2007 coming to a close!

We are home safely from another relatively uneventful doctor’s appointment and wanted to share the latest with you. The most important news is that she continues to prove that she can indeed gain weight. She is now 5lb 10oz (a 7oz gain since her last appointment which was just over a week and a half ago). The doctor is happy that she is pretty much acting like he would expect a normal 2 month old to act, even if she doesn’t look like one. We have been encouraged by that too! Since the last appointment, she has started doing two things that help on a number of fronts: smiling and cooing. It is encouraging for us because it feels like it points to her ability to learn to do new things and is developmentally appropriate for this stage in her life. It also is quite endearing! While Jason hasn’t struggled much with bonding to this new little one, it continues to be a process for me. Many of the things that just came naturally for me with Kali – to talk to her, sing to her, read books, play, etc… have been something I’ve had to remind myself to do this time around. Having her begin to interact with me in new ways seems to draw some of those ways of relating out of me.

In terms of future appointments, her pediatrician is ready to put her on a “normal” schedule for appointments – basically not seeing her more regularly than he would see any other baby. The main thing that will make her have additional appointments in the next 3 months is for the monthly Synagis shot to protect her from contracting RSV. We are also requesting that we space out immunizations here at the beginning (at least) until her body is bigger, we are out of winter and we see how she tolerates them. We are grateful he is willing to work with us on this.

Our next appointment in Harrisonburg will not be until January 15^th. In the meantime we will head back to UVA for the first time for 2 appointments on January 8^th. While I don’t look forward to the trip, we are eager to take this opportunity to reconnect with Bill and Dottie, our Charlottesville family! We plan to head over the mountain on Monday whenever we can get ourselves together and it seems that Nora is tanked up enough on milk to make the trip. We’ll spend the evening and night with them and then have a full day on Tuesday – meeting with neurosurgery for a follow-up on her skull bone and then an appointment with the geneticist for the results for the micro-array analysis (DNA testing). We are hopeful that after that, we may not need to return to UVA until an April follow up appointment with neonatology.

So Nora is making strides and for that we are very grateful. And I think each of us are making some strides too on the home front. There are still days when it all feels like too much and the unknowns of the future feel overwhelming. But there are also days where it feels like there is some light ahead – when the diapers get washed, the dishes get done, Kali and I actually bake something together, Nora smiles or sleeps for a 3 hour block at night, Kali holds Nora and is a sweet, gentle big sister and I get of taste of something close to “normal.”

This holiday season has been one of shifting expectations and making new memories. When I focus on what I dreamed of months ago when I thought ahead to Christmas with a new baby it can feel hugely disappointing. But if I can take it for what is has been, we have been overwhelmed with gifts – tangible and intangible. Never have I come to the end of a year with a keener sense of being surrounded and supported by a huge web of people. That web has extended far beyond what we could have imagined initially when we embarked on our journey with Nora and it seems to be ever widening.

One of the things Jason and I both feel like we need most right now, is a chance for us to process together some of the changes our family is experiencing. And some time to read up on parenting an energetic, intelligent, intense, imaginative, creative, full-of-ideas 4-year-old! It seems that Nora’s arrival and the complexity of this time has collided with a new stage in Kali’s development that has been challenging for all of us to find our way through. It feels like it was just bad timing for her to go from having us all to herself to having to share us almost all of the time. It is also bad timing for both of her parents to be completely exhausted and a bit low on creativity. She has so many wonderful ideas, an imagination that I can only begin to get a taste of, and her energy never seems to run dry! At the same time, she seems keen on grasping control over as much of her life as possible and of making decisions about everything in her day, big and small. Like many things, we’ll probably get a handle on it just about the time she moves on to the next phase but in the meantime it has been stretching. I often feel like she is getting the worst of all of this and the one having the most taken from her.

As we look to the New Year, Jason and I are hoping to find some new rhythms that feel sustainable for us and that include things we each need to stay healthy. Jason and Kali will begin volunteering again once a week at Shenandoah Valley Community School. I will begin working on a regular schedule (2 days a week in the office in January and some at home on the off days). While it may be a bit optimistic, we hope to have a schedule that enables us both to have quality time with just Kali, time for us to get back into some kind of exercise routine (be that running or chopping firewood), finish up the front room and at some point in the not too distant future Jason and I sure would love time for more than a 30 second conversation with each other! We don’t intend to make all these strides in the first days of the New Year. We plan to mostly continue taking it a day at a time, but feel we will all benefit if our days can feel a bit more planned or predictable. We’ll see where things stand when it is time for the next update.

Well, I’m finding myself rewriting a lot of sentences, starting a paragraph and then erasing it and my eyes are getting heavy! Sleep has not been abundant! It’s about time for dinner and I think I’ll relieve Jason of the little bundle in his arms so he can edit this and we can get it out to all of you. I’m attaching a picture of our girls. Love, Janelle

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

Christmas is coming, we are tired...

