way, but hey, I will take it. Mental note: don't call your husband for sympathy. He just laughed and said he was so glad he wasn't there. Which is probably true because if you know him, he gags over everything and I would probably be picking up after him too. (Just so you know, Nate helped me clean the car extra good later that night.) Also, I didn't think a picture was needed for this post.

Wordless Wednesday!!!

2010-07-14T22:20:00.000-07:00

Wordless Wednesday!

2010-06-30T22:28:00.000-07:00

How far we have come...

2010-06-04T21:51:00.000-07:00

Ellie Marie a year ago today!
We all were supposed to be on a family trip to Aspen Grove. All my sister-in-laws and mom-in-law bravely entertaining the kids and keeping face while they were getting the updates of the day. Thank you so much for this. My girls needed you guys!

A few days later after they pulled the breathing tube.

(I apologize in advance for the extremely long post, but I needed to put it on record)

I can't believe it! A year ago today, we didn't know if we were going to see our little girl alive at the end of the day. It was such a hard emotional day, that I have yet to blog about it. I had intentions to document everything, but the events that took place last year, rival events from a made up movie.

We had been in the PICU for a few days already and were planning surgery for Friday. It was Thursday and Ellie was going downhill fast. She needed to have surgery as soon as possible. We were told that whoever got done with surgery first out of the three surgeons, that is who would be doing the surgery. Dr. Kouretas was the lucky man that drew the short stick. He came into our room and with my parents, Nate's dad (Nate's mom was entertaining the girls at Aspen Grove) and us, explained the dire circumstance that Ellie faced. We all followed her out of the room bawling. I remember seeing the other parents at their kids bedsides giving us smiles of sympathy and support as nothing was said as we made the march to the waiting room. We sat there waiting for our first visit from Bonnie the NP. She never came. The waiting room was full of parents at the end of the day waiting for anything from tonsillectomy to what ever. I remember feeling the look from other parents that they could tell our situation was far worse. I remember the phone would ring as a parent would be called to the counter to be told they could go see their child.

My heart sank, I look up to see a frazzled Dr. K come into the waiting room frantically looking for us. He spots us and asks us to meet with him in the consultation room. This was only about twenty minutes after they told us they were starting. This surgery was supposed to take four to six hours! Nate grabs my hand and as we were following him, he is squeezing my hand so hard it hurt. He goes on to tell us that her heart gave out during anesthesia. She essentially flat lined. They had to get her back with a shot of epinephrine.

It scared him so bad he decided to abort the surgery. He said she had no reserves left so when the put her under, that was the final straw that her heart could handle. They got her back and felt like the only option for survival was to do a heart cath to stretch it out and give her time to get better until she could handle the surgery. We gave them the OK. He then told us "I want you to be prepared that as week as she is, I don't think she is going to make it through the cath procedure."

As you can imagine, we didn't know how to react. He left. We cried. I sprawled myself on the couch and cried some more. Meanwhile, the family that was left in the waiting room didn't know what to think. They saw the doctor leave but we stayed. We stayed until they came to get us to see her before the cath. You can't think in a situation like that. Her eyes were fluttering. But she was there, weak but there. I felt an amazing calm come over me. I was feeling the prayers of so many loved ones comforting us. I left and could not take my eyes off my bracelet that I had been given by a dear friend. It was a yellow live strong cancer bracelet that they gave us after her cancer diagnosis. I kept thinking be strong Ellie, live strong.

We were given a pager this time and told to wait in the PICU waiting room. Nate and I had one of the parent rooms for sleeping in so as the family waited, I couldn't take anymore. I went in the room and pretended to sleep. My sister and mother-in-law got there after hearing how things were going. The cath was supposed to take two to three hours. At this time it was late. I could hear everyone talking in the waiting room. Then I heard the pager go off. It seemed to soon. Nate came in to get me and we hugged each other for a while and then went to the cath lab. Dr. Gray met us there, he was the one doing the procedure. His facial expression gave me a feeling of instant relief. I knew things had gone well. All I heard after that was like the teacher from the Peanuts cartoons. Wawa wawa wa. She had developed an anurism in the aorta from the balloon stint but everything else went really well. And best of all, she had survived!

We went back to the PICU waiting room and as soon as we walked in, Nate says, " it was a success." Cheers erupted from our family, so I apologize if you were trying to sleep in the rooms. It was really late. We were emotionally, spiritually and physically exhausted. We sat bedside for several hours watching her chest rise and fall and then rise again. She was bloated and hooked up to everything imaginable. We both went into our parent room crawled on the twin bed and crashed. What a day! What a year! What a miracle!

On the up and up!

2010-05-30T21:39:00.000-07:00

Pure Happiness! That is all we need to get through Cardiology. She discovered that she can blow bubbles all by her self. And she succeeded too. Along with swallowing a few. Good thing they are non toxic!

Unfortunately, I had no more size three diapers and she needed to be changed. So luckily, I had a size one of Claire's. So we did what mom's do best and improvised. We managed to squeeze her into it.

This is after bath time. If you mention the word bath, she heads straight to the bathroom and will climb into the bath, clothes and all.

Lately I have been pulling out the camera and she knows exactly what to do. I get a "cheese" from her and several poses.

We had Ellie's cardiology visit last Wednesday. And the conclusion to that visit is that her heart is still improving!! Yeah! This is such a relief because it took seven months to start seeing any improvement. And in December, Dr. E said that she felt like a transplant was Ellie's best option but felt like she needed to be cancer free for at least a year before they would consider her for transplant. I feel very grateful for all the prayers and thoughts going our way because I feel that there has always been a higher power with Ellie. From day one the odds were against her. Dr. Buckman from Huntsman ran into my mom-in-law shortly after E was admitted last summer. (He was working with Dr. Park on her tumor.) She asked him if he had heard about her with the heart problem. He said that of course he had heard and that she was the buzz of the hospital. He said that it was so rare for a child to be faced with two non connected major things like that. I am so grateful that she is still with us today when the odds have been so against her. We have another heart appointment in July and then the dreaded MRI in August. Yuck!! That always comes around too quickly. I wish there was an easier way to look at the tumor. Somehow, we will take it a step at a time. Ellie is truly a living, breathing miracle. She and my other girls continue to amaze me everyday. I have really tried to end each day by saying to myself what special thing each one of them did or said. I love this quote that I found on another heart mom's blog...

"There are two ways to live your life - one is as though nothing is a miracle, the other is as though everything is a miracle ~ Albert Einstein"

Heart to Heart

2010-04-28T21:53:00.001-07:00

Paul Cardall, Adrie and I. Thanks Ali for taking this picture. My forgetting to bring my camera to important functions is typical of me. (This was a week and a half after I gave birth to Claire so I was a little out of it still.)

Last Saturday, I had the wonderful opportunity to get together with some amazing women and man (Paul Cardall) at the Heart Mom's luncheon. It was so inspiring to be there. Paul Cardall's mom was the keynote speaker. (He is an adult CHD survivor of thirty seven years that recently recieved a heart transplant and a famous songwriter) He inspired me so much during this past year as we have dealt with Ellie's heart. At night I would stare out our hospital window, we had a great view of the city by the way, and be uplifted by his and other heart moms blogs. Just knowing that we were not alone in this journey helped us get through some rough nights. Paul's mom Margaret was a pioneer to the CHD world. It was amazing to hear her story and how it continues even though he is thirty-seven. My nephew, seventeen years ago was born with Pulmonary Stenosis so I was telling my sister-in-law how lonely it was for Paul's mom to not have a support group like this to lean on and blogs to connect with other moms. And she told me that it was that way for her too. I feel very blessed to have such a wonderful group of instant friends and people that just know. Thank you to Intermountain Healing Hearts and all those that put this on. It was a perfect day to meet and mingle with you all. And it was so fun to see familiar faces of the people we have met through our stays at the hospital and finally meet some of you that I have gotten to know through our blogs.

Two Years in a Row!

2010-04-17T15:05:00.000-07:00

Today is my husbands Birthday! He has to be one of the best dad's out there. He is truly one of a kind. This is his second Birthday in a row to be spent in the hospital for two different kids and two different reasons. This year we were here for Claire. We were hoping to go home today, but we had to stay an extra day because I contracted a chorioamnio infection during labor.

