She must have gotten the memo that she needed to be a fighter because she jumped right into the ring battling menigitis during her first week of life followed by blood clots and an unexplained case of lymphedema (lovingly deemed "the mysterious case of thunder thighs").
Despite being considered an extremely high risk case, she not only survived her first open heart surgery on November 6th but did so well after surgery that she was discharged a few days before Thanksgiving after spending her first two and half months of life in the CVICU at University of Minnesota Children's Hospital.
Since coming home she's been holding her own and continues to grow every so slowly to get bigger for her next heart surgery sometime hopefully in April.
It has been (and will continue to be) quite the adventure. We recently reflected on the time that we received the news about Miriam's condition and how impossible it all seemed. There are days when it has felt impossible- not only for me, Mark and Eva but most of all for Miriam. She is one tough kid.
But when asked if I would do it all again, the true answer is yes. Even on the tough days when hope seems distant, we would have this little girl in our lives a thousand times over. Despite being a baby who doesn't talk, sleeps a lot and poops, she has had this uncanny ability to bring out joy in those around her.
A sign at the Ronald McDonald House where we stayed during her time in the hospital read: "We sat at the edge of the world and you ask me to tell you why and though a thousand things came to mind underneath them all was a quiet voice saying... because you remind me of everything in this world to love."
Even in the hardest days Miriam reminds us of everything there is in this world to love (and not take for granted) whether it be her sister, her father, her grandparents, the trees, the sky, and the people who have made their imprint in our lives.
How cool is that?
Though we have health insurance, we simply were not prepared for the amount of costs that are not covered. With one heart surgery under her belt and a minimum of two to go in the next year, she literally and figuratively has a "million dollar smile." Though insurance has covered a good portion of the costs, there are some procedures and expenses that we are only now finding out needed pre-approval or are only covered by our allowed limit. This in addition to the cost of gas to travel up to the Twin Cities for her weekly follow up appointments and having to reduce both of our work days to devote to her doctors visits has quickly added up. Jimmy Kimmel recently spoke of a government program known as CHIP that would have been a option for families like ours. Without assistance programs like these, Mark and I find ourselves in a financially challenging situation that we never imagined we'd be in. One begs the question then, how do you put a price on someone’s life? I guess you don’t know until you actually are looking at a medical bill that asks you to pay for the cost of saving it.
We are so grateful for those who have shown us support in all directions. We are being held up by those around us and will pay it forward when we can.
Please feel free to follow Miriam's journey here: https://www.caringbridge.org/visit/miriampeterson
Official diagnosis: Tretology of Fallot including: double outlet right ventrical, multiple ventricular septal defects (VSD's), pulmonary atresia, and right ascending aorta. 22q11 deletion syndrome (aka DiGeorge Syndrome).
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