How far we have come...

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!

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

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!

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

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!

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!!!

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.