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

Going home tomorrow!!!

I (Jason) am writing this update letter today in the hopes that we will not have enough time tomorrow to write anything to anybody. That’s sort of a back-door way of saying that, if all goes as we expect it to, they plan on DISCHARGING NORA TOMORROW!

For those of you who have not been on our daily/frequent update list, I’ll run down the events of the past week very briefly:

Nora has done very well this week. She was weaned out of her isolette (incubator) with no problems, and except for the stressful effects of a neuroopthalmic exam (basically normal result), has been a pretty boring patient. This is a good thing. The morning after the eye exam day we wanted to have the nurse re-position the feeding tube, but she proposed pulling it out and having us put in a new one so we would know how to, since they planned on sending us home with one. We agreed, but Janelle requested to be allowed to breastfeed her, just this once, without the tube before it went back in. The nurse liked that idea, and so did Nora, we soon found out, because she did a good long feeding. We were impressed. Janelle asked the doctors if we could try breastfeeding on demand that day just to see what would happen. They liked the idea, and, to everyone’s delight, so did Nora! That night they wanted to let her rest, so she got the tube back in overnight, but we were permitted to try it for 24 hours starting the following morning. That 24 hours has now stretched into 72 and counting, and because she didn’t lose much weight in the transition and because by last evening she was up to her maximum weight again and presumably climbing, no one has looked back. To facilitate this trial, we have been permitted to stay in one of the rooms in the NICU usually reserved for parents of babies who are going home in one or two days (it looks like we’ll have been allowed here four days by the time this is over), which has made a huge difference in our ability to parent Nora as we would hope to: lots of cuddle time, attentiveness around the clock, and a less distracting and nerve-jangling environment. The doctors want one more evening weigh-in to reassure them before letting her out of their sight, but everyone is assuming we will drive her home to Keezletown tomorrow before noon! They would have sent us home tomorrow anyway, probably, because she’s been doing perfectly with her temperatures, heart rate, breathing, and blood oxygen saturations. The difference is that we will not have to mess with feeding her through a nasogastric tube…a huge relief!

Nora is now up to 1855 grams, which is a little over 4 lbs. 1 oz. She is getting better all the time at breast and bottle feeding, having fully discovered her appetite! To ensure her maintaining her glycogen (metabolic energy source) reserves, we need to be sure to feed her at least every three hours, unless she voluntarily wakes up earlier than that, in which case bump the schedule forward accordingly. She still seems to need a lot of sleep (like any newborn, I suppose), so frequently we need to wake her to feed. Janelle is trying, in fact, to feed a sleepy baby as I write. Often I find her behavior laughable at those times (except when I can hardly get my eyes open), because even though it was our idea to wake her for meal time, she usually seems to feel as if the waiters at this restaurant have absolutely no respect for a girl’s appetite and usually is complaining loudly and demanding to see the manager by the time we get her temperature taken and diaper changed! Seeing her relishing the milk from bottle and breast reaffirms something I have long felt: food tastes better when you work for it!

The long and the short of it is this: we can see evidence that there is something about Nora’s genetic makeup that causes her body to differ from the average. The UVA folks are doing their best to figure out what category that might fall into, but have no guarantees for us. However, as the geneticist said to us on Wednesday, it looks like time is on our side, because whatever it is, it is so far not keeping her from thriving in her own way, at least for now. She is stable, happy, and growing. There are even a growing number of moments throughout these days where I find myself really enjoying having a new baby and delighting in her little features and expressions (especially that drugged look babies get when they have a belly full of milk). Of course we’re exhausted from frequent feedings, but when I take a step back from the efforts of the moment, there is a sense of relief and gratefulness building, because we should be exhausted: we are the parents of a newborn. The gift of these past few days is that we’re finally able to start feeling like it. Jason

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Jason is taking his turn at attempting to feed Nora “hind milk” (the creamier more nutrient dense milk that a mother produces after a baby has been sucking for awhile) from a bottle but I’m not sure he is being much more successful than I was. When she wants to eat she REALLY wants to eat and when we are trying to put her on a schedule and feed her according to that, she sometimes REALLY wants to sleep and no prodding, tickling, coaxing, manually opening her mouth will make her start sucking. I’m so eager for the day when her growth and weight are adequate enough to allow us to just follow her cues and not force eating at times when she is uninterested. And, of course, since so much weighs on her continuing to put on additional grams, it is hard for me to not feel pretty uptight when she is unenthusiastic. It has been such a relief and so wonderful to be with her and to interact with her without that feeding tube – we all are so much happier and that is one reason we are working so hard to keep it out for good.

