When I tell people that my daughter Josephine was born with a cleft palate, many of them respond by saying something along the lines of, “Wow, really??? You can’t even tell!” This is because, when people hear the word “cleft,” they automatically think of cleft lip. But a cleft palate is something totally different (though the two often occur together). Don’t feel bad if you’ve made the same mistake. It’s totally understandable! I don’t think many people even know what a cleft palate is. So I wanted to write this post to break it down for you! Cleft Lip A cleft lip is a gap in the upper lip. According…
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10 Ways To Support A NICU Parent
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. Having a baby in the NICU is one of the most difficult experiences a parent can go through. It’s so important to support these parents in appropriate and helpful ways. I’m sure most of you know already that my daughter Josephine was born with a rare birth defect called Pierre Robin Sequence. As a result of her condition, she had a lot of difficulty breathing and feeding for the first few weeks of her life, so she spent that time in the NICU. My husband and I…
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A Complete Timeline of Jaw Distraction: Josie’s Journey, Part 2
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. It’s time to talk about jaw distraction! My daughter Josephine was born with Pierre Robin Sequence, or PRS. (You can read my brief explanation of Pierre Robin Sequence in my blog post What Is Pierre Robin Sequence? Josie’s Journey, Part 1.) When I was first told that Josie had PRS, I had a mile-long list of questions and worries. And of course the question at the top of my list was, how do we fix it? The answer, in Josie’s case, was mandibular (jaw) distraction. What Is…
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What Is Pierre Robin Sequence? Josie’s Journey, Part 1
Hey everyone! Welcome to my blog! As I mentioned in my previous post, I’ve decided to (re)start my blog in order to share the story of my daughter, and her journey with a rare birth defect called Pierre Robin Sequence. Our Story Josephine was born with Pierre Robin Sequence, or PRS for short. We had no idea this condition even existed until the moment Josie was born. She came out blue due to lack of oxygen, and the doctors and nurses immediately realized that something was very wrong. The on-call neonatologist rushed in to my delivery room. He identified the source of the issue within minutes: Josie had a small…
