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Mirabelle Winter Philippi
8/26/2016 Latest post:
Mirabelle joined our family on Tuesday, August 16, 2016. She needed some help breathing in the NICU after the C-section, but was doing well within a few hours. She was supposed to join us in our hospital room the next day and go home with us the following day. Wednesday her oxygen levels were slightly down so they wanted to keep her for observation another night. By Thursday she was requiring oxygen again. By Friday the doctors were able to determine she was having seizures that weren't outwardly obvious and put her on medication. Saturday and Sunday were good days, but by Monday she was having more seizures and would stop breathing as a result. Tuesday night they started a second medication and she has been doing better since then.
Wednesday morning (August 24th) we received some difficult news. We had sent off some genetic tests for Mirabelle, and her screen came back positive for a spectrum of disorders called Peroxisome Biogenesis Disorders. The geneticist here consulted with a specialist at the U of M, and they believe with her early onset and the seizures, she likely has the most severe of the spectrum called Zellweger Syndrome. It is extremely rare. There has been a confirmatory test sent and we will receive results next week. If she is positive, her time here with us will be limited. She may have only a couple weeks or up to a couple years. We are heartbroken that our baby girl has to go through this. We are hanging on to hope that she falls somewhere lower on the spectrum. We are focusing on the positives and every minute with this angel is a blessing. Please keep the prayers and positive energy coming.
We have already had a bunch of fun memories with our Mirabelle. She loves sweeties, which is the sugar water the nurses give her before any test or procedure. She smacks her lips and opens up wide for more! She loves snuggling with mom and dad and her oxygen levels are always the best when we hold her. She teases us when we change her diaper and pulls her legs up high so we nicknamed them frog legs, and it makes us laugh every time! Mirabelle has had so many visitors and loves meeting all her family and friends. But most of all she loves getting her soft and fuzzy head rubbed :)
We will do our best to keep this page updated with the latest on Mirabelle. Thank you all so much for you support, love and prayers