Nora Lynne Myers

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

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

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

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

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

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

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

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

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

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

Over 3 pounds

It’s time for another update and though we have no more information on the baby’s long-term prognosis, we do have some actual information to give to you! We will be heading to UVA in one week from today for a scheduled induction, so at least we know when we will learn more. We are to arrive around 1pm on Monday, October 29^th to get admitted and settled in and they will likely start the induction process sometime Monday evening. So hopefully this baby will have an October 30^th birthday, which she will share with her Great Grandma Matson and it is also her Aunt Jenn and Uncle Ethan’s wedding anniversary. I’m hopeful she will not share her birthday with Halloween!

So that’s the quick update. I did want to share a few other reflections from the last week’s events and from today’s appointment. Keep reading if you like all the details!

I should say that there are a variety of things keeping life interesting for us these days. I’ve been sleeping more restlessly with baby dreams, labor dreams or other odd dreams. At other times I wake and my mind spins for awhile before I can settle back down. Well, last night Jason and I were both awakened with a start at a very loud sound of some loud machine running continuously in our house. In our half-awake state is was very, very unsettling. As we both catapulted out of bed, with me hollering “what is that?”, for once Jason had no explanation. I have to admit that a panicked feeling flooded me that all the work on the house was about to be history as something horrible in our house was malfunctioning. All of a sudden I recognized the sound and I said to Jason, “it’s the compressor!” (I was impressed at myself for identifying the sound first!!). He had forgotten to unplug it at the end of the day and it had clicked on when the pressure got too low. Needless to say we did not go back to sleep easily!!

Other things in our life have been much more calming, healing and reassuring. Last evening Kali and Jason headed up the hill to hang out at Samuel and Margaret’s home and play there while I was joined for a “blessing way” in our home. Five Shalom (our church) women, who are also good friends, neighbors, and/or mothers, and women who I admire and feel very comfortable with, planned an evening full of ritual, readings, and various ways of showing support to me as I journey toward the end of this pregnancy and the birth of our daughter. It had hardly started before the tears flowed freely. I think initially it was just a feeling of being overwhelmed by the care and support I felt in that space – how often do we attend events that are planned entirely with us in mind. The candle lighting, weaving of yarn together, a basket of pampering products for me, foot washing and various readings and other things, all filled me with a sense of being surrounded and supported by those in the room and many others who have been journeying with us in the past number of weeks. I felt stronger today as we entered another appointment at UVA as I looked down and saw the red yarn around my ankle and remembered that 5 other women will be wearing that and looking at it and remembering me until our baby comes home.

Today Kali got to enjoy a wonderfully fun afternoon with Aunt Sue while we traveled to and from UVA. Our ultrasound was once again somewhat uneventful, other than this little girl making it very difficult for them to get an accurate Doppler flow reading. The ultrasonagrapher said she would have gotten a 12/8 on her biophysical profile if that was an option. She was super squirmy, making some of the testing a bit of a challenge. She was practicing her breathing like a real pro and we were happy to see the amniotic fluid levels solidly above 7. And finally Jason and I couldn’t help feeling surprised when her estimated weight was an entire 3lbs 9oz. Yes, still incredibly small, but we had to admit it was more than we were hoping for at this point. Yes, she’s still weeks and weeks behind and likely won’t be a whole lot more than that at birth, but it just sounds better than 2 lbs. So as we waited for the perinatologist to meet with us to draw up a plan, we were certain it would be about what we were expecting. Shouldn’t we know by now NOT to try to guess what comes next?

Dr. Saller came in (the last of the 4 perinatologists and the only one we hadn’t met) and introduced himself in a very professional and kind but not overly warm way. He said he had been reviewing the chart and it is clear she is not growing as she should be and that at this point being at 36 weeks there is probably not much to be gained by waiting a whole lot longer. She is not likely to mature much more and there are “lots of bad things” that could happen and not much good. For that reason, and in consultation with Dr. Laschley who was the one on in labor and delivery, they would recommend that we move forward with delivery and even plan for us to stay for induction today if that is okay with us. My “no” may have been a bit too emotional and forceful, but it just kind of slipped out!

After we talked a bit about how we wanted a little time to prepare and plan for care for our daughter and about the fact that we also were not expecting delivery before 37 weeks if all other tests determining her well-being showed good results. We went back to the waiting room while he called the other two doctors (who we had really liked) and then we met with him for a second time. We both felt like in the interim we had become real people to him and we felt like the second encounter was much more positive. He was very flexible with us, letting us know who was working the labor and delivery ward when and allowed us to have much more say in the process.