Exactly a year ago, we were in the hospital with Ellie, getting an MIBG. This was pre-heart diagnosis. After her tumor diagnosis, we had to do some testing to see if her tumor had spread to other places. We had a MRI previously during the week and had surgery scheduled for that following Friday to remove the tumor. We went to the hospital the day before to do labs and inject the radioactive die into her through an I.V. For anyone reading this that has to go through this, ask a bunch of questions, tell them to talk you through the process while the MIBG is going on, because it was a roller coaster of a day. During the MRI, the tumor appeared to be smaller than the previous one done in St. George. This test was to show if any of the cancer cells were any where else in her body. They also told us that if it had spread to her bones or her spine, than it was a very bad prognosis. We were already nervous for this test anyway, but after they put her to sleep, they allowed us to sit in the room and watch. The one thing that they did tell us is that the cancer cells glow and show up on the screen. So as we were watching the screen, all her bones start to glow and her liver is glowing brighter than ever. This test took about an hour and a half, and half way into it, I become physically ill to the point where I had to leave. I was at the end of my rope. I thought that that was it and we were going to loose our little girl to cancer two days after I was given hope. Nate and his mom stayed in the room but later my mom-in-law told me she was thinking the same thing and thinking that the cancer was everywhere. At the end, they showed us where the tumor was in her neck, which was lit up, and that her liver was filtering the die and that is why it was showing up in her stomach. Her bones also attracted the die but it had to be solid to show cancer cells. So after we met with the doctor's we felt more relief when they told us that the tumor appeared to be contained in her one spot in her neck and that it indeed had not spread. PHEW! Maybe, this should be one of those tests that they should have you wait outside until they get the results back. They took Ellie's case to a national conference board the next day and they decided to cancel the surgery. They felt like her tumor had regressed enough and thought that it would be better to watch it and see if it regresses away completely. Because of where it is located, they decided that this was the better option and retrieve the tumor if it began to spread. I liked that they had a conference with about ten doctors nationwide to come up with her path of treatment. It made us feel at ease with their decision to cancel the surgery. Anyway, it was a roller coaster of a day but somehow we survived it and many more days like this. Retelling this day has brought back a flood of emotions but we ended on good note. Nate felt like this was all he needed for a birthday present. Cancer contained, surgery cancelled, a good day after all.

Baby Cason

2010-04-16T18:33:00.000-07:00

We all could use some hope!

On April 14th at 5:15 p.m. we added Claire Hope Cason to our family. She was a chunky 7 pound 13 ounces.

We have had Claire checked and checked again for signs of a heart problem and so far things are looking good. We will do an echo in about two months.

The girls loved seeing her. Even Ellie was happy to see her. Ellie was nervous and did not like to be at the hospital. Can't blame her though.

Becca let me go to the movies and to get a bite to eat with Josh for my Birthday. Thanks Becca it was nice to get a break from the hospital.

Posted By Nathan Cason

And then there was one more!

2010-04-14T08:25:00.000-07:00

Are we ready? I think we are. Ready or not she is on her way. We came to the hospital this morning to get started and while I was getting checked in, my water started leaking. She was meant to come today whether we are ready or not. Anyway, being here, I anticipated more of an emotional response. But so far, I am staying calm. When I gave birth to Ellie, I started crying the second I got to the hospital. After our experience giving birth to our stillborn Eve, you long for a birth that has a good outcome.
These pictures were taken the day before her heart surgery. When you go through something like this as a family, you have some amazing friends and family come out to be of help. Our friend, Shana Whipple took these awesome pictures that we truly cherish. We weren't sure how the next day would end, so we were truly grateful for her donated talent and time for our family.

The girls!!! Ellie knew something was up. We were able to get some prego pics the night before so I will post some as soon as I can, along with some newborn pics. So after feeling all these emotions, we are ready! I am excited to meet this little baby that has spent so much time waking me up at night and making me spend so many trips to the bathroom. Here's hoping all goes well, with a healthy heart to go with it.

A Blessing For Mason!!!

2010-04-04T14:59:00.000-07:00

We have absolutely wonderful news for one of our heart friends! He and his mother have been in California waiting for a new heart. His Dad and his siblings came into town to spend the Easter Holiday together. Last night they got the blessed call that a heart was waiting for them. And today, on Easter Sunday he is receiving his new heart! To have his family their right now is such a blessing. I can't begin to explain the emotions as a fellow heart mom that I have right now. My Bishop gave me a blessing once right after her cancer diagnosis and afterwards explained to us that Jesus did not just die for our sins but for our burdens that we are carrying also and for our pain and suffering. This is a miracle and on Easter Sunday.

Please remember them and the family that is suffering so much during this time. What a special gift that this family gave them and many others. My heart aches for them right now. We know what it's like to bury a child. It's the many prayers that were said on our behalf that got us through that very difficult time in our lives.

Baby Steps!!!

2010-03-30T20:51:00.000-07:00

We are feeling great joy right now. In more ways than one. Ellie had her heart echo last week. And the result is that we are seeing a slight improvement. Her injection fraction went from 17% to 19%. They are not really seeing improvement month to month, but looking back from October is where they are seeing a difference. This is a big step considering they didn't think her heart could show improvement this far out from her surgery. What does this mean for Ellie? Well, we continue on the wait and see road. They would like to see her I.F. get above 26% so that as her body grows, her heart can keep up with her. In the meantime, this gives us the time we need to get the tumor to go away. And we hope and pray that it will. If she does need a heart in the future, we need her tumor free for a year. So while we wait, we take baby steps, hopefully in the right direction. Down for the tumor and up for the heart. Man she is complicated. But she continues to melt our hearts and can make anyone smile with her cute sign language and babbling words like "ta-choo" for thank you and how she says "ahhhhhh" after she pretends to take a drink. She needs to be on the coke commercial. She also puts her hand up in the air when the grandfather clock strikes the hour and taps out each chime. The cutest is during prayer, she bows her head, puts her finger to her lips and says "sshh, sshh, sshh" the whole time. It's funny what they pick up, even when you don't realize that your doing anything.

On another "baby steps" note, our little Ellie is starting to walk!!! She's got the arms in the air, and looks extremely unsteady on her feet, but she is doing pretty well. We are trying to savor these next few weeks and days before the new baby arrives. Ellie might have a fun time adjusting to not having all the attention.

Reality Check!!!

2010-03-13T09:08:00.000-08:00

Wednesday night, we spent the evening in the hospital with contractions that were every three minutes apart. It kind of hit us that we are really not prepared for this baby. Ellie has been a great distractor for this pregnancy. Even though she is not due for another six weeks, so many things ran through my mind. Including that we have yet to find a double stroller, get Ellie moved to the other room, buy a car seat, and oh yeah, we HAVE NO NAME! We have always gone to the hospital with a couple names in mind that we really like, but nothing is sounding right. So here is where you come in. I need suggestions. Any suggestions will be very helpful. We have a few that my kids put on the list and and few that Nate hasn't totally said "no" to. So thanks to Mimi, she gave me this idea. We are going to have people help us with the naming process. But to make it a little interesting, we are going to throw in a little incentive. There is a surprise if we choose a name that you suggested. And you get the honor of helping us make this difficult decision. In a few days we will come up with a short list and do a poll to see what are the favorites. Thanks for your help!!!

Good News!!!

2010-03-04T09:54:00.000-08:00

Ellie in her cute hospital scrubs waiting for the MRI. We were supposed to be starting at nine and here it is almost ten. Not bad for having gone without food since midnight. She kept rolling her stroller back and forth in the tiny room.

Ellie can't resist something to climb into. Any drawer or box or basket is where she wants to be.

We had our MRI yesterday for the tumor in Ellie's neck. She did well with no hick-ups. We waited anxiously till they called us and informed us that the tumor appears to be shrinking again and that the lymph nodes that they were concerned about are back to their original size. (They were concerned because the lymph nodes were only enlarged on the side of the tumor, so they were worried the tumor was spreading). Yea!!! This is a big step for Ellie. We recently talked to Dr. E, our cardiologist, and discussed the tumor issue. She said that they won't list any kids for transplant, unless they are cancer free for one year. But unless the tumor is removed, they still don't know for sure if it is a neuroblastoma. They think it is, but a biopsy must be done to know for sure. We are just hoping that it goes away completely so that we can focus on her heart. If she needs a transplant, I want her to have that chance. It's hard to sit back and wait. That's what we have done since she was two months old. Thank goodness for the advancements that have been made. And the six medications that she is on right now. It is hard for me to think where she would be if she were born even five or ten years from now.

