Nora Lynne Myers

It has been a few days (a lifetime ago, from our perspective), since you have heard much from us, and even longer since I, Jason, have been the one to do the updating for us.

I couldn’t possibly fill you in on all the minutia of critical importance associated with delivery of a child whose physical characteristics differ more or less from the norm, but I’ll try to convey those tidbits left over from the processes we have endured which have significant bearing on the welfare of ourselves, our family, our new baby, or our relating to all of you.

First off: Janelle’s physical performance during labor and her physical recovery since have been all we could have hoped for, especially for an induced labor. We have also had a more than satisfactory experience relating to all of the staff here at UVA (we can speculate about connections between those two sentences). For me, the labor and delivery were an awe-inspiring experience. To be so closely involved in such a monumental process with someone who did it so well was truly beautiful, and a memory I will always cherish, no matter what comes our way. All of the skeins of attending staff were duly impressed, commenting especially on the exquisite and powerful nature of Janelle’s pushing technique. We all have every reason to feel proud of her and grateful for the nearly complete lack of complications she has experienced.

Now for the baby: We can’t ask her how she thinks she is doing, so instead we have to ask the hordes of kind professionals studying each development in her saga. And they don’t know yet exactly. For the first 12 hours or so she was remarkably stable for her size and condition. That is to say that 3 ½ pound babies don’t usually have such an easy time keeping their temperature up, and it’s an especially good accomplishment since she washed up on the shores of this world peculiarly lacking in body fat. Having absolutely no body fat could be life-threatening, and that is not true of her so far as we know. She is expected to start accumulating it within a few days if all goes reasonably well. But right now there is very little. She’s still doing great on temperature, has had appropriate bowel movements and acceptable digestion patterns, and has shown no problems with neurological responses, heart rhythms, etc. She has even made some progress towards being able to nurse on her own. There has been only one significant alarm, and that has had to do with blood oxygen levels. Early this morning (24 hours old) the levels began to sag and continued to decline slowly despite a series of increases in intervention throughout the morning. After a chest x-ray they do not suspect infection or fluid in the lungs, and are not particularly concerned about cardiovascular problems. Eventually they began to hover around the assumption that she’s just plain tuckered out, and have adjusted her care routines to include supplemental oxygen in high volumes at adjustable concentrations (depending on blood saturation levels), and otherwise as much rest as possible. She seems to be responding well to that treatment, but it means fewer attempts at breastfeeding for now and being present to her mostly in ways other than cradling and holding. I feel good about this course of treatment despite our desire to parent her with as much attachment as possible in these early days, and feel hopeful that she will get over the hump and on her developmental track soon.

The question that is, of course, on all of our minds is, “What is her developmental track going to look like?” About this nobody yet knows, and may not until time reveals its secrets. Trying to project her developmental future seems to be a prospect about as murky as trying to assess her well-being in the womb has been. We have met with several doctors, including a geneticist early yesterday. None have uttered anything conclusive. I will, however, dedicate a paragraph to the geneticist’s helpful consultation.

He went over her thoroughly in medicalese with two transcribers taking notes. He then turned to us and translated into plain English those findings which stood a chance of mattering to us. What he said to us included the following, some of which we had already noticed or been aware of (we’ll go head to toe): She has a dramatically large fontanel, a.k.a. “soft spot”, small ears set seemingly low on her head, some underdevelopment on her fingertips on both hands (especially the last two fingers), a large but not alarming umbilical hernia, genitals of unusual appearance, and unusual formation of the toes, including a long and pronounced second toe, and underdevelopment with some webbing on the last three toes. Of course, there was also the pronounced lack of body fat all over, revealing a quite satisfactory bone and muscle structure in startling relief. Here’s what he had to say about these items: About the fontanel he couldn’t guess whether it would close on its own or require surgery or other intervention. The ear shape, size, and position didn’t wave any red flags at him. The fingertip abnormalities he felt were probably mostly cosmetic and would not, in his words, “…affect her handwriting.” The umbilical hernia was of not uncommon type, may not have any connection to the rest, and wouldn’t cause her harm and may or may not require surgery down the road. The uncommon appearance of her genitals he attributed entirely to the lack of body fat, saying he felt there was no reason to be alarmed about them or confused about her gender. The unusual toe formations were, again, not necessarily assumed to be harmful or even bothersome. In general he could give us no diagnosis and felt the series of traits did not call to mind any familiar pattern. He called them all “clues”, and we got the impression we were beginning an investigation.

The first step in the investigation will be to get results back from some blood tests that are looking for abnormalities in the shape, size, and number of her chromosomes. So far none of the doctors beyond the general neonatologist who first reviewed her case immediately after birth have any apparent inkling that we’re looking at some kind of lethal or harmful chromosomal problem, though they won’t rule that out until the bloodwork comes back, which should happen probably either tomorrow or Friday. Whether or not further investigation will tie these symptoms into any kind of genetic or other syndrome or pattern is what is so murky. The geneticist just said his job is to do his best to get us a diagnosis and try to inform us of what it means for possible impairment and inheritability. Unfortunately the best case scenario is probably that the experts keep ruling things out until there’s nothing left to rule out, and we are simply left wondering and working with the hand she has been dealt. We have a hard time telling from this perspective just what that will mean.

So for now we’re just trying to work with the neonatal intensive care unit (NICU) nurses and doctors to meet her needs. Based on our interactions and observations we are well-satisfied that she’s getting what she needs and more, and has great people looking out for her all the time. Time will only tell what nature is presenting us with.

This morning when I came back from her bedside to Janelle’s room and had some time to myself, I shed some tears, fearing that the decline in oxygenation meant she was beginning to slip away from us. That indicated to me that I am bonding with this child. Perhaps that is part of why we have felt moved to go ahead and choose a name for her. We are calling her Nora Lynne. Nora, we understand, means “light” in one or more languages, and Lynne (besides being her aunt Karen’s middle name) means, we understand, “a cascade, or the pool into which a cascade falls.” We have liked this combination of names for a while, but felt hesitant to choose such cheery imagery when the process seemed so fraught. Now that she’s here, it seems right to choose images of clarity, warmth, energy, and refreshment as statements of hope for her life. We hope the coming weeks and years hold a “cascade of light” for our family, with each moment a little brighter than the one before. But it also seems appropriate for another reason. As things have progressed in this pregnancy, and things have been so variably grim and hopeful and ambiguous, we have experienced an ever-expanding, ever-strengthening wave of support from all of you. Carrying that feeling around with us has made the rigors of this time much more manageable than they otherwise would have been. Also we have benefited in distinctly material ways, through child care for Kali, meal provision, help in getting our front room nearly completed and ready to move in to, thoughts/prayers/good energy sent our way from around the globe, people checking in, and most recently a veritable torrent of preemie clothes that will make this girl the best-dressed baby on the block! Friends and family have demonstrated their caring concern, and strangers gone out of their way to help. It has profoundly impacted us, and it only seems appropriate to include memorialization of this experience as part of the justification for choosing this name for her. Also we find the name adorable.

So, welcome to the world, little Nora Lynne. We hope you find it to your liking. It’s been a rough start, but you’ve got a lot of people pulling for you.