So we left feeling like we had the best plan we could hope for considering all the circumstances. Monday night’s shift is with the one doctor we really liked and Tuesday’s day shift is with the other doctor we really liked. That is very reassuring for me to know that I’ll know at least one of the care providers who will be with us in labor.

Now we enter our last week of waiting and wondering, but with a focus on preparing for the week to come. We are hopeful that having this time will enable us to make the best plan for Kali’s care in the days while I’m in labor and in the hospital and while we need to focus on the initial care of this little girl. We are eager to meet her and to know what challenges we will journey through together.

Thank you all for journeying with us. I would like to close with a poem that was shared with me last evening that is also on the candles that each of the women will light when I go into labor and will leave on until our baby is born. Love, Janelle

Pledge to my Children

May you anticipate your children’s birth, her childhood and her

Life and encourage her to look forward too.

May you watch her flourish and discover her home in this

Magnificent world

May you nurture her innocence and never forget the sacred

place it comes from.

may you show her the way of wonder and walk along beside her.

May you stand for her as a parent and a friend, valuing her

dreams just as you value your own

May you voice your feelings honestly, and honor the promise you

Make.

May you listen to her thoughtfully and give her the freedom to

expand her own mind.

May you envision her happy future, always mindful of the

Precious, present moment.

May you embrace her and enjoy her with your heart open wide.

by Andrea Alban Gosline, Lisa Burnett Bossi, and Ame Mahler Beanland

Celebrating Motherhood

Back to UVA....again

A quick (I promise) update from our household:

First a piece of good news: as of yesterday we passed our final building inspections on the room out front. We intentionally tried to plan that for yesterday knowing that today’s appointment could send us in a new direction yet once again. It feels great to both of us to feel like this one small hurdle is past us. We are not exactly close to done yet but we now have the ability to choose when we want to move in and no longer have to deal with scheduling inspections. One thing behind us! We have decided together that we will not move in before the baby and likely will wait until we are very close to, if not completely, done. For one, I want to be able to help. And, more importantly, it just doesn’t feel like such a huge priority in the light of other developments of the last month or two.

We had a full ultrasound this morning that showed some good things: 8/8 Biophysical, good forward Doppler flow, and even some better looking black pockets of amniotic fluid (up slightly measuring about 6.6cm). However, her growth is still very, very behind and not even keeping up with her own curve. Her mid-section has really shown no growth since our last UVA ultrasound putting her about 5-6 weeks behind. Her weight is still less than 3lbs.

I feel like a broken record but once again we felt unprepared for the next step. After feeling slightly encouraged by the good things on the ultrasound report, since we didn’t really expect much growth, we were not ready to be sent to UVA yet today. We head there for a 3pm appointment in which they will do another ultrasound and then we will meet with yet another doctor we haven’t met with yet to talk about the remaining prenatal care we need to receive. At this point it does not seem that the recommendation will be for immediate induction but that we are likely going to be making more frequent trips to UVA and back until the time for delivery is determined.

I imagine we’ll send another update this weekend with what we learn today but I thought I’d send this out awhile for those of you following our updates closely and so that anyone who checks email before 3pm today can be thinking of us as we once again have this little one closely assessed.

We’re hanging in there, Janelle (for Jason and Kali too)

Ps. A more practical request – if any of you receiving these emails have close connections with persons who had premature babies and would want to do any scouting for us in terms of hand-me-down preemie clothes we would welcome that. I’m not able to go out and scour second hand stores and the online looking we have done has been very discouraging in terms of how much you can spend on very bare bones preemie clothing.

7:30pm: We are home from UVA and winding down for the day. It was a record appointment in terms of time – in and out in less than 2 hours (but still a 5 plus hour stint with travel time). No matter what happens at these appointments, Jason and I both feel a bit drained emotionally and physically after them. Kali once again had a wonderful afternoon playing with her little playmate next door (Reese). We are so very grateful for our neighbors, Ben and Leslie, who have graciously opened their home to Kali many times recently, and on short notice like today. Kali enjoys playing with Reese, but is equally fond of holding their baby Hunter.

Our UVA appointment was helpful in that we got to meet the 3^rd of the 4 doctors who could be with us during the birth of our little girl. Dr. Blattman was as gracious with his time and our questions as the previous two doctors had been. He was also the most humorous of all the ones we have met with so far. My dad dared me to put one of his quotes in this update letter, but I think I’ll refrain.

Their recommendation is that we continue as we have been, with only one slight modification and that is that we have no more ultrasounds at Shenandoah but just go there for our NST’s. We will do that twice this week and then if all goes well with those, we will move forward with our Monday UVA appointment on October 22^nd. We will have an ultrasound there again at that point and then will schedule our induction and meet with someone in their prenatal clinic.

