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Let’s start from the beginning. Pregnancy was a blessing and we were ecstatic to be bringing a beautiful life we created to the world. In our 20 week anatomy ultrasound we were met with some life changing news. It started with “we can’t see the other side of her heart” to 3 Dr. appt’s later we had a diagnosis. Truncus arteriosus, a diagnosis that would change our lives forever. Blake’s diagnosis was a surprise, we were extremely fortunate to find this out before she was born.
Truncus arteriosus is a rare heart defect that's present at birth (congenital). It means that one large blood vessel leads out of the heart. Normally, there are two separate vessels coming out of the heart.
In addition, there is usually a hole — known as a ventricular septal defect — between the two lower chambers of the heart. As a result of truncus arteriosus, oxygen-poor blood that should go to the lungs and oxygen-rich blood that should go to the rest of the body are mixed. This creates severe circulatory problems.
Sounds easy......right? For a 7 day old newborn we were just accepting the time we had not expecting much. All we ever asked the Dr.’s to do was “their best” and to try to keep her alive. Blake beat all the odds and fought every day to breath, learn to eat, and try to be like any other newborn. 6 weeks later we were home on a NG tube and a nursing station in our kitchen.
Clearly we succeeded because she made it to 5 years old with just 3 heart cath’s and the original conduit they inserted which is extremely rare. So here we are at the next stage she has beat the odds again with her second open heart surgery and a 3 day stay in the hospital. With surgery, hospital stays, never ending Dr’s appts and only so much insurance coverage comes the financial strain. Which leads us to this go fund me.
Blake is our super hero, to most its Captain America, or spider man. But she has made it though more in her 5 years on earth then the average person goes through in there entire lives. Not just that but she did it with a smile on her face, she is fierce, driven, and doesn’t let anything stop her.
Us as a family appreciate any contribution’s, and genuinely thank you for being with usin our journey that is Blake’s life.
With love, The Bute Family

