Our birthdays, an average of 30 years.

I am writing this update from Mom and Dad Myers’ place in Mt. Joy on Janelle’s birthday. We are glad to be with family, and enjoyed my parents coming out last evening for supper. We had planned for quite a different weekend, as I was going to be fishing in the New Jersey saltwater with my dad and father-in-law in my dad’s boat today, and we were going to be attending a wedding tomorrow. This course of action had been approved by our midwifery/obstetric practice last week, so long as Janelle reclined the seat while riding in the car, did NOTHING while not attending the wedding, etc. But we had another appointment on our way out of town yesterday, and that changed. Here’s how it went:

We went into the appointment feeling nervous. This was an ultrasound appointment, involving a 4-part Biophysical Profile. We knew that if this profile showed signs of trouble, we were not likely to get to go to PA as planned. To our relief, she got a score of 8 out of 8, and even showed improvement over the last time in terms of blood pressure/Doppler flows (her growth was not measured this time, since it had been so recently done that a growth evaluation would not have been too meaningful yet), so we breathed more easily and waited with little nervousness for the review with our friend Anne, one of the midwives. We expected to hear that the news was, in context, good, and that our current trajectory was still the medical advice. However, all of the doctors and midwives in the practice meet regularly to discuss all of the “problem cases”, and they had just done so that morning. Anne informed us that they thought we should be prepared for the possibility that, at our UVA appointment on Monday, the UVA docs might want to keep Janelle there and induce delivery shortly. Being prepared meant, according to her, three things: emotional preparedness, logistical preparedness, and steroid shots to prepare the baby’s lungs for life as a non-aquatic creature. Furthermore, she recommended we not travel to PA, partially so that Janelle could get the second in the series of 2 steroid injections, partially because they simply had misgivings about the level of activity.

Serious bummer!

Now what? Perhaps foolishly, we had come to the appointment with the car packed, including my having lashed a set of scaffolding to the roof rack of our Subaru to return to my Dad. Besides that, Kali was waiting for us in PA, having spent the better part of this week at Mom and Dad Myers’ place (enjoying herself thoroughly with play dates, sleepovers, and other adventures). We were, of course, still trying to absorb the news that we might have a baby next week, or at least that the NICU nurses might have our baby next week, while simultaneously trying to decide if we should accept the travel restriction without negotiation or not. I think both of us felt we needed to be around our parents, so we asked if we could possibly talk to the doctor directly about the travel, and make our case. We were able to, and it turned out the doctor’s main concern was getting that second steroid shot. When we told her we each had a physician for a parent, and we were sure we could arrange that, she seemed o.k. with it, but couldn’t quite concede the point of attending the wedding. Of course Janelle was upset about not being able to attend her old friend and neighbor Dana Reist’s wedding, and indeed we understood the advice as a judgment call that we could, if we chose, cautiously not take, but Janelle soon realized that with the new load on her shoulders, she wasn’t really up for a celebratory crowd anyway.

We decided to just go to Mt. Joy (Janelle’s parents) instead of first to Pennsburg (my parents), and to come home Friday instead of Sunday. Since my parents were able to change plans and make it out to Mt. Joy for supper, that seemed to be the option that was the least disruptive to our plans, and yet which allowed us a little more time at home to prepare for the unknowns of the coming week. Which are:

Might this baby need to be born this week? That will ultimately be up to us, I suppose. But in practical terms it depends on the judgments of the UVA docs. If Janelle gives birth to a baby girl Monday, we know that more likely than not she’ll be spending some time in the Neonatal Intensive Care Unit. We don’t know how much. Anne told us to think in terms of weeks rather than days. The judgments of the UVA docs will be based on the results of their very thorough evaluation by ultrasound of the baby’s health and growth. Based on our last session with them and on the reputation of the doctor attending Monday’s appointment, we anticipate knowledgeable, respectful, and kind interaction that can help us make informed decisions. We hope that they will see fit to recommend allowing the baby as much time in the womb as possible. Each week she can safely stay in gains all of us so much in terms of a healthy process and outcome.

If we are looking at a prolonged NICU stay, we may have to have a place to stay in Charlottesville for a while. Several friends, including Anne, have mentioned contacts they have in Charlottesville who have space or who may know someone who has space where we could stay. Any other ideas would be welcome, since multiple options garnered through personal contacts afford us, in my opinion, the best chance of a process that will work for our family. We are hoping to go to UVA Monday with a flexible plan in place.

