Emerson’s Story 

"Each day, well-lived, makes yesterday a dream of happiness and each tomorrow a vision of hope. Look, therefore, to this one day, for it and it alone is life."

- Sanskrit Poem

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Emerson was God's plan. There's not much I know, but that I'm sure of. We were nearly 2 years into an adoption from China (and only months away from traveling there to bring our daughter home), when I discovered I was pregnant. We had done everything to avoid this, so the news was both shocking and overwhelming. As the months passed we put on hold, then eventually cancelled the adoption. While I had seen our family as 2 biological boys and a Chinese little girl, God had a different plan.

Emerson Nicole (Eme) was born on 9-12-06. She was induced 3 weeks early, ending a long & difficult pregnancy for Mom! We knew she would not be born healthy, but could never have been prepared for what lay ahead. We were told Eme would be born with the same medical condition as her brother Bradley. What could not be known, though, was how she would be affected. It's not uncommon for siblings with the same genetic disorder to present very differently in terms of severity. Emerson, unfortunately, is more affected than Bradley.

She has a primary metabolic disorder. It has caused many problems in her short life, including seizures, severe hypoglycemia, anemia, & developmental delay. Most significant, though, being complete intestinal failure. As such she is unable to eat or drink by mouth and receives all nutrition via a surgically placed central catheter (central line) into a major blood vessel by her heart. Unfortunately, Eme has developed life threatening complications from this type of administered nutrition, including permanent liver damage, clotting off of major blood vessels, and repeated episodes of sepsis. We were recently told she has only 6-12 months left to live. In an attempt to save her life, she was evaluated and accepted for multiple organ transplant – liver, pancreas, & small bowel. They'll also remove half her stomach & all her spleen. The 5 year survival rate is 60%. The surgery will be done in Omaha, Nebraska as no hospital in Colorado performs this type of rare, complicated transplant surgery. Post-transplant we (Eme & I) are required to stay in Omaha a minimum of 6 months for follow-up care & close monitoring. Emerson is in-patient at Denver Children’s Hospital & has been here since February 7, 2008. We're now anxiously awaiting “the call” at which time she’ll be flown to Omaha for her second chance at life.

On our journey, we have met some of the most amazing doctors and nurses. I could not even begin to explain or understand the love & compassion they have for children. I only know we are so blessed to have crossed their paths. Emerson truly is in good hands!

When home, we struggle with the daily routine of changing tubes, mixing IV nutrition, & administering meds, and the daily worry of when the next crisis will come - each one turns our life upside down. One thing is for sure, though - if this is the only way to have her in my life, I would do it over and over again. I couldn't imagine a world without her smile! She is the strongest, most beautiful little fighter I've ever known. I'm not sure why we were chosen for this journey, but hope someday to make sense of it all. For now, we will take each day as it comes & be thankful for every moment we are given with her!

Update (Mar 31, 2009): 

Emerson received her gift of life on June 18, 2008.  She did well initially post-transplant, then fell victim to a series of very severe & life-threatening infections.  On December 31, 2008 Emerson lost her transplanted bowel.  It had died and was removed via emergency surgery on New Years Eve.  Emerson struggled to survive from that moment - the outlook was grim.  She showed her fighting spirit, though, and has spent the past many months proving she is not ready to leave us yet!  She is currently relisted and waiting for her second multiple organ transplant - liver, small bowel, pancreas, & (this time) kidneys too.  The risks are high, but again we are confident she'll overcome the odds. 

Many thanks for all your prayers and support!

Update (May 31, 2009):

Emerson went active on the transplant waiting list April 1, 2009 & received her second gift of life on April 16th.  This time she was given a liver, small bowel, pancreas, AND 2 kidneys.  She's already been back to the operating room 4 times since transplant and has spent most of the past 6 weeks on the vent.  The road ahead will be difficult, but she's a fighter & we know she can do it!!

Much more to come...