Emerson (Colorado)

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. After being told she had 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 also would need to remove half her stomach & all her spleen. The 5 year survival rate is 60%. The surgery was to be done in Omaha, Nebraska as no hospital in Colorado performs this type of rare, complicated transplant surgery. Post-transplant we (Eme & I) would be required to stay in Omaha a minimum of 6 months for follow-up care & close monitoring.

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!

We received “the first call” Wednesday, June 18, 2008 & Emerson received her first gift of life in the early morning hours of Thursday, June 19. The surgeon removed her large bowel, spleen, and 2/3 of her stomach. She transplanted her small bowel, liver, and pancreas. All organs were from a single donor of similar body size. We are so thankful to the donor family and think of them often through this difficult time. Eme’s journey didn’t end there…rather, it was just beginning. The surgery was the “easy” part, it was the recovery ahead that proved to be very difficult.

Emerson did well initially post-transplant then fell victim to a series of very severe & life-threatening infections. She spent most of the 7 months following transplant in the PICU fighting for her life. She coded, experienced 3 episodes of renal failure, many episodes of lung failure, heart complications, and more. She was on and off dialysis and the vent. Emerson contracted her most serious infection the week of Christmas, 2008. We were told she had only a 50/50 chance of surviving through the week. On December 31, 2008 Eme lost her transplanted bowel. It had died and was removed via emergency surgery on New Year’s Eve.

Emerson was gravely ill and the outlook was grim. She would need another transplant to survive, but was much too sick to even consider it at that point. Our little girl is a fighter, though, and has battled back – proving to everyone she’s not ready to leave us yet!
She was re-listed for multiple organ transplant on April 1, 2009. Exactly 2 weeks later, on April 15 (Daddy’s Birthday), we received “the second call”. At 1am April 16, 2009, Emerson was wheeled into the operating room where she received her second gift of life – a small bowel, liver, pancreas, AND 2 kidneys. She is only the second child at this hospital to re-transplant all organs within the first 12 months. The first child, sadly, did not survive. The risks are high and the months ahead will be difficult. In the first 6 weeks post transplant #2 she’s already been back to the operating room 4 times. She’s been on the vent most of that time & was on dialysis for over a week. Today, though, she is sitting up in her crib watching Tinker Bell & breathing on her own! Emerson is doing well & we remain confident she’ll overcome the many obstacles still ahead.

We are overwhelmed with gratitude for the family and friends who have gathered to raise funds on Emerson’s behalf. We are especially indebted to Amy Howarth, Melanie Oliver, & Cherie Parker for selflessly taking on the challenge of organizing her campaign, and also to Katie Vanis for organizing events here in Omaha. Everyone should be so fortunate to have such amazing friends in their life – we are truly blessed.

We are also forever indebted to the remarkable families who, in their darkest hour, chose organ donation. We can never know the heartache they carry with them every day. We can only thank them for sparing another family that same pain & for giving our daughter a chance to survive. We encourage you to consider organ donation and to discuss it openly with loved ones. It is the greatest gift you can ever give – the gift of life.

In all, thanks to everyone for your continued support – emotionally, spiritually, & financially – together it gives us the strength to face each day and the power to dream for a brighter tomorrow!


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