Tomorrow will no doubt feel like a day we have waited for for a long time. It will be just under 4 weeks since we left home to come to UVA for the induction. While we are so eager to start establishing our routines and rhythms together at home, there are also some feelings of anxiety as we anticipate this big change. It has been wonderful to be with her around the clock here and away from the monitors that were our cues of her health before. Now we look at her color and watch her chest rise and fall to check breathing.

The other big thing for Jason and I regarding tomorrow is being reunited with Kali who has been with my parents this week. She has been battling a nasty cough and fever for most of the week. She seems to be on the mend now and her sickness didn’t keep her from having a wonderful week with Grandma and Grandpa. It has been a challenge to get off the phone with her the last number of times as she seems very eager to talk and talk with Mommy and Daddy. She has been such an amazing little girl throughout this time, but clearly is missing us and her home and normal routine. I’m not sure what normal will be for us in the future, but I’m pretty eager to get tanked up again on Kali hugs and kisses!

Well, Nora is sleeping so we better attempt to at least rest. We continue to feel so grateful for the showers of support and love we have felt over the last number of weeks. While the journey has felt difficult and the days long, we are not sure what we would have done without many of you: the emails, the phone calls, the visits, the food deliveries, the prayers, the hand-me-down clothes. And while many of you don’t know them, we will feel forever indebted to Bill and Dottie Scott who opened their home to us the past 4 weeks. They not only provided a bedroom/bathroom for us, but they fed us, let us do laundry at their home, taught us a new game, listened to us, helped with our transportation needs, and befriended Kali and provided a wonderful place for her to play. While I’m not eager to stay in Charlottesville, I will admit feeling a little sappy as I left their home after picking up the last of our things today.

There is no doubt the journey of parenting Nora is just beginning for us. There will be follow up appointments here at UVA. There will be decisions to make. There will be healing and processing to do as we continue to adapt our dreams for ourselves and for Nora as we get to know her better.

In the interest of not overloading all of you with information/emails, this will be the last update of this kind that we write and send to this large of a list. We will no doubt occasionally write some of our thoughts down in the coming weeks/months and are happy to continue sharing those with any of you that are interested in receiving them. Please let us know if you want to continue receiving updates from us (and are not already on our “frequent update list.”)

Sincerely, Janelle

Our 4lb baby all to ourselves!!

What an odd feeling! We have our baby all to ourselves! Nora was just wheeled from her little cubicle in Pod D of the NICU to the “rooming in” suite where Jason and I will be staying with her tonight – and potentially the next several nights until discharge. She has a nurse assigned to her but she won’t bother us or her much except to come evaluate her briefly and of course if her monitor alarms go off. She is still hooked up to monitors BUT we were able to get them to turn off the monitor screen in our room so that we cannot see what is going on. It will be good practice for going home when we will (as with Kali four years ago) have to check that she is breathing by looking at HER rather than a screen!

The last two days I’ve sent short emails to our family and I’m copying them at the end of this for those of you that want a little background on the last few days and what has transpired to bring us to the point of having Nora in a room with us for an overnight stay. So far today is going well – she has had two good breastfeeding sessions out of two tries and will hopefully soon be getting hungry for a third. The feeding tube had to be put in briefly overnight when she wasn’t able to take her whole feeding with the bottle. However, they removed it first thing this morning and all of us are much happier when it is out. She rests better and I rest better.

The plan is, as of now, that we will be discharged most likely on Sunday of this weekend if all goes well in the next few days. She does need to prove with outputs in her diapers and by gaining weight that she is getting enough from me. We have to go with those clues now since we can’t watch how many cc’s of milk are going in through the tube. She was down about 10 grams last evening to 1845 grams but the nurse on was actually very happy with that and thought that she was actually doing great for her very first day of trying to work for all her food. And work she did – work we all did. I feel really tired but less anxious. Overwhelmed by the task ahead but much more ready to work hard at breastfeeding with her than with tube feedings. And she seems to do a little better and get a little stronger each day.

