Brush Your Shoulders Off

One of the more annoying aspects of being in the NICU is having nurses-often much younger than you and childless themselves-talk to you about your baby as if you're clueless about her care. Why am I on this topic today? Well, because a young nurse who I generally like has annoyed me in just that way this morning. Yet, even as I write about it, I am letting it go and seeing little point to describing the incident. It's just easy to become very sensitive-sometimes overly so-about your position as the mother when other people are taking care of your baby around the clock. And after months of being here with your baby, even if not constantly, you do get to know your baby pretty well. As your baby's condition progresses to the point where you can take care of most of her needs, you progress to the point where you don't want anybody trying to direct you. You're just not having it. 

Oh, I can't help myself. Today, I told the the nurse that I am going to ask the doctor for an order to weigh Brave Baby before and after breastfeeding in order to see how much she's getting. She replied that there's no point in weighing her because, if she's not latching on, she's not getting any milk. Well, duh. 'Cause you know what? I have done an ample amount of breastfeeding, thanks to my first child, who we nicknamed Sir Nurse-a-Lot. I have some idea how it works. Before you deliver your pithy kernels of wisdom, you should check who you're talking to. And perhaps seek a little more information. Ask, for example, whether she's latching, rather than assuming that she is not. Never assume. You know what an ass that makes of you (but not me). 

I kept it pleasant though. Always do. Nobody says the right thing 100% of the time. These nurses have a tough job to do, and they usually do it well. But there are those moments when you just have to brush your shoulders off and keep rolling.  

All Trached Out

Last night, for the first time ever, I managed to get to the NICU early, before it reopened to guests at 7:30 after the one hour it closes in the evenings for shift change. So I'm standing in the waiting area, idly re-reading the posted information about requirements and expectations for taking your baby home. It notes that babies generally cannot go home until they are no longer experiencing apnea, but that you might be able to take your baby home with an apnea monitor and oxygen. This made me laugh. If only I was taking my baby home only on oxygen and a benign little canula. We'll probably have oxygen, yes, but it's going to be feeding into a trach. Yet, when I read that about the oxygen four (yes, four) months ago, I was horrified. No way did I want to take a baby home on oxygen! How would I care for a baby on oxygen? Could I put a baby on oxygen in a sling? Could we go places? I didn't even want to know the answer. I just wanted to walk out of here with a baby as healthy as if she'd been born full-term. I wanted to walk out of here with this nightmare firmly behind me.

Instead, I got a trach. Or, rather, Brave Baby got a trach. Now she's all trached out. I don't mean to be blithe about it. Sometimes you really do have to laugh to keep from crying. You have to see the humor in the thing. It's true, though, that there is very little humor in this. When I am not numbly roving along through my days, just trying to get it all done, I am inwardly pained, saddened, angry, afraid, bitter. I'm still very frightened that we will lose Brave Baby. I'm afraid of what more she will have to endure. And still, it occurred to me yesterday that it's unhelpful to her for me to feel this way. I don't, after all, want her to feel this way about her condition, about her life. I don't want her wallowing in self-pity, feeling angry about her departures from "normalcy". I suppose every parent whose child has special needs at some point goes through some period of adaptation. Maybe more peace will come once we get her home and I become confident that we can really handle taking care of her on our own and still manage to have some semblance of the life we hoped for ourselves or, even, some other life that we can learn to embrace and be happy with.

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. 

A Passage from "The Invitation"

"We must move into darker places if we are to find the wisdom we so desperately need. We rarely go there willingly, though every life contains its own cycles of grief and celebration. To meet wisdom in these dark places we must be willing and able to hold all of what life gives us, to exclude nothing of ourselves or the world, to tell ourselves the truth. Wisdom will stretch us far beyond where we thought we could or wanted to go. She will show us what we cannot change or control, reveal what is hard to know about ourselves and the world, and tear at the illusions of what we think we know, until we are surrounded by the vastness of the mystery.

"And all the while, wisdom asks us to choose life. She does not want us to just continue, to hang on, to survive. She asks us to experience life actively, fully, evey day--to show up for all of it. (p. 40)"

AND

"When we learn to be with our pain, we retrieve the parts of ourselves we have attempted to leave behind, and we are able once again to love those parts of ourselves. We find our wholeness and leave behind the impossible ideal of perfection that keeps us from the wisdom we need to live fully and compassionately with our humanness and the world. (p. 44)"

-From "The Invitation" by Oriah Mountain Dreamer

They call the NICU experience of a micro-preemie parent an emotional rollercoaster. I can't speak for others but, for me, it's been more like a pit. Or, even more aptly, a medieval rack, the main difference being that I have survived (so far) and grown and have found things to be glad of. But I have still not totally forgiven myself for our having ended up here. Okay, I haven't forgiven myself at all. I have not let go of that "impossible ideal of perfection". Surely, that's going to cause me some trouble down the line.