On another note, after being intibated yesterday, she is really struggling with her airway. She sounds awful! I feel so bad for her, because this happens every time she goes under general anesthesia. We deal with about two weeks of raspiness and coughing and throwing up till her throat gets better. I wish there was an easier way.

Ellie had another pass out last Saturday night, and the interesting thing is that she had her synergis shot five days earlier. I wondered about this when she was hospitalized last month for this. Looking back at her calender, she has been passing out four to five days after she is getting the synergis shots since November. They usually last for a few days and then we don't get another one for about a month. It's sure a big coincidence if they are not connected. I do think it has helped to have her on iron, because she only had one so far this month.

Anyway, we will take the good news for now and hopefully get more good news at her next cardiology visit. Thanks everyone for all your prayers. They truly lift us up and carry us through days like this.

Ellie's MRI tomorrow!

2010-03-02T21:14:00.000-08:00

After being delayed a week, due to some scheduling problems, we have gotten Ellie four weeks with no illnesses. She's ready for another MRI. Yuck and yeah and the same time. I always dread MRI's! Her last one went pretty well so I am praying that this one can be uneventful. This one is just for her tumor. Dr. E thought since we have an echo soon, that they did not need to worry about the heart this time around. If you could please keep Ellie in your prayers and also the doctors so they will know what to do with the tumor. We hope that it is shrinking again. We will update you as soon as we can.

W.M. Awards- I won!!!

2010-02-16T15:21:00.000-08:00

We were letting her skin air out because the electrodes are hard on skin. But she crawled up next to me on the couch, kicked back, grabbed the remote and pointed it at the T.V. I really hope she didn't pick that up from me.

We took the girls for a train ride on Free day. Crowded, but the girls loved it. It was worth the smiles.

The girls on their school Valentine's Day. They wanted their hair curled for the festivities.

Ellie likes to hang out in any basket. Including the toy basket. She even tried to climb into a basket that was a not even a foot wide.

Well... I managed to do it again. I won the Worst Mother Award. It started on Friday when I got home from taking the kids to school, when I noticed that Adrie left her Valentines on the table. Since her party didn't start till 12:30, I thought I would run them to her right before. So when I brought them into her classroom, she had the saddest look on her face. And to my surprise, they had their valentines all passed out and were going through them. I felt so bad and was imagining her disappointment when she opened her backpack to find that they had been left at home! She ran up to me with a smile as the tears were welling up in her eyes. I am not sure if it was a mix of disappointment and happiness that I finally showed up.

The day before Valentine's Day, we make an extra special trip to the store, of course I am doing this last minute, to buy some candy for the girls. I put the bag down and didn't think more about it until morning. So I recruit Nate to take the girls upstairs so I can make their Valentines. (Last year I did a Heart Attack Valentines where the girls woke up to a Valentine by their bed and followed yarn wrapped through the entire house. And every couple of feet their was a heart telling them what was special about them.) They loved this and look forward to what I come up with every year. So after they got done making Valentines for me, they came and found their Valentines on the table. At least the finished product was cute. But I have always tried to have them wake up to their Valentines.

Then on Sunday, Macy almost 9, lost her tooth. She was so excited!! She talked about it all day and into the night. She hadn't lost a tooth for a few years, and because Adrie had recently lost a few teeth recently, Macy was excited that it was her turn. So when we tucked her in, the last thing she said was, "do you think the tooth fairy will come visit me tonight?" and we said, " sure, now get to bed." So we went to bed and I didn't have a second thought about it till morning when we heard whimpering coming from the girls room. We walked in to Macy crying and Adrie interpreting for her. She goes on to tell us that Macy is sad because the tooth fairy failed to come. As I am racking my brain, the only thing that I can come up with is, "maybe the tooth fairy took the holiday off." Then Adrie proceeds to tell us that the tooth fairy came on Christmas Eve along with Santa Claus for her tooth. This only makes Macy cry harder. Hopefully we can pull it together tonight. Once again, she is reminding us all night that she lost her tooth.

So you can see that I earned it. I nominated myself for the award. I just hope my girls forgive me for my short comings. I could blame it on the prego hormones, but I admit that I just dropped the ball this year. Hopefully I will have it pulled together next year.

Update on Ellie: She is so stinkin cute lately. She is doing this dainty clap and wave that is priceless. She has an MRI next week and I always get super nervous for that. So I think we will know more on her status, but every time I say that, we just end up confused as ever.

It's CHD Awareness Week!!!

2010-02-08T09:20:00.000-08:00

When Ellie was 32 weeks gestation, she developed Tachycardia (a fast heart rate) and subsequently a severe heart murmur. Shortly after delivery, it was heard again by our pediatrician. Visit after visit I kept asking about the murmur and had other troubling signs that something was not right. She would breathe in short shallow breaths, she would sweat profusely when she ate. Her legs always had a marbling to them that looked like a rash and there were no pulses in her feet. She quit growing from two months to five and a half months. She also quite babbling about a month before she was finally diagnosed. These were things I continually went to the doctor for. But every time I was reassured that she was o.k. and that they had a simple reason for it. I am not telling you this to worry, but a mother's instinct is so strong and wish I had gone to a different doctor for a second opinion. It's worth it if you feel that something is not right. Ellie was born with a Coarchtation of the aorta and a bicuspid aortic valve. If caught at birth, is usually repaired with one surgery and possible stints later on. Because hers went undiagnosed, she developed severe dilated cardiomyopathy and at the time doctors said she was probably days away from death. Some have not been so lucky. This is when we entered the world of CHD. I have met so many wonderful people that have been such a great support to us and those that already knew us that have prayed on our behalf. We are so grateful for all the medicines and measures that have kept Ellie sustained thus far. I wanted to post about the statistics of CHD for awareness week.

CHD Statistics-

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by spreading awareness, someone might be spared the sorrow and the grief that comes along with this birth defect. I would love to see more research go toward this. And as technology gets better, we are hopeing to see research go towards a possible cure.

Update on Ellie-She has not had a passing out episode since she has been on her life watch monitor. Yeah!!! But it would be nice to see what her heart is doing. She has an MRI on Feb. 23 if she can stay healthy for 3 weeks before. Wish us luck on that one! Hopefully I can post on her first steps soon. She's taken a few so far.

So, we're back!!!

2010-01-28T13:19:00.000-08:00

Don't worry, she hasn't had brain surgery. I scared some family members when I sent a text with this picture. It is a telemetry monitor to see if these "passing out" episodes have anything to do with siezures. So far, they don't see any seizure activity.

We managed to not make it out of January without a hospital stay. We were so close, yet so far away. Ellie has been passing out a lot lately so we are in here to try and find the cause of these episodes. Right now they have her hooked up on an EEG monitor. She has a turban on her head to protect all the electrodes. They are looking at everything due to her history. Luckily, they caught one when we got here yesterday and had another one today that the nurse witnessed. We are just hoping this is some benign cause and not something new to deal with. Ellie likes to keep us on our toes. On Monday, the pediatrician was listening to her heart when she got mad and passed out. She says that her heart rate lowers quite a bit during the spell. Dr. E ordered her a life line monitor that she can wear for a month but it won't be here till Friday, so Dr. E thought it was best that she stay until she can get hooked up on the monitor. Oh, how we love our home away from home. These chairs that you unfold are so fun to sleep on. But I am grateful for this journey. It is hard at times but I would do everything in a heartbeat for our Ellie. I always think at night that this hospital is full of people who are hoping and praying for their loved ones. So when I am staring out the window, feeling so alone, I think of the thousands of window that this hospital and other hospitals have with those parents and loved ones are staring out of and then it's not so lonely. Paul Cardell's wife summed it up perfectly about the ups and downs of being the well spouse of someone your not sure if the will recover. It was words of encouragement this morning when I read their blog. If you get a chance to read it, do.

