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preemie

Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: Some things about having a baby with a rare genentic syndrome…

…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU. We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences…

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Update: We Did Good (Random Act of Kindness)

So a week ago today I posted here about a Random Act Of Kindness. I urged readers here and on Facebook to join me in voting for a photo in the Virginia State Parks First Hikes contest so the family could win a 1-week stay in the park of their choice. I found a blog post on the Love that Max Link-UP from the blog Cheering On Charlie about the photo contest she’d entered. When I read this “At first, I wasn’t sure I wanted to enter the contest. Quite honestly, I have become afraid to hope for things.” I…

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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 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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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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