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. touko 2026
jakson Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It kansikuva

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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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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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