Lizzy (Nebraska)

Lizzy was born 6-29-07. She was 2 weeks over due. She weighed in at 9lbs 12 oz. She was a chunky and happy little girl. She was one of the best babies. She was always doing good on her weight and height the only problem we had was she was yellow. She had many labs drawn and often. At about 2 months they split her bili lab up and found out that her direct was what the problem was. They called and said that we needed to get to Children’s Hospital in Omaha as soon as we could for some further testing. So we head to Omaha and found out that we were being admitted for the testing. We go thru test after test and they come back with Biliary Atresia.

She had a Kasai to help her liver drain on 8-29-07 on the day she turned 2 months old. We did well for a while she was hitting all her developmental milestone. In October though she got a bad case of colingitis and had to be life flighted to Omaha. We were in the ICU for 1 month. Before the life flight we know now that she suffered a time of oxygen loss. She now has an anoxic brain injury due to oxygen deprivation. She has seizures now due to that brain injury. During this time along with the brain injury she lost all gains she had made with the developmental milestones. She was then on a ng tube for feeds as it was the only way she could get enough to meet her needs. We have had 4 life flights all in all. On June 29 2008 on her first birthday they placed a G tube as she was a lil stinker and kept pulling the ng out. The week prior to that we had went for transplant evaluation as her labs were not looking so good and things were just starting to go down hill. On July 1 2008 the transplant office called and said that after the eval they had decided not to list her at this time, not even an hour later the transplant doc himself called us back and said the more he thought about it the more it didn’t sit right with him and they were going to go ahead and list her with a -10 as her score.

On July 11 2008 we got THE CALL. Only 10 days after being listed we got the call that they had a liver for her. She did real well during transplant they had to go back in once within the first 5 hours out of surgery due to a clot in her portal vein. Other than that things went great. She has been doing wonderful since transplant we have had a few overnight stays since but not many. And knock on wood we have been over a year and a half now with no overnight stay. She is now 3 and doing wonderful. She has yet to sit or crawl but she is here. She goes all over though rolling here and there and even has the bald spot on the back of her head to prove it. But again she is here and we have been told more times than we wanted to hear she wasn’t going to make it so having her here is the blessing in itself. I will take it. Since transplant we have also had a rare chance that not many organ recipients get. The first year after transplant we wrote back and forth to her donor family many times and in June of 2010 we got to meet her donor family.

It was an emotional day but very happy too. It was a shocker to find out that all along they were right here too as they are from Omaha as well. Thanks to their unselfishness in their darkest hour my lil girl got a second chance at life, and for the reason alone they will always be in our hearts, family, and in all that we do. They are a wonderful family and strongly support organ donation and Children’s hospital. The friendship that we have formed with them will last a lifetime. If anyone has any question on our journey or just want to visit feel free to message me. I love sharing our story and all as going thru it all talking to the ones that had been there is what gave me the will to carry on when i thought all hope was lost. God Bless each and every one of your families.


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