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Jan 1, 2017
Welcome to Caring Bridge and thank you for your interest in my daughter's health and well being. My idea of creating this is to reach as many people as I can with a quick click. My daughter Hanna, as many of you know, has Biliary Atresia and is now in need of a liver transplant. It actually pains me to write this because as I am looking back now, my eyes are tearing up because I can't believe we have come this far and what we have had to endure the past six months. Now don't get me wrong, my husband and I know it could always be worse and I truly believe that, but it is still very painful when I take the time to gather my thoughts and write about it.
After two days after her birth, I remember looking at Nils and saying so this is what it feels like to have your baby stay in your room at the hospital. You see my twins boys Anders and Henrik were born just a little bit early and stayed in the NICU for a couple of weeks learning to feed. So we spent a lot of time in the NICU caring for our boys. Well literally after I said that, the nurses came in with the Doctor and told me Hanna had to go to the NICU for tests, her bilirubin (liver levels) were raised. Well I guess I don't have to get into detail on how much that affected my overall mood that night. Even though we were sad about this news, the next day we were notified that they were testing for everything under the sun. Nothing came back definitive. Days turned into weeks and the final referral was to the University of Minnesota's Children's Hospital in Minneapolis, MN. We were to complete a liver biopsy which concluded she has this awful liver disorder Biliary Atresia, no bile was going through the liver. After that diagnosis we schedule a major surgery called the Kasai procedure to try to allow for more bile flow, fast forward to last month and the Doctors concluded that it was not successful.
We were sent home after the procedure only to be sent back a couple days later because of a very serious infection. We were sent back home a week or so later to administer IV antibiotics and administer lots of supplements and medications. This was and still is our new life. Our Hanna is a strong one, and in fact has remained quite stable and has grown into a 50% percentile growth curve.
This is very important because getting a liver transplant can be a bit easier if the baby is bigger! Bigger is Better! Hanna is now 6 .5 months old and is almost 17 lbs. She is a bright eyed, happy, funny, social little girl who loves her brothers and her dog. She makes people talk to her in Doctor offices, literally yells at them til they turn and smile at her. I have never had a kid to captivate the love and affection from just complete strangers. Even the Doctors are so happy with her and nurses come in to see her even they aren't Hanna's nurse, it is really something.
So now that we are talking about transplant we headed down to the Mayo since it is only 2 hours away. We area really impressed so far especially with Hanna's new Doctor, who just seemed to be so supportive and so concerned about Hanna's well being. Hanna is now listed on the United Network for Organ Sharing (UNOS) website. Unos.org. Her blood type is A and so knowing that Hanna may wait many months for a liver and therefore have her health decline, I have been getting evaluated for becoming a liver donor. I am still in the process of that. We just want all of the options on the table for her to fight this horrible disorder. So that is it in a nutshell, obviously realizing that this doesn't scratch the surface of our family's anguish, concern, heartbreak, worries, anxiety, fear, resentment, and or hope.
Thank you for all who have stuck by us and has offered hope and support, it has meant the world to us.