We had a long consultation again today with Dr. Braddock, the geneticist. We cannot complain at all about the amount of time he is giving to us and his patience with answering any questions we have. He continues to feel that the DNA bloodwork he recommended to us would be helpful in trying to determine what is causing the variety of things going on with Nora. We just gave them the go ahead to do that today and Nora just survived having about 5 cc’s of blood drawn and is sacked out again. He would also like to continue to follow up with us in the future, even if a clear diagnosis at this stage of her life is not reached.

He was clear that the only thing that we might end up with at the end of this is to say that “Nora is Nora.” He is also not recommending we do every new test that comes down the pike. He hopes to help us figure out what is going on solely so that we can parent Nora in the best way possible and know how to care for special needs she may have and also to give a sense as to whether it is likely to happen in future pregnancies for our daughters down the road.

It seems that in the coming days, weeks and months, Jason and I will be faced with a lot of questions about how far to go down the road of testing and attempting to put the “Nora puzzle” together. At this point in our journey, I feel the need to focus as much of my attention and energy as possible on learning how to mother her. For right now that means working on feeding, holding, burping, cuddling, loving, and getting to know some of her cues. That might mean something really different down the road.

Speaking of mothering, it is getting to be time for a temperature check, diaper change and another session of feeding (that is after Jason gets done photographing her!!).

Until next time, Janelle

Monday, November 19

Hi Family, I thought I would send just our family a quick update today.

First the good news - as of this morning Nora is OVER 4 lbs. She is now 1840 grams which is just about 4 lb 1 oz. It felt like a milestone for sure. For some reason, today has been a more emotional day again for me - maybe not having my 4 year old diversion around to help me (Kali is with my parents for the week and having a wonderful time. Of course she about made me melt last night when she told me over the phone, "I wish I could give you a hug."). Today has just had some ups and downs:

She has a new nurse once again which always takes me some time to get used to. We left at the 12pm feeding because she was really sleepy and I needed to get out of the hospital so Jason and I went for a walk. When we came back I laid down and Jason went in to her. He came out to let me know that they had done the eye exam while we were gone (which apparently is not pleasant) and she was pretty wiped out. They also noticed a bit of blood in her tube which concerned them. So she had an x-ray which was fine but they are guessing that the feeding tube which needs to be changed was probably irritating some spot in her belly. She is still refluxing some too but not nearly as much. Anyway, her breathing and her blood oxygenation is really altered this afternoon but when we just talked with two nurses they said that the eye exam totally wipes babies out for the rest of the day. By the way, the eye exam was normal... I hate that she has to go through all of this - and that we are not there with her (not that I would be much help at all!).

So it's obviously not a productive bottle/breastfeeding day. She is sacked out in Jason's arms right now. I will go back in before too long to learn to put the tube in. They are going to put an even skinnier one in which is supposedly easier. We'll see. I hope that she is more alert tomorrow and we can pick back up on feeding. She did breastfeed some at the 9am this morning. Love you all! Janelle

Tuesday, November 20th

Good morning family, Jason is about to hand me a little one to see if she wants to nurse again. He just changed a third poopie diaper of the morning - feeling a bit like Kali days. It seems like today is off to a different start from yesterday. We both will likely be with Nora all day as we are attempting nursing on demand. That's right - the feeding tube is currently out. It will likely go in again later today, but for now we are enjoying seeing her little face free of tape and tube.

She was at 1855 grams this morning (up 15 grams from yesterday to about 4lb 1.5oz). We were happy with this as yesterday was a tough one. She did not spit up overnight and when possible they used just the hind milk (fuller in fat) that I had pumped before leaving.

