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.
"Sometimes the pattern of life seems monotonous and discouraging. It is like climbing a mountain and after reaching the top, getting knocked back down to the bottom to climb it again; but I guess the fun is in the climbing and not the arriving!"-Marjorie Pay Hinckley
Our Family
Nate, Becca, Macy, Adrie and Ellie
Ellie's Story
I am the author of this blog, my name is Becca and this is our story. My husband and I have four beautiful girls. Macy, Adrie, Eve (who was stillborn) and Ellie. Ellie is the reason for this blog. She was born with a neuroblastoma in her neck and a coarchtation of the aorta. She has congenital heart disease and severe cardiomyopathy due to a late diagnosis. We are hopeful of the outcome and wanted to share our journey with family and friends. I wanted to update her status as of January 2010. Ellie has physically done well despite her heart not seeing any improvement. We are still in limbo of whether she will need the transplant, but we are hoping to avoid that. The tumor was shrinking, but after the last scan appears to be slightly larger. We have a follow-up MRI in February, so wish us luck on that. She is one year old and talking and trying to stand on her own. She is such a joy to us and her sisters and keeps us all entertained.
Macy
Macy is such a bright personality. She loves to take care of her siblings and is the perfect non-rule breaker. She is such a good example to her little sisters and is very nurturing.
Adrie
Adrie is our spitfire and Is our drama queen of the family. But she is extremely tender hearted and is very observant of others and their feelings.
Eve
"Some people dream of angels, we held one in our arms."
Ellie Marie
This is Ellie! She is the reason behind this blog. She is the bravest strongest girl I know!!!
Claire
The baby of the family of all girls! She has been such a happy go lucky child. She keeps us laughing with her cute and fun personality!
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. 
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