In the car the other day, we were discussing baby names to name this new one when my daughter Adrie said, " we should have named Ellie, Ivy." I said, "why should we have named her that?" She exclaimed, "because of all the I.V.s she's had!" It took me a second, but I got it. My oldest Macy was told by Grandma

On a side note, I realized the other day that I have only clipped Ellie's nails once when she was born and once after her heart surgery. Her nails just don't grow. I know that it is kind of a heart thing, but I thought that was really interesting. I also found out Monday that Ellie's BNP levels when we first were admitted in June were above 4000. It made me sick to my stomach that they were that high. It's probably a good thing that I didn't know what the numbers meant until later on. This is a measure of heart failure and under 100 is normal. She's come way down from 4000, but it was one of those, good thing I wasn't aware of that at the time, moment. I will get some pictures up soon. She does look cute in her grandpa pajama hospital scrubs and the turban on her head.

A little update...

2010-01-20T20:07:00.000-08:00

Playing in her saucer a few months ago. She is such a happy baby despite what she is going through.

Ellie on Christmas Day!! She has gotten so big and notice how good her eye looks.

Ellie had her echo this month and for the first time in a while, we heard something hopeful from her Dr. Ellie's mitral valve was leaking severely but now is slightly leaking and her left ventricle is slightly smaller than her Oct. echo. Barely, but it is a good sign. Dr. E said we can hold off on the cath until we see it get worse. We still have yet to see function change at all. But I guess if it's not getting worse, than the longer we can hold off on that cath.

We also saw her pediatrician today who said she looked really good. Only I had my heart sink when we put her on the scale and she weighed 18 pounds 8 oz, which is what she weighed last time!!! A month ago!! At her cardiology apt. she weighed 19 pounds 6 oz. two weeks ago. I am not sure if she lost weight or what happened, but with these heart kids it is so crucial that they gain every ounce and not loose any. My only thoughts are that she has been moving around more and she has been eating less. She is snubbing her nose to more foods that she used to just snarf down. If you have any suggestions for some good 13 month age food, let me know. We are still feeding her high calorie formula, but her bottles are getting fewer and farther apart.

She also had her Synergis shots today. Ouch!! Those things are brutal. And Ellie was a champ today. We thought she was going to pass out from the length of her cry, but she managed to catch her breath and not pass out. The nurses are very aware of Ellie so it's cute to see how they come up with new tack tics to soften the blow. She won't cry when they walk in the room until they are holding that metal tray with the shots on it, so this time they blew up a glove and drew a face on it and brought it in so it was hiding the tray. She grabbed the balloon and gave it a kiss on the mouth. It was so cute! Then she spotted the tray and started to wail. It was a good try.

No more Christmas bribes!!!

2010-01-12T21:19:00.000-08:00

I decided to spotlight my other girls. Adrie is my six year old who was born with a spitfire attitude, but can also have the heart of an angel. But I am a little worried that now that Christmas is over, the Santa will bring you nothing just doesn't work as well. This is the same child that as a baby, it took her 18 months to finally sleep through the night! In her defense she did have reflux. She was always off the charts and extremely small for her age. She weighed 15 pounds at a year. But don't let her size fool you.
The other day we were eating dinner, and Macy excused herself to go play Barbie.com on the computer. Adrie realized that she was gone and asked what she was doing. When I told her, she huffed and started to walk down the stairs. I yelled after her that I better not hear any fighting. As she continued to walk down the stairs, shaking her fist, she replied, " Oh there's gonna be a fight!" Two seconds later we heard Macy yelp.
Adrie also takes it upon herself to be Ellie's watchdog. Any time Ellie pulls herself up to something, Adrie has to be behind her so as not to let her fall and pass out. She worries a lot when it comes to Ellie. We asked her what she was going to do when we have this new one. She told us that she is going to have to quit school so she can take care of both her sisters to keep them safe full time.
When we moved up here at the end of October, shortly after we woke up to snow. Adrie peaked out the window and yelled, "wahoo we get a snow day!" We had to explain to her that up here we don't get snow days. (Last year in St. George it snowed and stuck so they got a snow day. Even though it was melted by noon.) Needless to say she was bummed.
Often I am "the worst mother in the world" and two seconds later she will say,"but I still love you." My drama queen keeps us laughing and on our toes. She is such a beautiful girl inside and out and can certainly make you feel good when she wants to. I could write about the cute things she's done all night but I will spare you. Her birthday is not till the summer, so if any of you have good ideas for a spitfire like her, I would love to hear from you. I just know that Christmas only works right before. I've tried. She told me that Santa doesn't care what you do in January.

Christmas Miracles!!!!

2009-12-30T17:16:00.000-08:00

Although we do not know what the future is, we cannot go with out counting our blessings. We have been beyond blessed this season. We so Thankful for all those who have blessed our lives and helped us out this year. Those who were anonymous and those we know, we truly are Grateful and want you to know how much we love you. We spent a lot of time up at the hospital this month, so it took a huge burden of the holidays off us.

Looking back, we were in either in the hospital or up there for appointments or procedures more than we were home. On Dec. 22, we took Ellie to the emergency room because she had passed out for a third time in less than twenty four hours. And Emily said if she does it again to bring her in. For all you heart moms or others, is this common among these heart kids or is this something special to Ellie? Either way, it scares us to death. So they decided to put the Holter monitor on her and for two days, nothing. So it came time to take it off and I put her in the tub and she began to fall back, so I grabbed her arm and pulled her up before she went in the water. This seemed to scare her and then, it happened. Not more than five minutes having that thing off and she cried, went blue, I pulled her out of the tub, laid her on the floor and she passed out. UGhhhh!!!! The doctors can't seem to figure this out either. I just want to make sure it is not damaging her heart more. They said some kids just do this, but I worry about her heart.

Anyway, we also had her visits with Dr. Lemons and Dr. Park about the tumor in her neck. They are going to repeat the MRI in eight weeks to see if the tumor is getting larger or not. This time they said she can not be sick for several weeks before. They just aren't sure if these new lesions are from her illness that she had just prior or not. Cardiology will want them to be more definitive on their course of treatment if the next echo shows any signs of worsening heart failure. Ellie is continuing to do well. She is fighting her feedings ever since her last hospital stay but she seems to eat more each day. She does have the occasional barfs, she will do this for a few days and then seem to be over it. But this is always a scary sign for heart babies so we feel much better when things seem to go better.

As for 2010, we are meeting this next year with much anticipation and hope for the next year. We are not sure what next year will bring but we know that with the friends and families that we have, we can get through it. Even all the strangers that have reached out to us have been amazing. We love you guys!!! Thanks for all the Miracles!!!!

We are having her next echo on Jan. 6, so we will keep you posted. We are hoping to get more answers but everything with Ellie is hurry up and wait. So we shall see.

Happy Birthday Ellie!!! (And a roller coaster of emotions)

2009-12-11T09:24:00.000-08:00

Happy Birthday Ellie!!!
This week has been a flood of emotions. I cannot believe all that has happened in this last year. It has been the greatest and worst times of our life. But we are so grateful to have such a beautiful, strong and blessed child in our lives. She has taught us so much in this past year. We have learned so many life lessons and met so many new and caring people that has helped us and had some wonderful blessings from those that love us and care about our family. What a blessing it has been to know the people we know!!!

The results did not quite go like we had planned. Afterward, Dr. E came and told us that she is seeing no increase in function. In fact, there may be a slight decrease. So the plan was that night to proceed with the cath lab and check her pressures to see if she needs to be listed right away, or if we can wait longer. Then the next morning she called us to say that she likes to review these cases that eat at her. And even though there is a decrease in function. Her left ventricle is showing a slight decrease in size from her August echo to her Oct. echo. So now we are going to hold off on the cath lab until she sees her for another echo. So at this point, we were seeing a glimmer of hope. Then we got a call from her tumor doctor. He thinks the tumor is the same size but another doctor feels that it's more prominent or slightly larger. They also are seeing two new lesions on some lymph nodes in her neck. They are not sure if this is from the tumor, or if it's from her recent virus that she had. So this means more tests for tumor. As you can tell, this has been a roller coaster of emotions for us. I was just letting it sink in that if she needs a new heart, than maybe it was better for her to have this chance at life. We are just grateful for her beautiful life and the life she brings to our family. Please continue to pray for in the coming weeks and months. She is so special to us and we continue to see blessings from these special prayers.

Ellie- we have been so blessed to have you in our lives. I have cherished every day and have learned to remember the small things. There were some days that we wondered if you would reach your first birthday, but your strength and resilience has brought you here. You are so loved by those around you and your sisters, all of them care and love you so deeply. We have met so many kind and caring people because of you and the grace of humanity has shown itself over and over. I love to go to clinic and have so many people say "hi, Ellie" and inquire about your well being. We love you Ellie, and may Heavenly Father give you the strength to be with us for a long time.

