People Say the Darndest Things

Last week, someone asked me how the baby was doing. I said, "Well, she just had tracheotomy surgery, and she's recovering." And the person responded, "Is she gaining weight?" 

Well, yes, she is. As she has been ever since we began this nightmarish journey. Why even ask that question anymore? It's not the central issue. Weight is not the reason my baby is still in the hospital after four months. If it was just a matter of weight, she could have been released two months ago, around the time she reached four pounds. No, weight is not the issue. Breathing is the issue. They can't send her home if she can't, somehow, breathe. She can't live if she can't breathe. In case you didn't know that. 

Who wouldn't know that? Of course, everyone knows we need to breathe to live. Yet, people routinely act as if respiration was a marginal issue. The aforementioned exchange was far from the only occasion when, even after hearing of Brave Baby's latest respiratory struggles, someone chose to focus instead on her weight gain. I remind myself that it is only because people are so ignorant about micropreemies, not at all their fault. Most people's idea of preemies-indeed, my own idea of preemies before I had this one-are based on those 34-weekers; they think of them as just very small babies whose main task is to grow. But micropreemies are a different cut of cake altogether. They need to grow, yes, desperately so. But there is usually so much more they need to do as well. Respiration usually tops the list.

So I try not to blame people for not knowing because, really, how could they? But I do get annoyed that they don't at least take some cues from me. If I am talking of breathing and ventilators and oxygen levels every time the subject of my baby comes up, might you not start to get the message that this is her most pressing issue? If this is what's preoccupying me, might you not think it's for good reason? To the contrary, it seems, people act as if I'm just focusing on the wrong things. They pooh-pooh the concerns that I voice. They have the nerve-the nerve-to imply that I'm simply not appreciative enough of how well my baby is doing because, after all, she is gaining weight. I should be dancing in the aisles. 

We are all programmed to believe a fat baby is a healthy baby; however, I have seen chubby babies with jelly rolls on their legs in the NICU who were inert and unresponding. I have seen babies putting on weight and dying at the same time. When you witness this, weight gain alone is not comforting. You know that there are threats on many fronts, not just that one. But that is the thing about really understanding the NICU experience. You gotta be there. It's impossible to imagine.