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BE AN ORGAN DONOR AND SAVE LIVES! Welcome to my web page. My mommy made this web page for me, to tell my story and to keep our family and friends updated on how I am doing. 
Analiese Ava
Born: November 25th, 2002 Weight: 6lbs. 14oz. Length: 19 inches 
Analiese's banner made with love by The Heroes Banner Site
My mommy, daddy, and my big sister Chelsey are so excited that I am here.
I was born with a rare liver disease, Embryonic Biliary Atresia (An obstruction of the bile ducts caused by their failure to develop normally before birth.)Biliary Atresia affects 1 in 15,000 babies per year in the united states. I also have Polysplenia syndrome [I have multiple spleens (7), my heart is mid-line and rotated, 2 bi-lobed lungs, 2 superior vena cavas, an interupted inferior vena, a pre-duodenal portal vein, appendix found on wrong side of the body, liver lies transverse, malrotated intestines.]Polysplenia affects 1 in 150,000 babies.
I had my first surgery at 7 weeks old, the kasai procedure (hooked my small intestine to my liver to try and promote bile flow.)It was unsuccessful. I also had an appendectomy, and the Ladds procedure to fix my intestines.
I was placed on the transplant list when I was 4 months old. On July 6, 2003, I received the gift of life, a liver transplant. I had a complication from my transplant. My phrenic nerve was severed which caused my diaphragm to be paralyzed. I had to have a tracheostomy done and I came home from the hospital 2 months later on a ventilator.
My mommy says that I am a true Miracle. I continue to amaze everyone at how well I have bounced back.
Journal
Tuesday, February 10, 2009 10:32 AM CST UPDATE:: Analiese is home, she didn't even have to stay overnight! She seems to be perfectly fine, her neck is sore but that is about it.
They ended up putting a patch over her eardrums to close the holes left behind from the ear tubes. I asked the doctor why her tubes never fell out on their own, and he said that in 2 percent of kids they don't fall out, and they don't know why... So of course Analiese falls into that 2 percent.
They were able to remove the cyst and it looked like a fatty cyst, or a part of her thymus. The doctor said not to worry about the pathology results, because it did not look malignant. She is such a little trooper, she cried because she wanted to stay overnight in the hospital.
Tomorrow Analiese will be going in for surgery. She will be having her ear tubes removed, another stomaplasty (reconstruction of her tracheostomy scar), and have a cyst removed that is at the bottom of her neck right above her breast bone. If everything goes well she will remain in the hospital overnight, and then be able to come home on Thursday. The main reason for keeping her overnight is that she could possibly get an air leak, if this would happen air would get into her chest cavity and she would not be able to fully inflate her lungs. Hopefully, that will not happen.
I asked her last night if she was nervous about going to the hospital and having surgery; she said "no." And looked at me like I was crazy. She is so brave.
I also wanted to let everyone know that Analiese is going to be a big sister. Yes, I am pregnant. This was definitely a shock, and very unexpected. The new little addition to the family will be due in late August, or early September.
I will update about how the surgery went we return from St. Louis. Please keep Analiese in your thoughts and prayers.
Read Journal History
Hospital Information: St. Louis Childrens Hospital
One Children's Place
St. Louis, Missouri
Links: http://www.liverfamilies.org A wonderful support group on liver disease, and liver transplantation.
http://www.unos.org United Network for Organ Sharing
http://asso.orpha.net/OFAVB/__PP__4.html Biliary Atresia link
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