This morning before rounds we had the nurse take the feeding tube out since we were concerned it was in too deep. She then agreed to leave it out while I breastfed. They came around on rounds when I was burping her. We mentioned wishing we could just leave it out and try nursing on demand for the day - they agreed! So we are trying it. She has nursed really well several times and it now actually protesting a little with daddy as I think she would be interested in continuing but the nurse would like her to get some rest before the next feeding time. So we'll see what the day brings. It is kind of odd how much my anxiety goes down without that tube in her nose. She also seems to breastfeed better as well. We are not too hopeful that it will be able to stay out but it is hard to not wish for that. There are no tests planned for today unless they do blood work but we are still trying to figure out some insurance questions before we let them draw more blood. She seems to have recovered mostly from her eye exam with her heartrate down, breathing more regular and deep and her blood oxygenation more stable. So it also helps that her machines aren't beeping too much. Well, I better go. We love you all and will keep you updated as things progress. Love, Janelle

46 "normal" chromosomes

It has been about a week since some of you have heard from us! From the emails I’m getting, I’m gathering that it is about time for a more formal update from us to all of you that have been journeying with us over the last number of weeks. Just so you all know, we are sending more regular updates every few days to our family and those of you that have requested to receive them. Feel free to email me if you want to be on that list. Otherwise, we’ll try to do an update every week or so with the highlights. There are also some new pictures online at http://picasaweb.google.com/hesemyers under Nora Lynne Myers and some under Janelle’s Nikon 950 pictures if you scroll down to the very bottom. Now for a bit of an update on how all members of our family are doing.

Nora continues to remain a mystery to many in the medical community here. As of today we learned that all 3 variations of the karyotype (looking at her chromosomes) testing they did have come back normal – she has 46, she is a girl, there are no additions or deletions or variations at the ends of the chromosomes. So they can rule out a whole host of possible problems. The geneticist is recommending another round of blood work to do a chromosome microarray analysis, which is a comparative DNA study. This morning when I talked with Dr. Braddock (the geneticist), it felt like we were at least on the same page with our motivation for finding out what is causing some of Nora’s various issues. Neither Jason or I have a desire to go on a bunch of different rabbit trails of testing merely to get a label for Nora. However, if we can get an understanding of the root cause of some the things they see in her, it may help us both have a better understanding of what to expect in the coming years and may also give us clues of how we can best parent and care for her. However, we are very aware at this point that the most likely scenario is that we will be discharged before we know much more than we do right now.

Yes, they are starting to talk about discharging us. As of this morning it sounds like the week after Thanksgiving is the most likely scenario. Unless she begins feeding a lot better by bottle or breast, Jason and I will be trained to feed her via her little feeding tube. The main goals in the coming week or so are to continue to practice eating by mouth and to wean her off of her isolete (warmed box that has her little bed in it). She is moving in the right direction with both. She has been spitting up much, much less, which has lowered my anxiety being here, and has also started to put together that Mommy = food. She has started doing that very familiar rooting around and even gets good and feisty when food doesn’t come fast enough. Those are all welcome signs. We’re also starting to discover positions that she really likes and each little moment in which we feel like we figure out one of her clues helps establish a bit more of connection between us and this little one.

Her weight as of this morning is 1770 grams, up 40 from yesterday. She has been up and down with her weight but the overall trajectory is moving steadily up. In pounds, she is now 3 lb and 14.5 ounces. It feels like 4lbs will feel like quite a milestone and we are eager to celebrate that day which is hopefully coming soon. They have said often that around 4lbs babies are better able to regulate their temperatures, which is one of the main hurdles to going home.

Much of the other testing they have done has come back normal. Her vitals remain very steady in room air. Her MRI showed nothing of great concern. She is getting regular visits from occupational and physical therapists, which I have to admit at times feels just a bit overboard. She gets examined and poked several times a day and normally passes all physical exams with flying colors. She just needs to get a lot more padding all over her. I think both Jason and I are getting a little more confident holding her and moving her around but it is still by no means comfortable all the time. It has gotten easier the fewer wires and tubes and cords she has coming off of parts of her body. She only has her little feeding tube and then monitors on at this point. She is much happier with her little arms free to bat around at things, and that sometimes involves pulling at her feeding tube which we try to discourage!

Now for the rest of the family! Kali through us a curve ball this week when she woke up Monday morning with a drippy nose. So much for our plans to spend more time together at the hospital. Jason and I have spent this week tag teaming all our parenting. He is with Kali in the mornings and I in the afternoons and I’m with Nora in the mornings and Jason with her in the afternoons. I am glad to have focused time with both our daughters, but I miss having time all together as a family and being able to process more of this with Jason. I feel like we make a good team, but we enjoy being a team in the same geographic location. Kali is on the mend though and hopefully will soon be able to come see her sister again. Her cold has made us all more cautious when in the NICU and so Jason and I have been wearing masks with holding Nora – unpleasant but it is not worth the risk of her catching something right now.

