While we try to teach our children all about life,Our children teach us what life is all about.

Sunday, February 6, 2011

Faith and Hope....

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Three years ago today, Morgan had her 4th open heart surgery. The last surgery in her palliative repair to her heart that would allow it to function as normally as possible. The days, weeks and months that followed that were so incredible difficult. It was the surgery we had waited for from the day of her birth. It mean so many things. It meant she had fought and survived and that she would be "fixed." Little did I know, that was not the path meant for our baby girl. Instead, that surgery mean lots of complications and a whole new path that we were totally unprepared for. For 30 days we sat in the ICU waiting for the "fontan fantasy" to come true. To see our little girl pink and full of energy and ready to take on the world. Instead, I learned a whole new way to live. She would leave the hospital and remain on a completely fat-free diet for six months. Trying to explain to her what that meant was just the start of the difficult task. Finding meals to help her NOT lose weight was the next phase. Finding a way to keep her skin from breaking down from the lack of fat in her diet was the next phase. And trying to keep a very brave phase knowing if I screwed up and she ate fat she very well could die was the worst part. Way to much stress for this Mommy to bear. Morgan did get pink....and for about 18 months we enjoyed the "healthy" little girl that we dreamed we would get at the end of the heartache of many surgeries and hospitalizations.
Around a year ago, we started to see this all become "undone." Her pinkness fades at times--using supplemental oxygen at home and school to give her body a break, she is back in heart failure--relying on diuretics to keep fluid away from her heart and lungs, and she lost the small amount of weight she gained after Fontan and continues to lose weight. We discovered that what we believed to be asthma for so long was really a progressive lung disease very similar to cystic fibrosis and requires it's own mountain of medicine to keep at bay. We discovered that her immune deficiency is quite comeplex and not only are her vaccination titers weak, but her body lacks the ability to make good IgA or IgB antibodies that combined with her lack of spleen, her immune system is much weaker than we originally thought. It has often left our doctors and ourselves scratching our head wondering what this means for Morgan's prognosis. In true Morgan fashion, she has never followed "the rules."
Her heart is considered "stable" and is actually the strongest of all her organ systems...so as scary as our journey was three years ago, it was well worth it!
If I have done anything to a fault it has been to research. I have contacted more doctor's and surgeons and scientists than I care to admit. I am always searching for the newest articles and studies done and will love the day I find another family JUST LIKE US. It hasn't happened yet, although I have met a couple of children that have anatomy very close to Morgan's. A couple of visits ago while sitting in an appointment with our immunologist, I asked, what about cord blood stem cells to stimulate her immune system. He contacted the Children's Hospital Oakland Research Institute and we began the planning to save Macy's cord blood for Morgan. We still are not sure if this will work, however, we have saved Macy's cord blood with HOPE that this may benefit Morgan. With cord blood HLA matching isn't as strict, however, since Macy was born we have learned that Morgan and Macy are considered a "good" match and 674 million cells have been harvested. They are currently being stored and Morgan's case is being researched at CHORI. When they have a plan that they feel will benefit us, they will contact us.
I guess what I find amazing about this is, nearly 8 years ago we started meeting with a team of doctor's at Children's Hospital Oakland and Stanford. They told us to have FAITH and we believed in them. Three years ago, when doctor's in Seattle told us there was nothing that could be done, we packed up our FAITH and headed back to Oakland. And sure enough....there was more to be done. And now, as we are facing a very new road with Morgan with little known research about Morgan's complex disease, we have sent our HOPE to Oakland, only this time to the Reasearch Institute.
With such rapid development in stem cell research it is really hard to say what all Macy's could do to save her sister. Morgan and Macy also have the same somewhat rare blood type of B+ while Braeden & Danica's are O+. It's amazing the way life turns out sometimes!
Today I have thought about everything I wanted to say today. Afterall, the "Fontan Fantasy" that we dreamed of didn't exactly go as planned for us. This has been way more complicated then we ever dreamed. There hasn't been a day that goes by in 8+ years that I am not searching and reading and learning about Morgan's complex anatomy. That is the time I would have spent in medical school and most days I have felt just as awkward as a Resident in the ICU. I do know this, having Morgan as a patient has been a complete joy and I'd rather write MOM after my name than MD any day!
So as I reflect back on these last three years or 1096 days, I have a choice to be sad that everything didn't go as planned or I can be thrilled that nothing went as planned and a little bit of HOPE was born and is snuggled in my arms while my little bit of FAITH is reminding me not to touch a sea otter cause they don't like their fur touched!
In preparing for this post I found a great quote....
When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown
As we start a new week, I ask you to open your minds and your hearts to the power of Hope and Faith...It's an amazing combination!
Morgan Faith and Macy Hope

3 comments

Huston Family said...

<3 friend no words can ever say what I feel, just know I love you and that beautiful family as if I'd known you all my life!

vlvv said...

Wow they are soooo grown up ! look at Braeden...I remember his first day of kindergarten. When I asked him what he was doing at lunchtime on the playground; he just looked at me and said, "Nuthin, Mrs. Stroh. I was just chasin' myself!" It is my favorite kindergarten moment ever.
I have just read your family story and i am moved. I know that motherhood is supposed to be challenging, but you seem to come through it with such grace and hope. I wish you all luck in the good fight.

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Beatiful Family

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