44/365

20140213-215156.jpgA portrait of my daughter every day in 2014

Every night after she’s asleep I watch her on the iPad or phone, inevitably she wakes, needs more comfort and milk and is back to dream land. There’s a box we always check on the questionnaire at the cardiologists office. It reads “restless sleeper”. In our world that translates to “sleeps well only when mama and papa are near”.

It’s still CHD Awareness Week, so I thought I would ramble a bit…

I just finished reading Walk on Water, by Michael Ruhlman and the wheels it has begun turning in my brain have not stopped. The book follows Roger Mee, a pediatric caridiothorasic surgeon at the top of his field(now retired). He operates on the most difficult cases, almost always neonates,and has amazing outcomes.

This book is intense. There’s the obvious reasons, these are the most complex cases. Some of the babies die. Reading about the infant who finally took his first breaths only once he had been removed from life support was heart wrenching. But it’s also intense in its density, trying to understand descriptions of open heart surgical repair is at times beyond my comprehension.

Despite all of that, I found this book fascinating. I couldn’t put it down. There’s something about the doctors and nurses who save kids lives that captivates me. I found myself wondering about them while we stayed in the hospital. I built them up to almost god like figures in my head. Yet they are all still human, holding a child’s life in their hands, and can fall prey to their own humanity and make a mistake.

The author repeatedly questions why all complex issues aren’t immediately sent to Mee. Why when other surgeons know he’s out there, do they operate anyway and only refer out as a last resort, after their own failed attempts. He talks about the fact that there are only a handful of surgeons of this caliber, yet babies and children everywhere are operated on by the mediocre every day. Having one of these children I can’t help but wonder. And start googling “pediatric surgical outcomes”. My brain goes into research mode when it’s time to cope, when there’s a question or an unknown.

But that’s just it. It is unknown. She may be 20 years old before she has surgery, and by then who knows what technology will bring us. Are procedures without risk in our future? We get our medical tricorder in the mail sometime next month, something I have been eagerly awaiting for over a year now. Science and medicine. Two things I never thought I would be fascinated and passionate about.

Disclaimer: this book was amazing, but if you’re a worrier it’s not for you. It was highly informative, captivating and well written. I can see how it might also be slightly terrifying for some heart moms.

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One thought on “44/365

  1. You know what I love about this photo? (Besides the obvious sleeping baby)? The dog, curled up in the dog bed, next to the table the IPad is on.

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