heart condition

  • Grip Strength

    The days here at the hospital seem to follow a pretty consistent up and down roller coaster pattern, and today has been one of those days. It started out great, with an update from Layla’s nurse that she had made good progress eating from the bottle overnight with minimal puking. Poor girl is trying to learn to…

  • Hurry Up and Wait

    Layla is 13 days old and I’m writing this as we sit in her room at the Children’s Mercy PICU. There are what looks like a thousand wires and tubes connecting machines to each other and to her. Her heart and lungs are currently being supported by ECMO (Extracorporeal Membrane Oxygenation), which she’s been relying…

  • Calm Before the Storm

    May your choices reflect your hopes, not your fears. –Nelson Mandela My countdown app says “4” days till Layla. And unless she makes an early appearance on her own, we are on the books at Children’s Mercy to get labor started this Monday morning, November 2nd. I spent my last day of work in the…

  • What a Difference 2 Years Makes

    It’s hard to believe two years ago today, we spent that fearful day at the hospital and found out about Skyler’s heart condition. It seems so much longer ago, especially when I watch her run around crazy every evening like a chicken on speed. There are times I pick her up and hold her during…

  • The Most Wonderful Sound in the World

    Ayayayayay the sound of my own baby laughing just makes my chest want to burst! And the best are the times when it’s so unexpected, like I’m not even trying to be funny, but whatever it is catches her at just the right time. Like tonight, she was playing with her stuffed animals and wrestling…

  • Meeting milestones?

    Lately I’ve been kind of down about Skyler’s development. I know she has an acceptable excuse, but it’s still kind of frustrating when I see other babies younger than her that can do so much more physically than her. I’ve seen a few lately, and they seem so much older than Skyler in the way…