First power outage at home...

Things continue apace with Nora Lynne. That is to say, she gained another 5 oz. this week, continues to eat and sleep in regular, expected patterns, even steadily increasing the volume of her feeds. Her skull seems to be mineralizing incrementally as well. She remains free of any noticeable infection and makes steady improvement in her body fat content as well as motor coordination, communication, alertness, and other developmental markers. We feel it would be unwise to hold Nora to exactly the same developmental schedule as the average, since she’s got lots of fish to fry at once. But we and the pediatrician are encouraged to see that so far she is more or less making the expected neurological progress for a baby her age, as far as behavioral indicators are concerned.

I think this is the nature of what we can expect for the next little while. Her weight gain is not spectacular for a child of her age, but for a child of her weight it’s probably very appropriate. Things seem steady and uneventful. It is the story of a shallowing (as opposed to deepening) crisis, or so we hope. Dr. Ashton feels that her track record so far justifies us not needing to rush in next Monday, which is Christmas Eve, but rather waiting until Friday. Hopefully this will be a trend! She did receive her first immunization today, to prevent RSV, which she will need monthly. This vaccine is so expensive that insurance companies usually deny access to it for everybody but the most vulnerable premature babies, but Nora qualifies because of her drastic lack of body mass reserves. Seeing them stick a needle in that tiny thigh (they had to pinch it pretty good to accumulate enough muscle in one place to receive the 3.5 cc injection) and hearing her offended, pain-wracked wail was hard on her dad and mom, but it was nothing a little milk snack couldn’t help with and it sure beats her ending back at UVA on a ventilator, which would be a likely scenario should she contract RSV.

It’s interesting to have these doctor appointments as a way of us gauging the progress that Nora has made since the last one. We noticed this week that we didn’t feel any need to bring along a bottle of breast milk “just in case.” We feel confident after this week that when she needs food or comfort she will be able to latch on and nurse the natural way at any time. We and the doctor also noticed that she is easier to hold, since she has learned to steady her ponderous head on top of her skinny neck pretty well, actually. I was surprised to notice, when her clothes came off today, that you can’t really see her ribs anymore! Her hands are still shockingly wrinkly compared to the average, and her little arms and legs still seem so thin and frail…but just the weensiest bit less so every day.

What this means for family life and our well-being is not always clear, but the general trend seems to be that slowly, slowly, just the weensiest bit more so every day, a sense of normalcy and resilience is creeping back in. Don’t get me wrong, we still feel pretty fragile. In fact, I have a story about that:

The ice storm that hit our area recently may not be news to many, but it really got our attention in perhaps a different way from most. The rain had started the evening before and it rained hard for several hours while we slept. It was during a feeding around 2 or 3 a.m. (we think) that the electricity began to show signs that we were headed for darkness. When the lights were on, Janelle and I looked at each other with horrified expressions. Had we done one single thing to prepare for the likelihood of a power outage from the ice storm we had had ample warning about? Of course not. We are still often living minute to minute, just doing what needs to be done at the moment and accepting help from many hands to get it done. We are not in the mode of careful planning for contingencies. Too soon the uncertainty ended as we fumbled around for flashlights and candles. We realized that the space heater we’d been keeping in our room to make sure Nora was warm enough wouldn’t be working. We realized that Janelle’s breast pump would need to operate on battery power, and we had no idea what kind of batteries we even needed for the thing. Also, when Janelle and I looked at the sky during the outage, we saw an eerie, pulsing glow reflecting off the clouds, and memories of the trailer fire next door nearly two years ago came rushing back. A call to 911 by cell phone confirmed that it was a house fire on the next road over from us. We were both left trembling and sobered to realize not only that emergent crises can crop up at any time (our hearts went out for the unknown suffering of the unknown family), but that we would be ill prepared should that circumstance strike our household. We could get out easily, but then what? And during the middle of an ice storm? With a baby that had not yet hit the five pound mark? Heaven help us.

To make a story that felt very long short, things turned out fine (thank goodness for wood heat), and we got power back soon after noon the following day. We were so glad to see the light of morning. It was also reinforced for us that there is more than one way to approach this time. If we look at the long term big picture, or the whole situation at once, it is easy for perfectionists like us (especially Janelle) and problem solvers like us (especially me) to become kind of daunted and overwhelmed. But if we can manage to at once live attentively in each moment and yet hold each moment loosely, things feel differently. For example, that was a worrisome night, and I didn’t sleep at all after power went out. We could even now be berating ourselves for not having been prepared better. But in the moment all we could do was make the best plan we could think of for the worst case scenario, and then get out the matches and candles (It was an odd coincidence that Janelle and Kali had, just that evening, begun reading the Little House series by Laura Ingalls Wilder). And I will treasure the memory of watching my wife suckle our tiny daughter by candlelight. We felt vulnerable, but we felt like a family. A meaningful thought for Janelle and I has been that life is a continuum, but made up, fundamentally, of a series of snapshots. Some of our snapshots recently have been grim. But, you know, there have been some really beautiful ones, too.

I shouldn’t say we had done nothing to prepare for the ice storm. Saturday morning some friends from church came and helped us cut up a few down trees for firewood. We made quick work of it, and ended up with a very respectable stack. Many thanks to Earl, Laurie, and Sam. What a comfort to know that we’ve got what we need to keep warm.

I could write a lot more, but I’ve got to stop somewhere and it’s getting late. Thanks for caring about our family. We’ll keep you posted. Love, Jason for the Myers-Benners