And the big unknown is: Is something wrong with the baby? Clearly our caregivers think so. It seems most if not all of them are leaning toward some as-yet-unknown genetic or chromosomal anomaly or disorder. Being the natural optimist I am and the hopeful dad I must be, I am as yet unwilling to concede the point that her within-normal-range head shape, early (but now resolved) kidney abnormality, and failure to live up to growth standards constitute a package that clearly indicates such a disorder. I have family history reasons to point to for all of those, though my amateur interpretation of those reasons is naturally not as reliable as the professional one. Still, I’m clear that we must wait and see. However, as our friend Mike Higgins once put it (about other things, I think), we must hope for the best while preparing for the worst.

I’ll sign off now so this update doesn’t get too long, and so I can do some embroidery for the baby’s quilt. Let me just add that I feel more admiration for Janelle than ever as she manages to restrain her natural busy impulses and just lay around, while still being present to Kali and sensitive to her needs. If it was easy for her, that would be one thing. But it’s not, and she does it anyway. This is her least favorite birthday ever, of course, and it’s hard for me to see this day pass with little special enjoyment for her. We are hoping to celebrate our half-birthdays this year. We have no idea what shape our lives will have taken by then.

Thanks to all of you for your many messages and actions which have shown us your care and support. It has meant and will continue to mean a lot.

Love, Jason for the Myers-Benner family

P.S. Due to Janelle’s being off of work and Kali’s cooperativeness in being able to be entertained by Janelle or generous volunteers in a way that fits with the rest protocol, I and other generous volunteers have been able to make good progress on the addition. The walls are painted, electrical fixtures are in, and the new oak floor has the first coat of finish drying while we are away. Will we be able to move in before the baby comes? It seems doubtful now that the schedule is accelerated, but we’re a lot closer than we would have been without the good help we’ve received. Thanks.

P.P.S. If you’ve made this far this is Janelle adding a note since Jason didn’t mention it, that Jason will be celebrating his 31^st birthday tomorrow. We’ll be at home now together as a family, trying to savor some moments together. It felt so good to me last night to crawl into bed snuggled up with Jason and Kali. In those moments it is hard to not feel like everything is right in the world.

Monitoring and more monitoring...

It’s Friday evening just before 9pm – Kali is still chattering and occasionally coughing from the next room (the two of us are at the tail end of colds) and I’m doing my best to recline slightly on the left side while starting this letter to all of you. Jason is in the front room working on cutting knots out of our flooring to get ready for a second day of laying the floor. I’m going to risk annoying a few of you with yet another long letter and send this to all of you that received our last letter about a week and a half ago. However, please let us know if you would prefer to not be on our email list of updates as I know they may come more frequently in the coming weeks than they normally do.

While we have not been able to respond to all the emails we have received from many of you we have felt loved and supported by those near and far and for that we are very, very grateful. And we have also started to feel real tangible symbols of support from neighbors and members of our church and local community by way of visits to play with Kali, taking Kali on a special outing, bringing food, bringing a meal and staying to visit, coming to help out Jason in the front room, emails of care and concern, phone calls, etc… While it is hard for us to admit it, we feel the need for help and are making it our commitment to not turn it down during this time!

For those of you who knew of our appointment today and are wanting me to get to the point and give the baby update let me start with that and then you can choose whether or not to read further. Picking up where our last letter left off:

Friday, September 14: we had an ultrasound and appointment with one of the midwives (Barbara). They did not measure her growth since it had only been 4 days since they had done that exact thing at UVA. They did the doppler flow studies and the biophysical profile and once again she did fine on both (good forward doppler flow and she scored an 8/8 on her biophysical). For once we didn’t really receive too much new news, but did confirm that I was to stop working and move to a slightly modified form of bed rest (trying to spend at least 10 hours in bed at night – preferably on my left side – as well as 2 hours in the morning, afternoon and evening). The remainder of the hours of my day are to be spent resting as much as possible – though I was given permission to do small things around the house like get a meal on, hang out some laundry, and even go as far as walking to get the mail as long as those things are well couched in rest.

And that is what I’ve been attempting to follow this week. I’ve seen more of our hammock, the futon, Kali’s bed, the recliner and our bed than I ever have before. Kali and I have read lots of stories, played lots of Mastermind and other games, and I’ve eaten lots of varieties of “sand cakes” that she has made for me while I recline in the hammock. She’s been a trooper, even though we know these changes are felt by her too.