Love, Mom and Dad.

Tomorrow's the big day!!!

2009-12-08T17:20:00.000-08:00

The day I dreaded and looked forward to is finally here. Ellie has her MRI tomorrow for her tumor and her heart. Please keep her in your prayers tonight and tomorrow. We are hoping that we see improvement on both. Plus, Ellie in the past has liked to keep the docs and nurses on their toes and let them know that nothing is routine. She coded during one of them so this makes us really nervous. The good thing is that they actually have changed some things after this incident to make it a little safer for these kiddos. It still is never easy to have her put under.

We want to thank those from the bottom of our hearts who have been so supportive to our family during these difficult times. Sometimes we know who you are and sometimes you do it anonymously, but regardless, we love you and are so grateful to know such wonderful people. I read on another blog that these are the worst and the best times of their life and I know exactly what they mean. Even though the road has been rough, humanity shows it self in some of the most giving and selfless ways.

The prayers of the children. When Ellie had her successful heart surgery, (her first attempt didn't go so well) my little girls kept asking my sister-in-law what time it was. When she said it was two o'clock, them and my two nieces went down to Kylie's room and each took turns saying a prayer. They did this on their own without any prompting. But this made them feel better and helped us feel better too. We will keep you updated on how things go tomorrow.

Update!

2009-12-04T16:59:00.000-08:00

We are home! It's interesting that her shortest hospital stay has been for her heart surgery. Hopefully, we can keep her healthy and out of the hospital. It's really hard as a mother to watch your child go down hill so fast. This made us so grateful to be closer to Primary's. It still seemed to take an eternity to get there. The nurses were wonderful, even though we were on the other side. We have a list of nurses that we usually get when we are in the heart section. Ellie is doing better minus losing a little bit of weight.

On another note, one of her heart buddies received the precious gift of a new heart! Please remember them today during surgery and the family that gave this precious gift. For they are suffering tonight. We hope goes well tonight.

"If Life Gets To Hard To Stand, Kneel."

-Gordon B. Hinkley

(Anna, if you read this, I lost your info. so when you have a chance, please e-mail me at rebeccacason1@yahoo.com)

Ellie's back in the Hospital!

2009-12-02T00:04:00.000-08:00

Well, we're back. This time we went to the ER. It was our first admission through the ER. So I was pleasantly surprised that it didn't take three hours to be seen but it did take three hours to get to our room upstairs. The good thing is it's not her heart this time. The bad thing is it's a virus that has to run it's course.

We spent time with family for Thanksgiving and two of the cousins got ill. Then the next day Ellie got ill but she didn't get better. By Sunday she was totally lethargic and vomiting. We rushed her here and because she is on diuretics and of her heart condition, they thought it was best to admit her. We are hoping to be out of here soon. Well, my next post I will try and make it more positive. Thanks to Karen and Kayelynn for taking the girls after school and to my Mom-in-law for helping them in the morning and stuff. And to Rachel for sitting with her so I could get a break. Love you guys, it always takes an army of people when we are thrown off like this. We are just greatful to have such good friends and family to help out.

On a side note: please keep Ellie in your prayers next week as she has her MRI on Dec. 9. She is getting her tumor and her heart looked at. We are hoping for an uneventful MRI and good results.

We have been here since Sunday and every night I keep thinking that when I can pay it forward, I would like to get some comfortable sleeping chairs that you can actually sleep on. I am exhausted from no sleep. Hopefully I can sleep in my own bed soon.

When to expect the unexpected....

2009-11-24T20:56:00.000-08:00

Well, life is fun isn't it? It's like a roller coaster ride you've never been on before. You never know which way it's going to go. Up and down in and out around and around. Well our life gets better and better. We've dealt with a lot of changes lately. So this change was quite unexpected but greatly wanted and exciting. We are so pleased to let you know that we are expecting!!!

-The good thing is I don't have mono, but the doctor said there is a perfectly good explanation for my sheer exhaustion.

-After several complicated pregnancies, we are cautiously optimistic. We know that things can happen late into the pregnancy.

-We will have two, count them two in diapers for quite some time.

-We are nervous about the idea of taking care of a child with special needs and a newborn. We have a fetal echo in 5 weeks to see if the heart is o.k.

-We know that we will get through this with all the support that we've gotten from family and friends.

-Why not throw another loop in the roller coaster. It may be a wild ride, but it's our wild ride! And I am in it for the long haul.

-We always wanted another one after Ellie. We thought closer than five and a half years would be nice.

-Phenergen and Zofran have become a constant companion. Isn't it great to be in modern day!

-For some reason after four girls, I feel a little pressure to have a boy. But we just want a healthy baby.

-with God, all things are possible.

"Things work out, it isn't as bad as you sometimes think it is. It all works out, don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. If we will put our trust in him, if we will pray to him, if we will live worthy of his blessings, he will hear our prayers." — Gordon B. Hinckley

So, we appreciate all the support we have been given thus far. Especially all the thoughts and prayers on behalf of Ellie. You have no idea what that means to me and our family to have people call or stop by and just give us words of encouragement. And we feel all your prayers for our family. Thanks to all the heart moms for words of encouragement and support. Thank you for all your support from St. George to here to places all over the country. We have the best family and friends anyone could ever want. We are really excited to be adding this baby to our family.

Boy or Girl?

Boy or Girl?

2009-11-23T14:49:00.000-08:00

When life gives you lemons.....

2009-11-18T10:22:00.000-08:00

Let's make lemonade!!! I am feeling very great full for my life right now. I feel very blessed to have the people I do in my life and to have gone through the experiences that I have. I feel that they made me who I am today and have witnessed the amazement of humanity that comes from experiences we have had. We are extremely blessed to have all of you and our savior in our lives. We could not do this alone.

This story is not for the faint of heart, so if your squeamish, this may not be the story for you. I remember a story from my childhood that reminds me of how life and marriage is. My older sister and I were really close. We did many fun and strange things to entertain ourselves. One day we decided to have a glass of lemonade. When we poured the lemonade, there was only one more glass. So instead of splitting it up, we decided to take a drink, than spit it back, than pass it back and forth to enjoy it a little longer. A few times we would accuse the other one of actually swallowing. It got to a point where we gave up on the lemonade, and went back to playing.

When life gives you lemons, make lemonade! Sometimes you taste it and it's sweet or bitter. Sometimes you swallow and take more and sometimes you give back more than you got. In marriage it's a lot of give and take, sweet and sour, refreshing and hard to swallow, and every once in a while you get a seed. But in the end, I couldn't ask for anything more. I couldn't ask for a sweeter life.

I have been married to my best friend for ten years now. Ten years!!! I can't believe all that we have been through in the last decade. Including our legacy we created in our children. I am so proud to be their mother and Nate's wife. I know a lot of you feel that you have the best husbands, but I truly feel that we couldn't be a better match for each other. These experiences over the years has bonded us beyond words. And I am so great full to know that we will be together forever. Our little girl, Eve, is ours forever, along with our other girls. Thank you to all who have been a part of our lives. I just can't wait to see what the next ten years brings. Thanks Nate for sharing this beautiful life with me!!!

"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come." — Joseph B. Wirthlin

Knock knock, who's their, the great gamboo...

2009-11-14T13:35:00.000-08:00

I am a little slow on this post, but in my defense, we have been held hostage to the great gamboo. We are now over it, but it started with Adrie, two weeks ago she fell ill, followed by Macy three days later, with an asthma attack and an illness, than dad a few days after that. The good thing is that Ellie never seemed to get sick and that was a huge sigh of relief. I felt like a pharmacy, dealing out Ellie's usual heart meds, plus all Macy's asthma meds, along with cough syrup to everybody. Needless to say, I am exhausted from being kept up from all the coughing, not by me mind you. But I feel much better knowing that they are over it and we kept Ellie from getting it.
We did have a scare from Ellie last Friday, she wanted to keep us on our toes and keep our guard up. She was walking along the couch and fell backwards. I think it scared her and she let out this big bellow of a cry. She continued to hold her breath until she passed out! We laid her down so she could catch her breath, but it still took about five seconds for her to start breathing. We were this close to calling 911. We called cardiology, and they thought it was just from holding her breath. But when it comes to these heart babies, your not sure how much pressure their little hearts can take. We are just wondering how much stress our hearts can take. Ellie's really good about making sure our hearts are beating good.

