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Emma Marie - A True Miracle "httpwww.snugglepie.com">
Welcome to Emma's Web Page. It has been provided to keep people updated about our EmmaMarie. Emma Marie was born with a rare liver disease called Biliary Atresia which means while she was in utero her liver either grew incorrectly or was infected which caused the bile ducts to shrink, which caused the bile to not have proper flow from the liver. Emma was born on August 5, 2003. She weighed 6 lbs. 10 oz. and appeared to be very healthy. However, within 24 hours her blood sugar dropped to 9 (it was supposed to be above 30). That was our first of many scares on our journey with Miss Emma Marie. At 3 weeks of age Emma bagan to show signs of liver disease (including jaundice, lethargy, lack of desire to eat). We were sent to Denver Children's Hospital when Emma was 6 weeks old. That was the longest trip of our lives!! Emma was diagnosed with Biliary Atresia, and the Kasai was performed a week later. That operation was to attempt to give her liver a different drainage system and allow Emma time to grow before the possibility of needing a transplant. However, the surgery did not work. We went to Denver again at the beginning of December for transplant evaluation. At that time they discovered the minor defect in her heart that she was born with (they originally told us it would close on its own), would need to be operated on. It was causing pulmonary hypertension, and if they could not find a way to control it then Emma would not be able to be listed for transplant. The thought that our little girl could die once again struck us and we were devastated. However, once again she proved what a strong child she was. She had her heart cathederazation on Dec. 10. They found that oxygen made her pressures go down. She was listed for transplant on January 20. YEAH!! In the beginning I never thought I would be excited about her being listed, but now I knew the alternative and that was DEFINITELY not what we wanted.
Emma Marie received her gift of life on March 19, 2004. She was 7 mths. old and she weighed only 11 lbs. She received her liver from a 17 year old female (we pray for her family every day. What a gift they have given to us!). Emma went through the surgery very well! She looked like she was on the fast track to recovery!! However, one week after tx she developed 2 bile leaks and 2 infections (E-coli and interbactrim). Our world once again was spinning!! Emma had to go back in for surgery on March 27 to repair the leaks. She was so weak going into it that we worried about her being able to make it through. She came through it beautifully. She did need to stay ventilated longer, and she was on oxygen for 5 months.
Today, she is almost 6 months post tx. Sometimes I wonder where time has gone. Emma is almost 13 months old!!! She is a beautiful, PINK little girl full of laughter! Although Emma is a little delayed, she is constantly making gains! She is the joy of our lives!! Although I would never have dreamt our child's first year would be this eventful, I am so glad we were the family chosen to raise our wonderful child! We have learned so much about love, patience, caring, and the miracles that come to us every single day!! Thanks for caring about Miss Emma Marie!
Emma Marie's Banner made with love by The Heroes Banner Site
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Journal
Monday, September 19, 2005 4:24 PM CDT
What a wonderful weekend! We had the pleasure of being involved in my brother-in-laws wedding. It was in Montana, and it was absolutely beautiful!! The leaves were changing, and they had all of the fall colors! Emma was the flower girl, and Tim and I were both in the wedding also. I cannot express the broad range of emotions that went through my head while Emma walked down the isle! She was like a little angel....and in so many ways she truly is! I thanked my lucky stars that she was there with us. Needless to say, a few tears were shed by me at the wedding....and it wasn't the "usual" wedding tears! I just love her so much!!!
She is doing GREAT! Thanks for stopping by:)
Angie
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