They did not do any measurements today as they feel like doing measurements in a span of less than every 3-4 weeks does not provide any helpful data. The fact that she is giving them all the signs that she is quite happy inside is all they need at this point (as we are just approaching 35 weeks) to determine that she is still better off inside of me for another week or two to continue developing, even if she is hardly growing at all, if any.

It seems that we have lots of puzzle pieces but they don’t make a very neat put-together puzzle at this point. So we will continue to wait and I get to continue to monitor fetal movement closely in between appointments.

We are looking forward now to a weekend at home together and a visit from my Mom tomorrow and Sunday. I can’t say that I’m doing great with the “bed rest” thing when I spend all day going to various appointments. I look forward to several days at home with no scheduled appointments.

Well, Kali is busy blowing kisses to Jason so maybe I’ll see if I can divert her kisses to me so Jason can read over this update and then we’ll send it off to all of you. Janelle

Waiting and more waiting!

9:45am: I have about a half hour here at home before heading into Shenandoah Women’s Healthcare for an appointment first thing this morning. I thought I’d start a letter to you all since Kali is happily playing on our other computer (yes, we went from NO computer to two computers with high-speed internet so I can work from home some), which is bit more of a common occurrence in our home than I would like it to be but these days a number of things are not as we would normally like them to be.

We debated sending an update out this weekend but ended up just soaking in some extra time at home knowing that soon enough it would be time to send another one. Friday brought more unexpected news. I went alone to my appointment at the midwives and learned that the amniotic fluid levels had dropped to dangerous lows (normal is 10-20cm and it had been somewhere between 11-15cm the last few weeks – Friday it had dropped below 5). We could have headed right to UVA for me to be admitted for monitoring and repeat testing but decided to have repeat testing Saturday at RMH (the local hospital).

Once again we packed the car as if we would not return home until after the baby was born. Kali went to play at our neighbors’ home with her friend Reese and we said goodbye as if we would not be back that day. It was a hard parting for me and I think even Kali was starting to wonder what was going on (mommy and daddy keep packing and acting like this baby is going to be born and then show up again several hours later…). We were all getting tired of the continual preparation for the big event, only to be sent home to keep waiting, monitoring movement and wondering what will happen next.

Jason and I spent all morning at RMH having a repeat non-stress test (which was reactive – which is good) and then another ultrasound. She didn’t move much during the biophysical and so only got 6 out of 8 on that. The fluid levels were above 5 but not by much. Jason and I were sure we were off to UVA for an early induction at just shy of 34 weeks, so we were beyond surprised when they recommended that we return home and that we keep on the same monitoring schedule with an additional ultrasound early this week.

The past week has been more difficult emotionally for me and I think I can say the same for Jason as well. I think we both feel on edge from all the waiting and it is hard for the stress to not impact our ability to relate well always as a family. Kali has been doing so well overall but it seems that by the end of the day we are all a bit more prone to meltdowns and have less ability to deal with little things not going as we would like. I felt like we went into Saturday’s appointment at the hospital with quite a bit of apprehension about what was ahead and it felt like an odd sense of relief to come home when we had been gearing up for something very different. For me, a lot of anxiety right now is connected to my need to be closely monitoring fetal movement and to feel like movement continues to be quite sporadic and sometimes hard to monitor.

I was very grateful for two good days at home with Kali Saturday and Sunday and it felt like our time together provided a bright spot in the midst of a lot of darkness. I keep trying to reassure myself that we have an amazingly strong, resilient little girl in our family who will also make it through this time. And I’m so grateful for our wonderful neighbors who have been so supportive in very tangible ways during this time investing time in Kali and relieving us of the worry that Kali will not be well taken care of when we can not be as physically present to her as we want to me.

4:30pm: We are at home and Kali and I once again find ourselves both “working” on the computer, this time to the background noise of a circular saw. Jason is working on the porch posts and railings, which is one of the final things that must be done before we can get final inspection on the front room (this doesn’t imply that we are close to done, but that all the safety and structural things are done such that we can get permission to move in whenever we want to). We have no idea if we have any chance of getting moved in before this baby will need to be born, but we keep moving forward as we are able.

Today’s appointment was a record quickie! We were in and out of there in less than ½ hour. She performed well for the ultrasound as usual – this time didn’t turn away but stuck her tongue out at us numerous times. She is probably pretty sick of being monitored too. The Doppler flow looked good as did the biophysical (they weren’t really doing either but Lori checked that stuff anyway and unofficially gave her 8/8). The fluid levels are still hovering right between 5 and 6cm. However, Lori and I both agreed that subjectively they look slightly improved from last Friday when I was there alone. It was reassuring to see some nice, though little, black fluid pockets around her.