Cardiology Visit!

2009-10-25T22:34:00.001-07:00

Ellie with her cardiology doctor. We love her. She's been there from the first diagnosis with Ellie and we value her opinion. She loves her patients so much and wears her emotions on her sleeve. I almost know what she is going to say when she comes into the room.

When people that don't know her, come up and talk to us, inside I am thinking, "you have no idea how special this little girl is and what she has put the rest of us through."

Cardiology Visit!

2009-10-25T22:30:00.000-07:00

Ellie with mom and Grandma keeping her entertained. She actually does pretty good if you have a bottle ready and bubbles.

Cardiology visit!

2009-10-25T22:05:00.000-07:00

A little frustrated right now, Ellie is looking so good. We went to her visit and she is clinically checking out physically really well. She does seem to get tired when she plays or is active for very long. But her BNP level is way down. Not normal, but pretty good. And Dr. Everett says she normally doesn't list kids for a transplant until they are in the thousands. We just need her echos to see a change for the better. There is still no change, which if you saw her, you would have no idea her heart was barely functioning. I know that this will not happen overnight but I would like to see the slightest change to know that her heart has a chance to recover. Her next visit they will do an MRI for her tumor and her heart. I have feeling that this tumor is going to be gone from the way the last scans have gone. So instead of doing a cath, they will look at the heart at the same time. If you know how Ellie has giving us the scare of a lifetime during an MRI, we could use some prayers to help us get through this. Just scheduling it gave me the butterflies. I still jump when they come over the loud speaker just to page someone or get a hold of someone. I will never forget feeling so helpless as they called the code blue to MRI imaging knowing she was in there. I still remember everyone running past us to her room and the nurse coming out and yelling repeatedly, "where's the paddles, we need the paddles." You can hear everything, but it's muffled. Everything is in slow motion but going to fast. Dr. Pulchowski came out to talk to us afterwards, and I felt like my eyesight narrowed and I was passing out. My hands and my feet went numb. I was so relieved that she was fine, but physically and emotionally drained. It's amazing after you go through something like that, how you feel like you ran a marathon. Nate and I crashed that night, we never slept so good the whole time she was in the hospital until that night. We know how much prayers are needed and help us. So keep her in mind so we can have a smooth MRI.

Good bye St. George!!!

2009-10-25T21:40:00.000-07:00

Well, we have a lot of changes coming to the Cason house. We have decided, kind of hastily, that we will be moving to the Salt Lake area. We have made four trips in September up North. Either for Ellie, or for Nate for an interview. One already in October! We feel at this time, that we need to be up here closer to the hospital during this phase in Ellie's situation. We also have a lot of family that can help us out. We have such an amazing support system. From all our Sis' and folks and friends that dove in to help with out a question. And took on two extra kids all summer. And all our visitors at the hospital that came to watch Ellie so we could escape to the lunch room or go for a walk. We also have a great support in St. George, but there has been many a night that we debated whether to take her to the hospital here or drive to Salt Lake when Ellie chooses to have a rough night. This has been a journey full of twists and turns but I will say that I would rather be on the journey than not. I have a plaque that I got that says, " find joy in your journey." So, I will do my best to make the best of our situation. Good bye seventy degree weather and flip flops year round! I will miss you. The nights with out mosquito's and flying things, good bye. I will not miss you, the tarantula that I found on my porch or the scorpion that we found in our garage that was five inches long. I will miss Tuesday night pickle ball with the ladies and walks all year round. I will not miss cockroaches and the blistering summer heat. We will be back. We have lots of people that would let us stay, right?

2009-10-25T21:34:00.000-07:00

Macy on the last day in St. George with her teacher, Mrs. Chadaz. We loved their teachers and were sad to say goodbye to them so early in the year. Macy started to cry which in turn made me cry, which made several of her girl classmates cry. I didn't know whether to laugh or cry some more. The girls and us made some very good friends during our time here.

2009-10-25T21:24:00.000-07:00

Adrie and her teacher, Mrs. Hunt on their last day of school in St. George. Adrie loved her teacher and her class. In fact on the first day of school, she came home and said, "that was the best day of my whole life."

Our house in St. George is ninety percent tile. So this walker was perfect for Ellie to scoot around the house in. This is what Ellie did a lot of when Nate and I were packing.

Chillin' like a villian

2009-10-25T21:20:00.000-07:00

Showing her flexibility and chillin' with her aunt Jillian. She is always posing for us when we pull the camera out.

2009-10-25T21:03:00.000-07:00

Ellie had her eye appointment to look at her Horner's Syndrome. (The tumor that is on her sympathetic nerve caused her eye to droop and be a different dilation than the other.) They give us the dilation glasses and she has worn them every time without taking them off. She kept them on all evening. Here she is eating a graham cracker.

Happy Birthday Eve!

2009-09-29T20:59:00.000-07:00

We went to visit Eve's grave last time we were up north. We cleaned up her marker and trimmed back the grass. Today was a beautiful day. We miss her terribly and she changed our lives forever even though we only got to physically hold her for a few hours. I am glad that some of our family got to hold her too, but looking back I wish we would have allowed more of you to take in such a beautiful time in our lives. She looked so perfect and peaceful. I remember that her hand seemed to grip my finger as if it were her way of saying that things were going to be o.k.

Don't take life for granted

2009-09-23T12:16:00.000-07:00

Ellie conked out and taking a siesta on the floor. She is starting to take some decent naps.

We recently returned from Ellie's appointment at Primary Childrens. The over all verdict is that there is no change in her condition. The only way that I know how to look at this is that at least it hasn't got any worse. Dr. Everett sounded really positive about how she looked though, she had gained weight, which is a huge deal for these heart babies. She is going to give her about three to six months to see if heart function improves. They are also going to watch her pulmonary pressures real good to make sure they stay open. She said if they go bad, they can't even talk transplant. So we are once again in a hurry up and wait situation. We are taking life a day at a time. And enjoying every day because you never know what tomorrow will bring.

On the way up, we saw a crash that involved two vehicles. It did not look very good, and as we approached it, we could see that a blanket was spread across the passenger side of one of the vehicles. It is very sobering to see that and to think that probably a half hour ago was alive and well, with the family or friends that they were with. And now they are realizing that their worlds will be forever changed. Every life is so precious and it can be taken in an instant.

We are going through a rough patch in our lives right now, but I can't help but feel so blessed. We feel our saviors love and the love of those around us. I couldn't be blessed with a better husband and father to my beautiful girls. He has been my rock and my companion and we have truly grown closer through adversity. Every mile stone that Ellie has reached has been a miracle in itself as well as my other girls. Macy is doing well in Math and it is priceless to watch Adrie learn to read. I am hoping for a good memory because that is all you can take with you when we leave this world. "Be kind, Everyone you meet is fighting a hard battle."-Marjorie Pay Hinkley. Some battles are harder than others but I know that we can learn and grow and become better people because of them. Anytime we got down on ourselves at the hospital, we didn't have to look far to find someone worse off. We are still learning from the strength and resiliancy of others. We don't know where we will be a few months from now but we are greatful for the health Ellie has and we are praying for improvement. She is such a blessing in our lives.

The Heart Walk!

2009-09-22T13:13:00.000-07:00

So, we went to the Heart Walk for the Intermountain Healing Hearts organization to support them. We came from St. George so it was quite the trek. My Uncle Ty and his family were so gracious to allow us to stay with them in Orem. Thanks guys. This was kind of a last minute deal, so we apologize to those of you who didn't know. This year it was just us, but I am extending an invitation for next year for all who are interested. This is a wonderful support group for us that gives back 100%. So next year we plan on having everyone that can come, come walk with us. It's only a mile, these are heart kids we are talking about. We had a lot of fun and enjoyed the perfect cool morning. It was also so fun to meet so many heart buddies that we have gotten to know through the blogging world. I would post pics, but I gotta admit, I am not good at having my camera with me so Hilary, if you see this, she took a picture of us there, send it to my email. I would be so appreciative if you would. So we will make it a date for next year.

What's normal?

