It was on this day in 2008 that we heard the words "biliary atresia" for the first time. I can remember it like it was yesterday. Sarah had visited her pediatrician for her two month appointment and for some reason, the doctor didn't like the fact she was still jaundice. She ordered complete labs and Patty waited at home for the results. I was finishing my second week at a new employer when I returned home. Patty was just completing a call with Dr. Gan and she looked at me and said, "We need to take Sarah to Children's ER right now."
I still remember the looks on our other three kids' faces. Patty had planned a pajama movie night and was getting them all settled in with some popcorn. We called my parents and took the kids over, pajamas, popcorn and all. We didn't know it would be almost two weeks before we returned home. I'm recalling those days and the singular focus of Sarah's well-being and it brings great pain to my heart. It's not only because Sarah was diagnosed with a life threatening disease. The time I lost with the other kiddos; not being to explain what was happening; completely consumed in life at Children's through the Kasai. It's only God's grace that they weren't traumatized by our absence. My parents moved to Washington for the sole reason of sharing life with their only grandchildren and watching them grow. This proved a major godsend through the entire ordeal. But I digress...
When we entered the E.R. that evening, we had no clue what was in store for Sarah or for us as a family. When we were greeted by the staff - "this must be Sarah!" - we knew things were far from normal. I clearly remember the first time I heard "biliary atresia" uttered by one of the E.R. docs. I immediately ran a search on my laptop and didn't like what I saw. In fact, when the doc saw my face,she said something to the effect of "Do not read that out loud." I remember being in a fog most of those first ten days at Children's Hospital. Over the next couple of weeks, I'll be reflecting about the days that changed our lives forever.
Yes, losing the time with our other children was so hard. God has redeemed our lost time though in that all of our children are doing so well. God is so faithful to us and I am so grateful for His provision before we knew we needed it. Thank you Jesus for Seattle Children's Hospital, family, friends and an amazing outreach to us from surrounding churches.
ReplyDeleteThat's why the Lord never reveals what is to come in our lives. He asks us to walk by faith, then promises to be with us when we walk through the valley, and promises to uphold, to hear, to help, to comfort. He is a great God! May you continue to feel His presence as you continue to cope as a family.
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I can relate to this horrible situation. My daughter is 5 months now and also was diagnosed with Biliary Atresia and also got the Kasie procedure. We are going thru a lot of stress and is now waiting for her liver transplant. I am a desperate young mom my husband and I are only 20 and we are very desperate to get opinions.
ReplyDeleteMy now six month old baby girl was diagnosed with biliary atresia on January 5, 2012. I did not know anything about BA. Right after she was diagnosed, i google BA and I remember been so scared of losing my then, 4 month old baby. She had a kasai but was not succesful. I was told by doctors at Kaiser that they doubt that she was going to make it until liver transplant. She was transferred to CHLA where they have a great liver transplant team. Living liver donor was an option and on February 2, 2012, she had her transplant. I donated 1/4 of my liver to Jayleen and now, a month and a half later, she is doing great! And i have faith in God that she will continue to be well. It is very hard now but i know it will get better once the doctors cut down on her medications and allow her to go out to places. She is such a happy baby. People who do not know she recently had a liver transplant, would never guess what she has been through. I now recall been so scared and confused because it is very difficult. My husband and i, have three children (jayleen been the youngest), and it was hard caring for the baby and having to leave the other two kids with relatives. She was hospitalized for nearly 2 months since her first surgery. To all of those who have babies with BA, i tell u.. "there is hope! Have faith! Believe God, we have a good & gracious God! And think about been a living liver donor, help to save your baby life, its worth it.. My daughter smile is priceless and i would do it again if i had to.. God bless you all"..
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