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preemie

preemie, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: Not Ok Holiday

I took a little blogging holiday over the holidays. There was a lot to process and I couldn’t quite bring myself to form my thoughts and feelings into words. First, I found myself reliving my delivery and NICU experience as we celebrated Obi’s first birthday, only now I was able to apply the Williams Syndrome lens to what happened. This made me feel the need to go back over every painful moment to see if knowing about the WS might somehow change how I felt at the time or the decisions we made. Those were dark days, and reliving them…

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Williams Syndrome Wednesday: The Joy Edition

I wrote an entirely different post. But when I read it, it was well… sad. You see, it was this time last year that things started to go south fast in my pregnancy. Warning signs lead to tests lead to hospital bed rest lead to more failed tests lead to worry about baby’s safety lead to emergency c-section lead to Christmas, New Year’s, my birthday in the NICU lead to home on RSV season house arrest lead to a laser focus on Obi’s delays lead to tests lead to diagnosis lead to more tests, therapies, adjusting to the new normal….

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Williams Syndrome Wednesday: Not all news is bad news

Williams Syndrome baby no heart issues

A little update on the little miss. Obi met with cardiology today and she doesn’t have any of the heart trouble often associated with Williams Syndrome. This is outstanding, especially when you consider that heart issues are generally a defining factor in the disorder. I, of course, hope that the lack of cardio involvement will translate to a less severe manifestation of the syndrome but I know the two are not related. Still, a little sunny news goes a long way these days. It’s amazing. When you suddenly find yourself in uncharted territory, the way you see and process the…

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Williams Syndrome Pity Party – Table for 1 in 20,000

Sometimes you just need to let your heart be broken for a bit, before you can starting putting it back together again. We’ve heard from genetics as I mentioned in my last post. My sweet, perfect tiny baby girl was just that. And when I was talking to the doc, just before he gave me the news, I looked over at her and thought, I need to remember this moment, because right now, you’re not a patient or a diagnosis. You don’t have a label. You’re just my perfect little baby. You have challenges and good days and bad days…

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Genetic Testing – A needle in a hay stack

When you set the ball in motion to look to genetics for answers, you learn the answers you seek are like finding a needle in a hay stack. I posted about our meeting with genetics here. We knew they had suspicions as I mentioned in the post I linked to, and I started to live as though their suspicions were true. Still I waited for the follow up with bated breath. I am one of those people who needs to know once and for all. melanie

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In her own time

When you have a preemie, the one thing you hear a lot is “in her own time.” As in “she’ll start nursing in her own time.”, or “she’ll smile in her own time”, or “she’ll make I contact in her own time”, or “she’ll have alert periods in her own time”…you see where this is going. Obi wasn’t acting like a ‘typical’ newborn. She was slow to gain weight, could latch to nurse, but couldn’t transfer enough milk to make a meal. You had to wake her up to feed her at term, 2 weeks past term, two months past…

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