Jason and I continue to ride the waves of this journey. I’m grateful we are journeying together in this. Jason, so far, has been much more of the steady one from day to day. This past week has provided some relief for me as I’ve had more breaks from the NICU environment. I also got my running shoes on for the first time since going on bed rest and have gotten in two invigorating walks in the cool November air. That, along with conversations with friends, family and others, has been healing for me. I have a track record of not being so gentle with myself, and have many reminding me that I don’t need to like the situation in which we are finding ourselves and that it is okay and quite normal to be struggling to feel the same connection with Nora that I did with Kali at this stage. I’m grateful for all of you surrounding us, supporting us, loving us and giving us a much needed different perspective from time to time.

Well, it is 1pm so it is time to head back and let Jason get ready for the afternoon shift. Blessings to each of you. Hopefully the next time one of us writes, we’ll have a clear plan for when our family gets to move back over the mountain. It’s hard to imagine that day, but we are all looking forward to it so much. Love, Janelle

Kali's sick, life's complicated

I think this will be a short update since there is not a whole lot to convey today. This is, I keep reminding myself, a good thing. Regarding Nora herself, the news is all neutral or good. After having lost weight two days straight (30 grams Sunday, 5 grams Monday), she’s up 60 grams today. An ounce is 30 grams. I think that puts her at around 3 lbs. 13 ounces, but I’m not sure. They think that around 4 pounds is when she may start to regulate her temperature dependably and maybe move to a crib. Once that happens, they will possibly become bolder about trying to wean her off the feeding tube.

So there are two big questions on our minds regarding Nora’s care. One is the big mystery question that is still not answered, and the other is, ‘When can she go home with us?’

As far as the mystery is concerned, they are still waiting for definitive lab results, but have so far ruled out everything it is in their power to rule out. That is to say, she had a basically normal brain MRI, a normal preliminary karyotype, and no other definitive findings by dermatology, neurology, etc. I expect the genetic tests UVA can do will yield no definitive results. There is apparently a lab in Rhode Island that my dear Mom has made contact with which may be interested in running their tests on Nora, but that is pending UVA exhausting their ideas.

Assuming test results that do not indicate an immediate health crisis for Nora, the questions yet to be resolved before we go home with her are more pragmatic in nature: can she eat by herself, can she maintain temperature, is she gaining weight, etc. We had hoped that perhaps Rockingham Memorial Hospital in Harrisonburg would be willing to admit her as a patient so that we could move this routine home, but that seems unlikely at this point. Nora’s doctor here called RMH, and they feel very tentative about having her there, because she’s such an unusual case. If she were a recovering preemie, it would be different. He said that he’d hate to send her there if they are tentative, because they might get scared about something and rush her off to UVA for no reason. I appreciated his logic. So chances are we’ll go straight from here to home. We may have to finish up the tube feeding weaning at home, but we’re sure hoping not. In any case, once we get home I’m sure we’ll be better off, but it may just be the beginning in terms of testing, if they can’t get this girl figured out while we’re here. Nora’s doctor assured us that they would do their best to bundle the appointments so that we wouldn’t have quite as many trips to make.

All of that feels pretty far in the future right now, even though it may be as little as a week away. We’re currently just trying to make this routine work, and be the best parents we can be to both of our children. Janelle continues to feel pretty taxed by this experience. It hasn’t helped that today Kali has come down with an illness. Whether it’s a viral illness (cold, etc.) or the manifestations of what looks to me to be an infected finger from getting it stuck in the car door the other day is hard to say. Janelle has her at a doctor’s office here in Charlottesville right now and I am eager to hear what they have to say about it. If Kali is sick, she can’t visit. If we are sick our visitation is also limited though not always totally denied. How to balance the benefits of the presence of parents with the risks of infection for such a vulnerable little one? We’ll have to look to the health care providers here for help in navigating this one. So far I feel fine, but Janelle is not sure if she’s caught it yet or not. Of course every twinge and drip that would ordinarily pass without notice seems to carry tremendous significance now, and for good reason.

