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1/25/2017 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support, prayers and encouragement during this difficult time. Thank you for visiting. Our Dannika is scheduled for open heart surgery on Thursday January 26th down at Rochester Mayo. She has a condition called Ebsteins Anomaly which is a rare congenital heart defect. Basically she has a malformed heart valve that does not properly close to keep the blood flow moving in the right direction. This causes her blood to leak from the lower to the upper chambers on the right side of her heart. She also has an ASD which is a hole in the wall that divides the two upper chambers of the heart. We feel extremely blessed that we have Dr Dearani to perform her surgery. We have surmised from our research that he is one of the worlds top surgeons performing this very rare surgery and we feel very lucky that he agreed to take Dannika's case. Heart issues are nothing new to Dannika. She truly is a walking miracle. When Dannika was born we had no idea she had so many heart defects. We brought her home after 24 hours agreeing to bring her back for her bilirubin test the following day. When we brought her back to the hospital for the test, her bilirubin had raised so they admitted her to St Francis and she went to the incubator. Quite quickly her levels shot up to dangerous levels. They then arranged her transport to Childrens Hospital to do a blood transfer. While at the hospital, just by happenstance, they decided to check her heart and she was then diagnosed with Coarctation of the Aorta, ASD's, VSD's, a bicuspid valve and a malformed tricuspid valve. We were shocked and saddened to say the least. It was determined she was in heart failure and her first surgery was scheduled for her 9 days later. The nurses then started calling her the miracle baby because they said most infants with her issues pass away as its not something obvious and thank goodness she had the bilirubin issues. She spent a month in Childrens Hospital recovering. She had another surgery at age 3 to reopen the aorta. Other than that we made our yearly trips to her cardiologist and she has always gotten a good report until this new issue. Dannika is such a strong, brave girl. We nicknamed her Willow as she bends but never breaks! She has never given up on anything, never made excuses or felt sorry for herself. She has just fought harder to overcome any obstacle that got in her way. Not only does she overcome issues, but she does it with more joy and more light than any other person I have ever met. She is led by her Faith in God and her faith in the goodness of people. We truly want to thank everyone for their support of Dannika and our family during this difficult time and we would just like to ask for your prayers, lots and lots of prayers.