The Ten oclock news!

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!

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!!!

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!!!

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)

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!!!

Wordless Wednesday!