So we are back to our Tuesday/Friday schedule for the remainder of this week anyway. She reassured me this afternoon with a good bout of hiccups and some good squirms, so I can at least relax for the rest of the day. Tomorrow we’ll have a non-stress test after I am in the office for several hours to try to get a few things done that I can’t do from home while Jason and Kali enjoy their Tuesday afternoon volunteering session at Shenandoah Valley Community School (SVCS is a learner-centered democratically run school in Harrisonburg that we are checking out as a possibility for Kali for several days a week, combined with some home schooling). We are trying to find ways to help life feel at least a little normal still for Kali with some routines and things for her that continue to remain stable. She has really enjoyed spending time at SVCS and getting to know the three little boys that are students on Tuesdays when they are there (Jericho, Lucas, Noah). Jason also enjoys his time immensely. While I’ve not been there in person other than visiting during an open house, I get lots of good laughs from Jason’s stories. This past week my favorite was about them writing a school newspaper. When Kali got there she was quickly invited to take part. They had been trying to work on the sports section. They were about to go do some sports so that they had something to write about. J I think, if I remember correctly, they got very involved in their sports and I’m not sure that the school newspaper ever got written after all.

Speaking of good laughs, I had my first in a long time last evening.
My aunt Elizabeth passed the following link to my dad who passed it to us.  
I think it may be my daily “medicine.” 
http://birdloversonly.blogspot.com/2007/09/may-i-have-this-dance.html 

Thanks again to all of you who are journeying with us through this uncertain time. Love, Janelle

Heading Home Again

I’m typing in the car as Jason and I head back on 64W towards Harrisonburg. Yes, we are on our way home to pick up Kali and to sleep in our own beds. That was definitely one of my wishes for today and for that I am grateful. After about 4 ½ hours of appointments at UVA, both Jason and I are feeling a bit glazed over – feeling full of information, full of emotions, and continued uncertainty. For those reasons and others, this will be a short update. We are grateful to many of you for your thoughts and prayers today as we anticipated this appointment and we’ll continue to be upheld by them in the coming weeks which will no doubt hold lots more waiting, wondering, hoping, fearing, etc…

The quick rundown on today’s appointment:

We had an ultrasound in which the baby received an 8/8 on her biophysical profile in short order. The Doppler flow studies also looked fine. It was the growth measurements that had me most concerned and it was easy to see quickly that she had not grown by leaps and bounds at all. Once again her head was much closer to “normal” size but her mid-section and bones were all measuring weeks behind. I was not anticipating “good” news at all when Dr. Chisholm arrived.

He was not able to be clear about a diagnosis either but seems to be most suspicious of some type of skeletal dysplasia. He did point out a lot of things on her that he thought were good signs: no fractures in bones, good mineralization, normal shape, good chest shape, good ratio of lungs to heart in chest cavity, good rib shape, etc… (these things most likely ruling out more serious life-threatening forms of skeletal dysplasia). He didn’t see any reason, and actually felt there were a lot of reasons not to, induce labor at this point. As long as the Doppler flow and the biophysicals continue to check out okay, he recommended that we plan on an induction at UVA closer to 37 weeks.

We then met with a neonatologist and got a brief tour of the NICU. The neonatologist was equally gracious with our questions (we had many) and also was clear that many things will remain unanswerable until this baby is born and we understand more of what her particular challenges may or may not be. He did feel that the longer she can stay developing in utero, the less likely there will be a need for an extended stay in the NICU.

We were so grateful to have our good friend (and soon to be midwife at Shenandoah Women’s Healthcare), Melody, with us for the appointment today. We were glad that she didn’t need her “labor shoes” that she had worn just in case, but her physical presence and support meant a lot to us.

Melody was also with us at Kali’s birth and it was hard today as we met with various people to think about how drastically different this whole experience has been from my pregnancy and preparation for Kali’s birth. I feel like my “ideals” for childbirth and for postpartum care of a newborn are having to be thrown out the window and with that many of my hopes and dreams for what that initial time of bonding and connecting with this little person could be like. As so much of this pregnancy journey has become medicalized and monitored heavily, it has been hard to avoid feeling an increase in feelings of disconnectedness with this little person growing inside of me rather than an increase in feeling connected. It adds to my anxiety around childbirth and my ability to handle the many unknowns ahead of us.

Well, we are nearing home and I promised this would be short (I’m not sure if either Jason or I are very capable of being succinct about much of anything these days with our swirling thoughts and emotions). But home we go to continue as we have been – one day at a time, one hour at a time, one appointment at a time…

Thanks again for journeying with us, Janelle