As the sun set out of sight this evening behind the hill into which our home is tucked, I took the brief walk down to my chicken coops to close the birds in for the night. It doesn’t take long to do, but for the last two nights it has either slipped my mind or been edited out of the evening in favor of child care. As I walked past the garden (which still badly needs its fall clean-up) a small herd of white-tailed deer startled and bounded away, their white flag tails just visible through the dim evening. I noticed them and then went back to thinking about my family.

I am concerned that we not give the impression that the logistics of what we are currently experiencing are far beyond what a family that just received its second child would normally have to deal with. We have no intention of milking our situation to unfair advantage in terms of community support (I am aware that this probably doesn’t need saying, but it is a nagging worry of mine). That having been said it has felt, for other reasons, like a pretty heavy load and we have been most grateful for all of the great help we have been given—most of it logistical or practical in nature.

We are still needing to feed Nora as often as she’ll eat…no less frequently than every three hours and however much more frequently she wakes up and demands it. This is because she came into this world with no fat reserves, so if she runs out of calories in her digestive tract she could be in trouble pretty quickly. Fortunately she IS gaining weight (another 4 ounces this week to a total of 4lb 15oz), and seems to be indicating to us by her feeding and activity patterns that she is ready for one longer block of sleep each night. Her pediatrician has agreed to the experiment, for which we are grateful, because she had been pursuing a feeding pattern typical for a baby her age (though not her weight), which is to be awake in the evening and tank up on milk, and then be zonked out for the first five hours or so of the night. It’s satisfying and heartening to see her gobbling milk in the evenings, but has been pretty frustrating when we blow an hour of our own sleep just to cajole our baby into swallowing a third of an ounce of breast milk. Cross your fingers for us…we hope to try it tonight. Boy, could we use a 3 ½ hour block of uninterrupted sleep.

When we’re so caught up in maximizing her hour-by-hour milk consumption and day-by-day growth, it’s not often we spend much thought energy on Nora Lynne’s future. And honestly we don’t really have any more helpful information about that than we’ve ever had before. Her pediatrician told us today to be prepared for the whole range of possibilities, from radiantly normal outcome to extremely impaired. He has just gotten a copy of the discharge summary from UVA, which indicated to him just what we thought it would: lots of findings with no conclusions (I think those are the appropriate terms). In other words, nobody will risk a guess about her future or diagnosis, because it would be as much a stab in the dark for the experts as for us amateurs.

Leaving us where?

Hopeful each time she makes an advance in weight gain or any new or intensified ability or behavior.

Anxious each time the light catches her the wrong way and she seems so different from other babies, or when a feeding doesn’t go well.

If you average it out, we’re doing o.k., so that’s how we’ll usually respond when people ask. But each nuance in our opinion of what her future will be or how she’s fairing now implies a wide swing in our sense of equilibrium.

Also, we’re dealing somewhat with the after-effects of six weeks of bed rest followed by a month at the hospital, so if you add those factors to the normal logistics of adding a second child to the family, you can see why we still feel fragile and don’t know when we will begin to feel ourselves resilient again, which is why we still appreciate the support that our friends, family, and church community have shown for us.

Well, I’d better go join Janelle and Kali for some soup and corn pone before Nora wakes up and needs attention again. Love, Jason

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I just read over this letter written by Jason while I hear Kali in the background trying to convince her Daddy that her supper stomach is full but not her dessert stomach. Oh and now Nora is crying…

Some time later I’m back and have a limited window of time so this won’t be the time for much in depth reflecting. Nora is with Jason and Kali in the front room for a few minutes to give me the time to send this out to all of you. She may or may not be happy with this plan. She seems to be starting to have a bit of a fussier/gassier time in the evenings where she can’t quite decide what she wants to do next.

Back to the idea of in depth reflecting – I think both Jason and I only get a chance to do that in small snippets throughout the day. However, we were so grateful to be afforded the chance to take a walk together on Saturday when my folks came to visit and my Dad took Kali on a little adventure to a nearby lake while Mom stayed in our home to be available should Nora wake (which she didn’t). It was the first time in a very long time that Jason and I were able to take a walk here at home and while I relished it, I also realize how very much I miss those times.

Saturday we also did some Christmas decorating in our home with Mom and Dad’s help and some of their decorations (since we have yet to amass many of our own). We now have a swag (greens and a red bow) hanging above our front door, a Christmas tree with an eclectic collection of ornaments, our stockings from my Mom since we won’t be able to join my family for that tradition, and various other things. It will be a different Christmas to not travel to Pennsylvania to be with family, but it was also special to decorate our own home for the first time. We hope we can make this holiday season special for Kali in particular.

Well, Nora is not sounding very patient so I better send this and go see if she is wanting to tank up on milk for the night. Thanks to all of you for remembering us in this continued journey. Janelle

Life at home in Keezletown

We have not disappeared! I realize it has been over a week since we last updated many of you, and that you may be curious about what has transpired since we left UVA last Sunday, November 25^th. What I can assure you of is that it is unlikely, for the foreseeable future, that we will be inundating you with emails – we are just too busy to do much writing these days. Right now Jason is feeding Nora (after an only semi-successful breastfeeding try) and Kali is trying to “sell me eggs” and is making concentrating on this update rather difficult.