2009-09-02T21:59:00.000-07:00

O.K. so we are trying to establish a new normal. We got back from our third visit to the pediatrician in a week and a half. Yesterday, she was throwing up and struggling to eat again. When she does this, I convince myself that we are going to be life flighting her up north and that they are going to be telling me her heart is getting worse. She was hornery all day yesterday and really struggling. If this were my other kids, I wouldn't think twice, and chalk it up to fussy baby day. The days that she does this, I sleep horrible! I toss and turn all night to my husbands delight, counting her breathing and listening for her all night. Every time she would get close to sixty breaths per minute, my mind would race and I would think the worst. I have to figure out a way to relax at night because I am a walking zombie during the day.
We are adjusting her lasix right now. At the last appointment, they cut her lasix in half, but the doc down here felt like she needed to take the pressure off her heart. So after he called the cardiologists, she's back on it twice a day. It seemed to have helped, but she has lost five ounces since last week. This might not seem like a lot, but for her we are having to be very watchful. I wish I had some magical button that alerted me and gave me a readout as to when to take her in and what she needs. I probably am over thinking everything, but after her history, how can you not second guess yourself. Anyone, know of anyone giving away free massages? I think I need one. Big breaths, right now it's time for bed.

Cardiology Visit

2009-09-02T21:49:00.000-07:00

We've spent a lot of time with Michelle and Dr. Everitt. So we had to get a picture with them. They have been great friends besides, helping us get through this.

Ellie earned her cardiology shirt at her last visit. She was showing off for them and trying to show them that heart surgery was no match for Ellie this time.

We are Home...

2009-08-20T21:33:00.000-07:00

We came home yesterday and crashed. Over the last three months, we collected a lot of stuff during the summer. Every weekend Nate came up, he would bring stuff off a list I gave him, so when we came home, we drove our van and my father in laws car stuffed of things we collected. It was bitter sweet to come home. The girls had such a fun summer, and we had so much help from family and friends, but it was nice to be home and be a family. We can't thank everyone enough for sacrificing all your time and energy to stop what your doing and help with the girls, or come visit in the hospital. And if you were praying for us, we know that the power of prayer is real and has blessed us over and over. We were able to get through these trials because of your endless prayers. So, thank you.

The appointment for Ellie went really well. They said she looked like a different baby. The cardiologists did an EKG and a chest x-ray and they were good results. They didn't do a echo cardiogram because they thought they didn't need to unless there was a reason to worry. We don't have to be on oxygen during the day but she still has to be on it at night, yeah! You feel so tied down when your on it 24/7. I am just leaving her tabs on because their so rough on her skin when we change them out. If anyone has something that gets these off better, let me know. So we have a follow-up in four weeks. Pray for function increase. Her function is at 23-29 percent and her cardiac output is at 10-13 percent. It's a little scary that one can be living off of those numbers. They would like to see a change in the next month to two months. Once cardiomyopathy happens in adults, it is very hard to see any sort of recovery, but in children they have a better chance at seeing heart repair.

So, we settled in last night and the girls were off for their first day of school. Yes, I do have other kids. Adrie got in the car and shouted, "that was the best day of my entire life." Which I hear often along with, "this is the worst day of my entire life." Oh the life of a drama queen! We already love our teachers. They have been really good about missing the first week of school and seem to be a good fit for the girls. Ellie seems to be sweating a lot more down here but it is 106 degrees today. She really seems to be working so hard when she eats too so we will just watch that. Sorry for the long post but I had a lot to report. Miss everyone already!

Cardiologist appointment tomorrow!

2009-08-18T22:56:00.000-07:00

It's finally here! Our appointment to see how Ellie is doing. I have been getting more nervous as this day arrives. I feel like all is going well right now except for some of her weird breathing again. They are going to increase her carvedilol and do a echo. I am nervous to find out her numbers. Her heart was the same function for the full eight weeks from the catheterization to the surgery. Here's hoping for change. The good kind.

Oops...

2009-08-18T00:03:00.000-07:00

So, I am just trying to figure this blogging thing out. When I did the below post, it came up backwards. I recapped in a little more detail, the week of the surgery. So if you want to start at the bottom and go up, it makes better sense. Plus it is one a.m. Hope you enjoy some of our pics.

Ellie's week in the hospital

2009-08-17T23:14:00.000-07:00

You would think that after heart surgery and a hospital stay, that you would come home and crash. This was Ellie's euphoria that continued the whole day. Not one sign of tiredness or fussiness. She finally fell asleep late that night. She was so glad to be home!

She stole the show as we walked out. So many people stopped to say "hi".

One of our favorite nurses, Nicole. She is our good luck nurse. She was there for our "successful" MRI and this time on going home day. We had so many good nurses there.

This is me acting like heart surgery was a breeze. The nurse commented that this is why she likes working with children, because if this were an adult, they would still be freaking out and saying, "this and that hurts" for weeks where as these kids rebound like nothing happened.

O.K. guys, I am ready to go home!

I love this picture! We had made it to the floor and this is in her cute hospital pajamas and her bingo prize (the blanket) that she won. By the way, everybody wins whether they play or not.

As soon as we got to the picu, we went and found her favorite hospital toy. The rain forest scene. She actually looked at it like she recognized it.

She had so many medicines going into her. As the night went on they removed little by little.

Notice how many I.V. lines they have coming out of her. It was a scary sight to see her like that, but felt blessed that everything went well.

We didn't know what to expect after what happened last time. Here she has gone since midnight without food and she is calmly sitting there. What a trooper! I can't hide how scared I am right now.

For some reason, my face says, "there's something going on, I just know it."

With Grandpa Cason, where Ellie spends a lot of time getting rocked to sleep.

All three girls getting ready for the big day.

This is Nate and Ellie, the morning of the surgery. We were both trying to smile, but the worry was tremendous!

Doctor visit

2009-08-11T22:45:00.000-07:00

A little over a week out and we saw the doc today. Her heart murmur is gone! Other than her strighter, she is doing well. We need to get her heart function improving, but they said that can take weeks or even months. They are hoping with the right combination of meds, that it will start to repair the heart. Now that we are on this side of the surgery, I am glad that they fixed it when they did. Dr. Everett was right on because she was at her peak. Her legs were starting to marble again, the vomiting was getting worse and she was breathing faster than she had been. Plus, they were able to get the aneurysm out at the same time. (It was next to the coarch, and was caused by the catheterization during the first procedure.) I am so glad to get that off my shoulder. We see the cardiologist next week. I'm hoping for an increase, even though they said it won't happen.

Remember...

2009-08-11T22:26:00.000-07:00

Anytime I hear of a child passing away, my emotions of losing Eve come back. My biggest fear is that I'm afraid people will forget about her. She changed my perspective on life. I saw miracles happen and even though we couldn't bring her back, it changed the way I feel about life. I would like to say thank you to all those who came to her funeral and helped with everything. The many friends and family that kept me company to help keep me busy. I had ladies cleaning my house and even an acquaintance of my mom's donate the headstone. (They did that for us that year instead of a sub for Santa.) We did not get to come up for memorial day this year, so some of our family went by to make sure her grave was visited. Thank you, now I will get off my soapbox. I just wanted to remember her...

Bridger

2009-08-10T11:15:00.000-07:00

The heart Community is mourning the loss of superhero Bridger. Please pray for his family during this difficult time. Our hearts go out to all of you!

Going Home!!!!

2009-08-07T09:56:00.000-07:00

The doctors have really changed their tune today. Ellie flipped a switch and is doing well today. Yesterday, she had a bad day so when the night nurse got there, she noticed that there was a huge difference from the night before. We had respiratory therapists in and out all night to see what they could do. They think it is reactive airway from being intubated. So they have been doing treatments all day. They also think that she needs to be suctioned but are weighing the pros and cons. If they suction it could make it harder for her to breathe. Well, they suctioned and that seemed to help. Today she is a different child. She is laughing and pulling her big grins for the doctor as if to say "look how good I am doing, I can go home now." They feel like she is doing well enough to go home. They do however want us to stay here in the valley until we get the ok to go home. She does have her medications and oxygen, but at least they feel good enough to have her out of here.

Belly Breathing!

2009-08-06T09:44:00.000-07:00

Ugh! She woke up today and was not in a good mood. They took her down to x-ray, and from then on she was screaming, then threw-up, then more screaming. By the time the doctors did their rounds, she was belly breathing. That's where she is breathing faster than sixty breaths per minute and her little belly is sucking in and out so hard, she is retracting in all three spots. I do not like when she does this because she did this before we found out about her heart and when we got to the hospital, she was in heart failure. Hopefully they can get this under control. They may have to tweek a few medications or something.

