Today our Princess turns 5 and we are so thankful and blessed. It has been a truly amazing 5 years and full of lots of highs and lows, valleys and mountains, and so much more.
Our daughter was born with biliary atresia which means that her bile ducts inside/outside of the liver did not develop properly and while there are a few treatment options if detected early enough, her first pediatrician did not diagnose her jaundice properly so we didn’t find out until she was 3 1/2 months of age. One night she wouldn’t put any pressure or move her left leg so we took her to the local urgent care facility and after tests and x-rays, the doctor told us that he had good news and not so good news. Of course as new parents this is always what you want to hear…NOT!! 🙂
The good news was that her leg was fine. The not so good news is that she had a liver disease and while he wasn’t able to determine the specifics we needed to visit the local Children’s Hospital for further testing. That led to an 8 day stay in which we had a battery of tests because there are a host of other diseases that present in the same manner including neonatal hepatitis and AIDS so we had to have HIV and Hepatitis tests which even though we both knew we weren’t infected makes for interesting hospital chatter.
Through everything it was confirmed that she had biliary atresia and she needed to have a liver transplant because a Kasai wouldn’t work and she was listed for a liver. You can read more about the whole journey at her CaringBridge site which is linked on the sidebar.
Our faith in God really carried us through this entire journey and continues to provide us with the strength that we need to endure each day. We were married within 6 months of meeting one another and then were pregnant within 4 months of marriage so this was a lot on us as a newly married couple but it only served to draw us closer together and we give all praise to God for that because we know things could have turned out far different.
Our daughter did receive a transplant and we are forever grateful to her donor family that in the time of their despair they chose the selfless act of giving of her organs so that others may have life and have it more abundantly.
Princess A is a healthy, active and gem of a girl that brings joy and love to all she meets. She is a sensitive child and also very loving, gentle, and thankful for the smallest of things. She is fully aware of all that she has been through and often goes through the pictures of her times spent with feeding tubes and hospitalizations and ask questions and then re-tells the story to her brother and anyone else that will listen. She is only on 1 medicine which is awesome compared to post-transplant when she was on 14 and I was in the early stages of being pregnant with her brother. 🙂 There are still blood draws every 2 months to see how her liver is doing and how her body is handling her immunosuppressant but all in all she is doing GREAT!!!!
We had a party on Sunday to celebrate so we are taking it easy today with a few shopping trips to purchase her a Bible and then we will probably do lunch out and enjoy the park and just enjoy life.
Your prayers are appreciated for her continued health and the health of all of the other little kids with this disease and other diseases as well as for their families as they walk the path that has been laid out for them. Also, please pray for her donor family and all others that give selflessly of themselves and their loved ones so that others may have life. Prayers and Blessings!!!
Here are a few pictures of the journey and for more recent check out the Flickr sidebar:
Princess A in bassinett
Princess A with her feeding tube
Princess A in the hospital