We thank you all for your steady, constant support. It has made a tremendous difference to us. Jason

Wednesday, November 14, 2007

It’s now Wednesday around 11:20am and I (Janelle) have just stepped out of the NICU for a quick break before heading back in for the noon feeding. After not being here for about a day and a half, I came back in for the morning shift today. I spent yesterday mothering Kali who tends to be more of a mommy’s girl when she is not feeling herself. The doctor didn’t seem overly concerned about her finger or her cold at this point so we are to just wait it out and try to make her as comfy as possible and try to keep ourselves from getting it and passing it to Nora. It has complicated our lives even more as we try to figure out our schedule keeping Kali away from the hospital and other children until she at least isn’t fevered anymore.

She seems to feel, according to Jason’s report, much perkier today so hopefully it is moving out of her system. It sounded like she was enjoying a fun morning of outdoor playing and exploring with Daddy – probably good for both of them.

Nora woke up soon after I arrived this morning and was good and alert for her first feeding of the day. She did a good job breastfeeding before getting her tube feeding of fortified breast milk. When I left she had so far kept all of her breakfast in her belly. Her spitting up seems to be happening a bit less frequently and if that continues, my anxiety will likely diminish some as well. Yesterday evening she successfully took about 15 cc’s from the bottle for Jason which is the largest amount yet. That is about half of her feeding so we still have a little ways to go.

This morning her weight was down 5 grams (1/6 of an ounce). While it would be easy to feel discouraged, it was probably too much to hope for a big jump two days in a row. She has about 4 ounces to go before hitting the monumental 4 lbs.

This morning Dr. Kauffman mentioned their hope to get the final test results today and he also mentioned working towards getting us home next week. Nothing is definitive yet and while I’m so eager to be home again, caring for a 4lb little one on our own also feels a bit daunting right now, especially if we are still needing to do tube feedings at that time. It continues to feel like the best policy to try to take things one day at a time as much as possible!

Thanks to all of you for your support, thoughts and prayers. I am not sure how we would be making it without all those surrounding us. And I am quite convinced I would not be making it all without Jason’s steady and optimistic presence and Kali’s hugs and kisses and her enthusiastic “I love you Mommy.” It is hard to face feeling many times every day that I’m not able to mother either of my children the way I would like to right now. I feel uprooted and without control over so much right now. I’m working at finding the things that I am able to have some control over and am also taking the advice and encouragement of many to attempt to be more gentle with myself and to find ways to work on my own healing and processing of the happening of the last two weeks since Nora was born, the time preceding that and some of my fears for the future. It is quite clear that the journey is just beginning.

Thanks for the ways that each of you are present to us right now. Love, Janelle

Mommy on the brink!

November 9, 2007 (written mostly on Thursday, November 8^th)

Dear Caring Community,

I am sitting here in the lobby of the NICU, writing to you while I have a little time with absolutely no potential for parenting, and therefore can concentrate on writing. Janelle is at Dottie and Bill Scott’s place (our temporary home base) with Kali, and I am here on NICU duty, but they’ve got Nora down in the MRI room right now, so I am here doing some more waiting.

I’m not totally sure why they are doing the MRI…it seems to be a “just in case it might turn up some useful information” kind of thing. Maybe just in case her spitting up might be more than normal baby-with-full-bellyness, maybe just in case it might provide a clue as to why her head is normal-baby size when she’s half normal-baby weight? She continues apace, acting in every way so far like a normal baby who just needs to grow, and who happens to have some probably minor abnormalities. And she is growing. In fact, she’s growing more or less precisely the way the doctors might have expected (not that their expectations have been all that precise).

What all the doctors and other prognosticators who have examined this baby can agree on is this: she is a puzzle, and not just a little bit of one. Fortunately, so far she has not developed into a puzzle that needs immediate and drastic solving. She’s been actually very steady, and doing everything basically appropriately for her size, if not gestational age. She needs a lot of sleep, but gets mad when disturbed. She gets tired out by trying to nurse, but she is capable of the correct motions and does them at the right times. When she’s awake and alert, she opens her eyes, turns her head, and takes a basic interest in sounds and sights in her environment. All bodily functions seem appropriate. Furthermore, the more weight she gains, the more like a normal baby she looks. She is still scrawny without a doubt, but her ribcage is filling in a little, I think her little bottom is getting fatter, and her face look just like…well…a baby’s. All over her body the wrinkles are beginning to subside.