2009-08-05T13:38:00.000-07:00

Ellie felt much better after she was able to see her sisters Macy and Adrie. We moved out of the PICU and are on the Medical Surgical floor. She is doing well, all things considered.

2009-08-04T10:11:00.000-07:00

Ellie 17 hours after surgery and two blood transfusions later and the breathing tube out! She woke up and was responsive for the first time. She is playing with her favorite toy, medical tubing. She will be able to have her first meal at 2:00.

2009-08-04T10:05:00.000-07:00

This is Ellie 1 hour after surgery! She was a little brachycardic "low heart rate" off and on through the night.

Surgery Update!

2009-08-03T21:13:00.000-07:00

Well, things went better than expected. I did better than expected. I have been a nervous wreck all week long. I was crying all morning, but when I got here, I felt amazingly calm. I know that we have been in a lot of thoughts and prayers lately. So thankyou to many prayers from around the world. I couldn't have gotten through this without a higher power.

She went in about three and did amazingly well considering she couldn't eat since midnight the night before. We sat there for an hour before our first update. (Last time during surgery, her heart gave out during the anesthesia and the surgeon came in a half hour after she left, never a good sign.) So us and our parents and Marie, said nothing for an hour, just staring at the doors where they come out of the operating room. They came and gave the first update and she did well this time. They continued to give us updates every hour till she was done.

In all, she did great. Her heart was strong enough to stay off the heart and lung machine. She came out intubated and highly sedated. She has a chest tube and her fluid is high right now, but hopefully they can get that stabilized. They have her on morphine but every time she starts to wake up a little, she is extremely uncomfortable. They hope to extubate by morning if her stats stay up through the night.

I feel so greatfull to everyone for helping us get through this. Now we just have to get her heart function to get better. If it doesn't, they have briefly suggested that she may be a candidate for a transplant down the road.

Surgery Tomorrow!

2009-08-02T20:26:00.000-07:00

Ok, big breath, we are here! Today is Sunday and Ellie will be in surgery tomorrow! I am starting to feel very uneasy. However, I feel better about it, this time around. We are not in an emergency situation and I feel that they are better prepared for our Ellie, who likes you to expect the unexpected.

Since we just started this blog, I will give you a brief story of how we got here and then I will go back and give details of our journey. Ellie was diagnosed at three months with a neuroblastoma or tumor in her neck. At five and a half months and numerous trips to the doctors, she was diagnosed with congestive heart failure. She was born with a coarchtation of the aorta which caused her heart to be severly enlarged. Her left ventricle touches her ribs. They tried to repair it the next day and her heart gave out so they aborted the surgery and did a heart catheterization and a balloon stint and that worked for the time being. This gave her a chance to get stronger and healthier. Her liver has decreased in size and everything else seems to be pretty healthy. So this time, I feel like she is ready, but as a parent, couldn't be more scared. We are incredibly greatful for those around us who have picked us up and our carrying us through this trying time. We know that our savior is there also and are leaning heavily on him. We will keep you posted in the days to come.

Going Home!!!!

2009-08-02T20:00:00.000-07:00

After two and a half weeks, they felt like Ellie was strong enough to go home. She was so excited and thanks to numerous people who helped in the recovery we were on our way. (To Bountiful, not to St. George because they wanted to monitor her close by.)

After her first heart surgery

2009-08-02T19:53:00.000-07:00

This picture is a little hard to look at but this is after a successfull surgery to balloon her heart. She was heavily sedated and restrained with baby handcuffs. It was so pathetic!

2009-08-02T19:32:00.000-07:00

This is Ellie at two and a half months. This is Horner's Syndrome, which is a pinch on the sympathetic nerve. They did an MRI and found the neuroblastoma in her neck at the base of her skull. Since then her eye is getting better and the tumor is shrinking.

Nothing can prepare you for "C"

2009-03-08T09:53:00.000-07:00

So, we know that it is the Horner's syndrome. And there are a myriad of causes, including a neuroblastoma. That being the worst. So Dr. Richen's orders a scan done in St. George. When we got the results, we were excited, because they said that nothing was found. Dr. Richen's was excited also but wanted to confirm that it indeed was a Horner's Syndrome. So we took our scans on a C.D. and off we went to the Moran Eye Center to see Dr. Katz, a neuro opthamologist. This was a few weeks later, but we were feeling good about everything because they ruled out the tumor. They performed a procedure called a cocaine test. They put eye drops of pure cocaine in your eye to find out if it was a true Horner's Syndrome. The test confirmed that and all the doctors were intrigued because it is so rare and to see it in someone so young. They wanted to look at our scan that we brought with us. Next thing we knew, they were taking it over to Primary Children's to have the neurologist look at it. When the doctor called us back into his office, his demeanor changed. He says, " We have found a tumor at the base of the skull in her neck." My stomach hit the floor. If you have ever gone through this, you know what this feels like. It's indescribable. I put it like this, "now I get it, this is what it feels like to have your child diagnosed with a devastating illness." Nate and I and Nate's mom were speechless. We were here to find what else it could be. That was supposedly already ruled out. I thought this must be a mistake. That first night I cried all night. You think doom and gloom when you get a diagnosis like that. That next day, I woke up and decided that we were going to fight this head on and not be so negative.

Horner's Syndrome...

2009-03-03T22:38:00.000-08:00

Ellie was moving right along with everything as far as growth and development. But one night as I laid in bed with her on my chest, I felt that something was not right. A few days later, I noticed that as the day went on, her eyelid began to droop. By the end of the day, her eye completely covered her right pupil. When Nate came home, he noticed that her pupil was totally smaller than the other. We rushed her to the doc and he thought that her pupil drooped because of a benign cause and that her pupil was probably off and we didn't notice it until the eyelid dropped. I was back two days later because I was not happy with the "nothing is wrong" approach. They said, if we felt better, we could go see an eye doc. When Nate called the doc on the phone, she new what it was just from the description we gave her over the phone. We went in to see her and she gave us the diagnosis of a Horners' Syndrome. The two things combined, drooping eye and different dilation, mean that something is pinching the sympathetic nerve. This began our journey in the health care system.

A normal day in February

2009-02-22T18:54:00.000-08:00

Our three girls a couple of days before we found the horners syndrome.

Mother's Intuition

2009-02-22T18:19:00.000-08:00

One night, in February, I was laying there with Ellie. Nate was working late, and as I watched her and her movements, I just felt like something was wrong. I tried to keep the thought out of my head and thought it was from my fears of losing Eve. There was nothing wrong with her that I could see except she hardly was moving her right arm, which is something I noticed from birth, but I couldn't seem to shake my worries. my worries were confirmed the next day when she looked like she had a stroke. Our adventures began that day and the quest to help our little Ellie Marie through the challenges to come.

But I was so careful...

2009-02-11T22:07:00.000-08:00

I'm a bit of a germaphobe when it comes to my kids. I have taught them to push elevators with their elbows, flush toilets with their feet, and use paper towels to open the door. I didn't leave the house for weeks or go to church after Ellie was born for fear of her getting RSV. When the girls would get home from school, I would make them wash their hands and sanitize before they came near her. I went to my two month appointment at the doctors office and took all the necessary precautions. But a few days later, I noticed a slight cough and a wheeze. I debated, should I shouldn't I take her in. If she doesn't have it, she will probably get it, and if I don't, she could get worse. So, I take her in and sure enough, she tests positive. I'm trying not to be a baby about it but I tear up when the doc tells me it is positive. This started two weeks of suctioning and hospital visits in an RSV clinic. I don't get it, the more careful you are, sometimes it still doesn't matter.

December 2008, SHE'S HERE!

2009-01-30T22:24:00.000-08:00

In order for you to know what is going on, I need to start at the beginning. Ellie was born in December of 2008. She is our fourth little girl. During the pregnancy, things were a little rocky due to some pre-term labor and extra precautions taken because of what happened with Eve. At thirty-two weeks, she developed tachycardia, which is a fast heart rate. They almost delivered me but after monitoring me for a while, she slowed down. After that she developed a heart murmur, which they kept a close eye on. Until I gave birth a few weeks early. The birth was relatively uneventful considering my other three were full of not very fun surprises. Ellie came into our world cute as ever. This was such a blessing after our last experience. I felt like she was our miracle baby.