It is important to note that Kali and I are out in our front room (the room that has been under construction for a very long time), which we just moved furniture into yesterday with the help our friends, Risha and Mike. From the futon I can look out the picture window and see the mountain in front of me. We’ve always known we live in a beautiful place, but it is nice to finally be able to appreciate that from the indoors. I told Jason last night that it felt pretty unreal that we were actually going to start using the room that has seemed like a distant dream for some time. The room isn’t quite done but it is very livable and Kali has been thoroughly enjoying it in the past 24 hours.

Now for what many of you are curious about: how is Nora doing?? The week has been full of lots of ups and downs for Jason, Kali and I, but Nora has seemed more or less not bothered by it. She has been doing what all babies are supposed to do: eating, sleeping and filling her diaper. The eating part has been the biggest anxiety-producing task at hand. For Jason the anxiety is figuring out which bottle nipple works best for her and is most conducive to me also working at breastfeeding with her. For me it’s trying not to get frustrated with her frequent lack of enthusiasm and it’s also the need to continue doing a fair amount of pumping until both her appetite and stamina for breastfeeding increase.

BUT she must be getting enough milk!! Last week at her first pediatrician appointment she weighed 4lb 4oz. Today Jason guessed she would be about 4lb 6oz and I said that I would be happy with 4lb 7oz (which would be about ½ oz a day gain). She surpassed our expectations by weighing 4lb 10oz (a 6oz gain). She also measured 19inches, either showing growth or that she is just getting more comfortable stretching out from the fetal position. Her pediatrician, Dr. Ashton, was very pleased with her progress and encouraged us to keep doing what we are doing. Really the only reason we have to go in weekly to the Dr. at this point is to continue checking her weight and making sure she is gaining at a reasonable rate. If she continues at this rate, she could make the 5lb mark by next week, but we won’t get our hopes up too much. There was really nothing else new to report from the appointment, except that we were happy that he agreed with us that the vitamin with iron that UVA recommended we give to her is probably more of pain than it is worth and affirmed us discontinuing it at this point!! Nora will be pleased!

Kali has been so sweet with Nora, often singing her the ABC’s and holding her at every chance she can get. She also enjoyed helping give her a bath yesterday. Jason and I have found it to be a huge challenge to balance all the needs in our house right now – especially Kali and Nora’s. Kali has struggled with this transition more than I had expected, after she seemed to do so well throughout my time on bed rest and during our time at UVA. She continues to talk about how good it is to be home, how much she loves baby Nora, and how she is doing fine BUT she has had many more “meltdowns” and they are normally about things like what cup to drink out of, what she wanted to wear for the day, or anything else little that just doesn’t go quite as she would like it to. I think they are decreasing in frequency and we are trying to be patient knowing that this is a huge change for her and probably not at all what she expected having a little sister would be like. It’s not really what Jason and I were expecting either and I think all three of us are a bit more weepy, sensitive and prone to “meltdowns.”

The biggest thing affecting Jason and I’s ability to cope with all of this is our lack of good sleep. Jason is actually probably lower on sleep than I at this point since he normally is called in some for every feeding, whether it be solely using the bottle or finishing the feeding with a bottle after she has fed some from me. We may need to move to me learning the bottle to give him a break, even though we were hoping to not confuse things more than necessary for Nora. Also, it is more than a little bit clear that we have a Daddy’s girl on our hands – I seldom get her to sleep but she often cuddles up with Jason and sacks out. He mentioned to my mom the other day that he feels more bonded to Nora at this stage than he did with Kali, and that is likely because of the many, many hours he has spent holding and feeding her early on. That may be also why my feelings are the opposite.

We enjoyed having my mom with us for most of the week. It was hard to see her leave Saturday. I was uncertain how the two of us were going to handle the upkeep of our home and the care of both little ones, particularly when it seemed we had kept 3 adults relatively occupied most of the time. I still wonder how that will go over the long haul, but for today we are doing okay. And maybe that is all that matters for now. I recognize that there will continue to be ups and downs on this journey, I just hope that the ups will get a little higher and the down times not quite so intense.

In the coming weeks we will mostly stay here at home, trying to establish some kind of routine that works for all 4 of us. I will need to start transitioning back to work and that will add another level of complexity to our lives. We will not be traveling at all over the holidays, as we have been advised to keep things for Nora as “calm, cool and collected” as possible and to keep away from large gatherings and crowds to try to keep all of us healthy and Nora in particular. It will be a different holiday season for us for sure, but one we are unlikely to forget.

Well, I have a little girl sitting next to me who is impatiently waiting to choose what pictures to include with this update. She has managed to break up my concentration significantly enough during this update that I can only hope it makes at least some sense.

We will continue to try to keep you posted, but I wouldn’t count on much more than a weekly update after her appointments. We do not have to return to UVA now until January when we have follow-ups with neurology, neurosurgery and the geneticist who will by that time have results from the DNA testing. We aren’t finding a lot of time to obsess over what those appointments could reveal for us as we are pretty well occupied with baby and child care most of our waking hours – and sometimes even in our semi-wakeful states.

Enough for now, Janelle