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Challenge: NICU Parenting

When life takes an unexpected turn. Aubrie's story.

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May 31, 2017 Aubrie was born full term perfectly healthy. At 3 weeks old we rushed her to the ER because she was extremely sick with what we had assumed was a virus, an infection etc. But we didn't expect what we were truly in for. That ER trip landed us 40 days in the NICU. During that stay she was diagnosed with 2 blood infections, 2 blood clots, and severe liver failure. And no one knew why. No one had answers. Every test you could think of was ran. Every idea the doctors had was exhausted. She was under the care of the NICU as well as 3 other specialists. She was evaluated for a liver transplant and we were sure we weren't leaving without it in the plan for her future. Over time she improved and got well enough to avoid a transplant and come home while we waited for a potential answer. She was 8 weeks old when she was finally discharged. October 10, 2017 we got the call and the official diagnosis. Aubrie has a genetic disease called Hereditary Fructose Intolerance, her liver cannot process fructose causing it to build up and destroy her liver and potentially other organ systems. Here we were 5 months ago thinking we were home with our perfectly happy and healthy baby and things couldn't be better. Had we known from the start she never would have ended up so sick. and thankfully with an extremely strict diet we can keep her as happy and healthy as she is today and she will live a long normal life like anyone else. Despite all odds she's thriving and a complete joy. She's truly a fighter, snd a miracle.

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