Sunday, November 28, 2010

THANKFUL #28- MIRACLES

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.


Saturday, November 27, 2010

THANKFUL #27- FOOTBALL

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.

Friday, November 19, 2010

Thankful #19-Birthdays!

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.

Thursday, November 11, 2010

THANKFUL- #11 Patience

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

Tuesday, November 9, 2010

THANKFUL #9- MACY

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.

Monday, November 8, 2010

Ellie's Shortened version of "Her Story"

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.

Sunday, November 7, 2010

THANKFUL #7- ADRIE


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.

Saturday, November 6, 2010

THANKFUL #6- INSURANCE

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.

Friday, November 5, 2010

THANKFUL #5-Sunshine!


"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!

Thursday, November 4, 2010

THANKFUL #4-Medication

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.

Wednesday, November 3, 2010

THANKFUL #3 Claire Hope

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.

Tuesday, November 2, 2010

Thankful #2


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.

Monday, November 1, 2010

Thankful #1


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!

Sunday, October 31, 2010

We're Back...

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...

Thursday, September 16, 2010

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.

Wednesday, September 15, 2010

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!

Monday, August 23, 2010

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.

Thursday, August 19, 2010

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!"

Wednesday, July 28, 2010

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.

Friday, June 4, 2010

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!




Sunday, May 30, 2010

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"

Wednesday, April 28, 2010

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.



Saturday, April 17, 2010

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.

Friday, April 16, 2010

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

Wednesday, April 14, 2010

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.

Sunday, April 4, 2010

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.

Tuesday, March 30, 2010

Baby Steps!!!


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.

Saturday, March 13, 2010

Reality Check!!!

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!!!

Thursday, March 4, 2010

Good News!!!

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.

Tuesday, March 2, 2010

Ellie's MRI tomorrow!

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.

Tuesday, February 16, 2010

W.M. Awards- I won!!!


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.

Monday, February 8, 2010

It's CHD Awareness Week!!!

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.

Thursday, January 28, 2010

So, we're back!!!

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.