Something Wasn't Right: Missed Diagnoses & Rare Conditions

Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It

1 h 6 min · 3 de may de 2026
Portada del episodio Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It

Descripción

One day we were searching for answers… the next, we were preparing for heart surgery. In this episode, I share what it was like to hand my baby over for open heart surgery and spend the next month in the hospital navigating life in the CVICU. From the moment after surgery — seeing him covered in tubes and monitors — to the emotional highs and lows of recovery, this is the part no one can really prepare you for. This episode is about survival mode, learning to advocate in real time, and what it actually feels like to become a “hospital parent.” If you’ve ever had a child in the hospital, or are facing something similar, you are not alone in this. In this episode: • What to expect during infant heart surgery recovery • The emotional reality of having a medically complex baby • Advocating for your child in a hospital setting

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7 episodios

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One of the biggest lessons our family's journey has taught me is that hard is hard. We spend so much time comparing struggles—trying to decide whose situation is worse, whose pain is more justified, or who has it harder. But the truth is, every person is carrying something. And whatever they're carrying feels heavy to them. In this episode, I share why I've stopped ranking hardship and started focusing on grace instead. During some of the hardest seasons of our lives, most people had no idea what was happening behind the scenes. They didn't see the sleepless nights, the fear, the medical appointments, or the uncertainty surrounding our son's health. From the outside, everything may have looked normal. That's why this episode is a reminder to choose kindness whenever possible. The person who seems distant, impatient, or even rude may be fighting a battle you know nothing about. They may be carrying fear, grief, stress, or a burden that isn't visible to the world. You never truly know what someone is going through. Let's talk about compassion, perspective, and why a little extra grace can make a bigger difference than we realize.

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In this episode, I share the “God winks” — answered prayers, God’s timing, and moments that felt like God was there. This isn’t about having perfect faith. It’s about what it looks like to wrestle with fear, hold onto hope, and find meaning in the middle of something you never would have chosen. Because sometimes, even in the hardest seasons, there are moments that remind you you’re not alone. In this episode: -Finding faith during medical uncertainty-Recognizing meaningful moments in difficult seasons -How this journey changed my faith If this episode speaks to you, share it with someone who needs a reminder that they’re not alone in what they’re walking through. Follow Something Wasn’t Right for more real, honest conversations around motherhood, advocacy, and resilience.

23 de may de 202632 min
episode Episode 4 - Home, But Not Free: Medications, Fear, and the Reality After Discharge artwork

Episode 4 - Home, But Not Free: Medications, Fear, and the Reality After Discharge

Going home was supposed to feel like relief. But it didn’t. In this episode, I share what life actually looked like after leaving the hospital — managing medications, adjusting to life without monitors, and carrying the constant weight of responsibility for a medically complex baby. From the ups and downs of daily life to the unexpected fear ofcomplications — including a blood clot — this is the side of recovery people don’t always talk about. Because getting discharged isn’t the end of the story… it’s the beginning of a new one. In this episode: -Life after CVICU discharge -Managing medication for a baby at home -Recognizing patterns, complications and continued advocacy -Navigating fear and distrust -Adjusting to a "new normal" as a medical parent If you’re in this stage right now, or heading into it, this episode will help you feel less alone. Follow Something Wasn’t Right for more on navigating life with a medically complex child.

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episode Episode 3- University of Minnesota Speech artwork

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Episode 3 is a little different. I was asked to be a guest speaker at the University of Minnesota’s Speech-Language Pathology and Audiology graduation. In this episode I share that speech as well as some more about our favorite provider: our outpatient speech pathologist. When so many concerns were minimized or dismissed, she listened and truly cared about us. She advocated for our son and us even if it meant ruffling feathers. Her support not only helped our son, but helped us feel seen as parents during one of the hardest seasons of our lives. In this episode, I share why compassion and advocacy matter so much as a provider, especially in pediatrics. If you are in the medical system and looking to improve, this episode is for you.

10 de may de 202622 min
episode Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It artwork

Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It

One day we were searching for answers… the next, we were preparing for heart surgery. In this episode, I share what it was like to hand my baby over for open heart surgery and spend the next month in the hospital navigating life in the CVICU. From the moment after surgery — seeing him covered in tubes and monitors — to the emotional highs and lows of recovery, this is the part no one can really prepare you for. This episode is about survival mode, learning to advocate in real time, and what it actually feels like to become a “hospital parent.” If you’ve ever had a child in the hospital, or are facing something similar, you are not alone in this. In this episode: • What to expect during infant heart surgery recovery • The emotional reality of having a medically complex baby • Advocating for your child in a hospital setting

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