How is he?

screen-shot-2017-01-05-at-1-50-42-pmI never realized how subjective that question really is. Recently I took care of a sweet boy with trisomy 13.  Mom called again and again, looking for updates that would give her some indication of what she can hope for.  He’s already made it past a month of life, defying the very few odds available as guidance. “He’s still on the ventilator, same settings.” “No changes.” I scroll through possible answers in my head: We might try to get him off the vent this week. We might change from continuous to bolus feeds.  He’s uncomfortable. He doesn’t like being suctioned.  He looks like he’s trying to cry, but can’t while intubated.  We added a new vitamin to his list of medicines. His bloodwork this morning showed no changes. We saw movements today that may or may not be seizures.  We’ll keep an eye out for that. When he looks at me he breaks my heart. Those things came to mind, but never made it to my voice.  Instead, I told her that he’s still tolerating his feeds and he’s at about 25% oxygen.

“But really, how is he?” Then the answer comes to me. She isn’t a medical professional looking for a crisp, bullet-point SBAR report – she’s a mom needing to hear about her son, from a mom’s perspective. So what do I tell her?  I stroked his head the way you said he likes, and you were right, mom, it helped calm him.  I love the way his hair curls above his ears.  He batted at me when I was replacing the feeding tube – his arms are so strong! He seems to like it when I rub his feet, and he totally relaxed when the physical therapist massaged him.

It’s okay if updates aren’t clinical. These are babies separated from their families.  Your little one winced at the taste of vitamins.  She was so awake and alert when I changed her diaper. She loves the soft swaddle blanket you brought for her.  We put a mirror in his crib and he loves that little baby he sees in the mirror!  Moms and dads want reassurance that their babies are known, cared about, nurtured. And the little observations, the little connections we make, are often the best update we can give a parent.

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