Janelle’s biggest concern has been that each time Janelle has been there for a feeding, Nora has refluxed a small portion of the milk they give her through the feeding tube. Of all the people who have a stake in those events, the person who seems most concerned about them is Janelle, and the person who seems least concerned is Nora. The nurse wishes she wouldn’t, because she’s concerned about her aspirating some milk, but otherwise doesn’t seem too flapped by it. The doctors are not panicked about a few ccs of milk per feeding. I could go through a whole list of possible reasons she’s doing this, including proportional stomach size, sphincter energy level, sensitivity to motion, etc., but in my mind the most likely explanation seems to be that she spits up after she eats. But seriously, though, it does seem related to stomach capacity and motion, and the goal is just for the nurses to learn her groove.

The more significant factor associated with this phenomenon is its effect on the patient’s mother. Janelle’s beat. She’s been operating on too little sleep and too little to do but worry. The NICU environment could hardly be less friendly to Janelle’s personality, but she has endured it for a week now in the interest of being a diligent mother and attempting to increase breastfeeding. It was the spitting up that finally pushed her to a recognition that the current situation was not going to work. It’s painful to see her so stressed, but I’m glad we’re going to be dividing the NICU parenting up a little. I am not nearly so rumpled by all the false alarms, crying babies, and medical machinery (at least not yet), and I have a basically positive intuition about this baby, whereas Janelle’s (possibly influenced by exhaustion and cabin fever) has been a little more morose for the past two days or so.

Baby stats and events:

Heart rate: nothing to report

Breathing: nothing to report

Blood pressure: nothing to report

Weight: up 45 grams (1.5 ounces) from yesterday

MRI results: pending (but neurology has examined her again today and says they will stop by this afternoon.

Genetic blood tests: pending

Cuteness factor: up 5 points since yesterday

Thanks for your interest! Love, Jason

P.S. Dottie and Bill have been so good to us. It was definitely the right choice to accept their offer of hospitality to us, rather than bunking at the local Ronald McDonald house. Kali is enjoying their preschool very much and we are all enjoying their kind and generous spirits in a diversity of ways both emotional and practical.

First day in the NICU

I’m sitting here in the NICU with Jason rocking Nora by my side. She seems to be very happy in his arms and has been sleeping contentedly ever since her Aunt Sue was here to hold and interact with her. We have been spending a lot more time by her side in the last 24 hours since she has not needed as many tests, pokes and prods and for that reason and maybe others she is much more content and enjoys being held and cuddled. We are enjoying hearing her cry less and seeing her interact a bit more with her surroundings in her awake/alert times.

We hope that we are striking a balance between overloading you with information and updates and not leaving you in limbo for too long. Now that we have started sending these updates to a broad list, we don’t want to drop people at our discretion. So, that being said, PLEASE let us know if you would rather not continue receiving our rather frequent and often lengthy updates. We promise to not be offended at all. You can also just not tell us and delete them if that feels more comfortable!!

Last evening I ended my evening reading an update my dad wrote about Nora and then watching a little video that Aunt Anna Benner created after visiting and taking pictures and some video footage. It doesn’t take much these days anyway to bring the tears but they came afresh and in abundance. But they weren’t all sad tears this time. They were tears of amazement at how much love is being shown to our family during this time. And how clearly this little girl has already made her mark on this earth – as one friend shared in an email, there is no doubt that little Nora “will not die an unlived life.”

If any of you would like to see pictures of Nora Lynne or the little video, I’m including three links below.

http://bennerfam.ning.com/

http://www.youtube.com/watch?v=NH9TlZeoNIg

http://picasaweb.google.com/hesemyers

I’m also including the two poems written by my Dad:

“The first was written on September 23^rd after I finished reading ‘The No. 1 Ladies Detective Agency’ by Alexander McCall Smith. This was a passage from the book that made me think of Janelle and Drimpy (nickname given to Nora by her big sister Kali early in Janelle’s pregnancy): ‘She was crying; for her own child, too – remembering the minute hand that had grasped her own, so briefly, while it tried to hold on to a strange world that was slipping away so quickly.’

