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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Josie’s 20 Month Update
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. Hi there everyone! I realized that I haven’t posted a “Josie update” here in awhile. A few people have asked me how Josie is doing nowadays, so I figured it was the perfect time to fill everybody in. Josie is 20 months old! I can’t believe how quickly time is flying by. It feels like yesterday that she was learning to crawl. Now she is running around the house, “reading” books all day, playing pretend, and even helping clean up her toys. Unfortunately, due to the ongoing…
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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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Cleft Palate Repair Recovery Tips
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. Before Josie’s palate repair surgery, I was bracing myself for a few miserable, sleepless weeks of recovery. But luckily, Josie bounced back in no time. Palate repair recovery was definitely still a difficult and exhausting process, but it wasn’t as terrible as I had expected, and it was so worth it in the end. A lot of people have questions about recovery and what to expect, so I wanted to detail the steps I took to ensure that everything went as smoothly as possible. Hopefully it will…
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Cleft Palate Sippy Cup Transition: How To Ditch The Bottle Before Palate Repair
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. For a baby with a cleft palate, one of the most important steps in preparing for palate repair surgery is eliminating the bottle and transitioning to a sippy cup! Josie had to be able to drink all of her liquids from a cup (no bottle!) by the time surgery came around. This is because drinking from the bottle nipple could potentially damage the surgery site (the roof of her mouth). Since she left the NICU, Josie had been drinking her milk from the Dr. Brown’s specialty feeding…
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Josie’s 14 Month Update
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. Hello everyone! I hope you all are having a great 2020 so far. I just wanted to give a little “Josie update” on how things are going with her lately. Josie is now a solid walker and walks everywhere! She LOVES to go outside and pick up any leaf or stick she can find. Her personality is totally blossoming lately. She is such a happy, silly, fun girl. She loves to be near her mama at all times! She also loves to read books, climb on all…
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Josie’s First Birthday Party and Cleft Palate Repair Surgery
October was a BIG month for our family. We threw Josie’s first birthday party at our house at the beginning of the month, then a few days later she had palate repair surgery to close the cleft in her palate. We had been anxiously anticipating these two events for literally an entire year. It was completely exhausting, but we are so happy that we have come this far. Birthday time! The first thing we tackled was Josie’s birthday party. It was a big success in my book. Everything turned out just the way I hoped it would, and so many of our favorite people gathered together to celebrate Josie’s first…
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Today My Baby Walked For The First Time
Josie took her first steps today. I still can’t believe it. Every milestone she reaches feels like another weight lifted off my shoulders. Ever since Josie was born with Pierre Robin, a mysterious complication that we never expected, there has been an anxious voice in the back of my head. It asks cruel questions that keep me up at night. Questions like, Will she ever speak? Will she develop on time? Can she hear me? Is she reaching her milestones? Is she normal? It’s a voice that I try to silence and ignore. I know it’s irrational to be concerned about things like that. If I ask any of these…
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Controlling the Drool with a Cleft Palate Baby
Some links may be affiliate links. I may get paid if you buy something or take an action after clicking one of these. I’m in the middle of writing down my entire NICU story and it’s getting pretty heavy, so I wanted to take a break and write about something that’s been on my mind lately. Drool. Yeah, my life has pretty much been all about drool for the past 11 months. My daughter has a cleft palate so it seems like the stream of drool flowing from her mouth is never ending. I thought I’d share some ways I’ve found to deal with this issue and make the best…