Our Drimpy

So small
And staying smaller
Than she should be

Our love
Growing
And wondering

Will it be
A hello
And a goodbye

Will we have time
To nurture
And cherish

I pray for the grace
To value her life
Whether

Imperfect or
Whole

I love you
Squirmy
Drimpy
Grandpa

And on October 14:

Drimpy, Who Are You?

Drimpy, I wonder
Do I know you
So many details
Fingers and toes
Hiccoughs

Pictures galore
Yet, who are you
So small
A person I believe
But what personality

Will you enjoy life
Even if small
Will you laugh
And cry

We want to get to know you
Please, give us a chance
Grandpa”

In the last 24 hours, Jason and I have felt glimmers of hopefulness. We sometimes feel fearful of those feelings, worried that it is the “calm before the storm” or that if we celebrate the little successes we will have farther to fall during the hard times that are yet to come. However, I’ve decided that this is where having hope comes in and believing in this little girl, who has already shown us that she is not going to give up very easily. She has a bit of a reputation in the NICU for not enjoying being messed with and also for having the strongest grip of any baby around (that she received when they were trying to straighten her little hand to get an IV in…).

For those that want a quick medical update, I’ll try to be concise. As of this morning we still have no blood work results for which we are waiting anxiously. And we really have no more clear answers on what caused many of the things that Jason mentioned in his email. However, none of those things seem to be causing her distress at this point. She is still receiving some oxygen to keep her blood oxygenation levels up, but they are hopeful that this won’t be necessary over the long run. Yesterday she had a central IV placed so that they do not have to continue to replace her IV as her little veins were only standing an IV for about 14 hours. We were happy about this, as it means a less invasive needle in her arm, less sticks and more mobility for her hands which she likes. It also makes holding her easier! Her bilirubin level had gone up a bit yesterday and so they decided to start photo therapy which just means that she lays under bright lights with a little mask over her eyes. However, some jaundice is really common in babies and her levels were not dangerously high at all (Kali’s were much higher after birth), so they are still letting us hold her out from the lights as much as we want. The level was down some this morning so likely she won’t have to continue it after today.

So here are a few of the good things that have made us feel really hopeful, and can’t help but make us feel pretty attached to this little girl. Today she has latched on several times and gotten just a bit of her nourishment straight from me! While pumping and feeding her breastmilk through her tube is satisfactory for now, we are so happy to see her doing the sucking, rooting actions more consistently. AND she has turned the corner and is gaining a little weight. It is common for newborns to drop weight over the first few days before they level off and start to move back up. We are happy to see her doing this early on and as they increase the amount of milk she gets we hope that continues and grows exponentially! And last, but not least, we’ve had some really special content awake times where she looks at us and listens and engages with us. While I know that babies don’t really smile at this age when they feel happy, she has at least gifted us with some good and adorable smile reflexes and I’m sure she won’t mind if we attach some meaning to them for her!

Well, she is starting to grunt in Jason’s arms and it is getting close to another feeding time for her. I better get back to the work of mothering here and finish this update up for now. I know that I’m getting to the bottom of the third page and I feel like I’ve hardly started. Let me end by sharing a poem that Jason wrote this morning – a poem written to prepare for a new day and a poem written in hope for the future:

Watching your little
bones fill in with
flesh is like watching

A butterfly on a
twig, fresh from the
cocoon fill its
wings with blood, bright
patterns unfurling in the
sun. The difference is

You are my butterfly, and
I could watch
you
all
day
long.

Jason laughed when I wanted to add the phrase at the end, “if only I could keep my eyes open.” We are tired but thankful for the wonderful care we are receiving from nurses and doctors here at UVA and the wonderful emails that are flooding in to make us feel connected to our community even when we are physically absent.

As you remember us in the coming days, the big transition to come soon is that we transition to a home in the community tonight and will begin the commute to and from the hospital. Kali will be joining us in Charlottesville tomorrow evening. We are very much looking forward to having her with us, even though it will make our days more logistically complicated. Jason and I have both felt a bit like we are operating in two families of three (our “Kali, Jason, Janelle” family and our “Nora, Jason, Janelle” family). We are eager to have time now to start figuring out our “Nora, Kali, Jason, Janelle” family. We are so grateful that she has had a special week with her Aunt Karen and Aunt Sue and then with my folks in Pennsylvania. She still won’t admit to missing me very much!!

Blessings to each of you, Janelle