Tuesday, September 18: the next NST (non-stress test). My mom arrived Sunday evening and spent Monday and Tuesday with us which was wonderful. She significantly decreased the number of dust bunnies in our home, played with Kali, cooked for us, and was physically present which was good for me. She played with Kali while I was on the monitor at the midwives Tuesday. I think our baby girl is starting to know Shenandoah Women’s Healthcare because she starts to move and squirm the minute they put that gel on me and they start monitoring her. She got nicknamed “squirmy” this week by one of the nurses. She made getting a good reading difficult, particularly when she got the hiccups which interrupted the heartbeat reading. But she had great accelerations and once again “passed.” I was sent home to continue what I’d been doing and to wait for today’s ultrasound and check up on growth. And an anxious several days that was for me.

Today, Friday, September 21: we had an ultrasound with the same studies they are doing each week and in addition to that checking her growth and then met with Donna for our midwife appointment. Once again good doppler flow, though they did note that the systolic pressure was just a bit elevated compared to other times. At this point it still is good and forward flowing and not a problem but may be a tiny sign that it is possible things could start changing in a direction we would rather they not go (and would require early delivery if they determine she would be better off outside than inside). She got an 8/8 again by moving lots, showing her new found breathing skills (and sucking which she seems to like to do), having plenty of fluid and the placenta also looking healthy. But, she’s still tiny!

Her head is still the closest to “normal range” and has grown. Her little leg bones have also grown but are still several weeks behind and her midsection is also weeks behind and actually did not show growth since our UVA appointment. She is still well under 3 lbs by the ultrasound estimate (about 2lb 7oz). My uterus is also measuring slightly small, though it has grown some as well. And there are still really no clear answers as to the cause of the delays. It seems we are still facing a whole huge hopeful and incredibly scary range of possibilities. We will continue to go to the midwives two times a week and have our next follow up appointment at UVA on Monday, October 1^st. Until then the only specific advice I have to follow is to do nothing as much as possible and to eat more.

So how are we doing? I should probably let Jason speak for himself! While we are definitely in this journey together, I think our day to day experience of it all has been very different. And I think that he also tends to be just a bit more steady than I am! I think the best metaphor for me right now is a “yo-yo.” And a yo-yo that goes from level down and then back to level. I can’t say I’m experiencing many “high” moments these days but sometimes I get glimpses of feeling like myself, feeling like I can do this, feeling like our family will make it through this time, feeling like somehow I will find the strength to not just survive this but to thrive… But I will be honest to say that at least for now, I am experiencing a lot more doubts, sadness, letting go of dreams and expectations, fear for what the future holds for me, for Kali, for this little one growing in me, for our family, and having a hard time being still in the midst of that. I just want to go for a long, fast, get-my-heart-rate-up kind of walk to clear my head, mind, and heart and to get one of those brief but wonderful endorphin rushes (a natural side effect of vigorous exercise which I tend to experience distinctly)!

Well, I’m in danger of losing your attention, if I haven’t already, and the little girl in the next room has fallen silent so I have a good chance of not hearing “I have to go potty” for about the next 9-10 hours, so I should probably get to sleep. Thanks again for your thoughts, prayers and expressions of support. We are grateful and will continue to find strength in being surrounded by many persons who love and care for all four of us. Janelle

Ps. Just FYI that we are now online at home and I’m doing some work from home which means that I’m online several times a day and am always happy for notes from friends and family too. Also, for those of you that don’t have our numbers we no longer have a home phone number but each have a Verizon cell phone (Janelle: 540-269-2806 and Jason: 540-421-5983). We also welcome your calls.

Bed rest ahead

This letter will most likely be written over a number of days but I thought I would start it today – in the waiting stage of this journey that we are on. And I’ve chosen to send this letter to many of you on our mailing list who are not consistently on our monthly letter list but with whom we want to share the things our family is experiencing and to ask for your thoughts and support.

It will come as a surprise to those of you that have not heard from us since our Christmas letters that we are expecting a baby girl to join our family in November. Kali has been eagerly anticipating for months becoming a big sister and has already welcomed the shifting of furniture in her room to make way for the crib. Every time we go around and say what we are thankful for before a meal her response is “I’m thankful for Drimpy!” (Drimpy is her chosen name for the baby).

The expected arrival of a new member in our family and the continued process of remodeling our home has put off indefinitely our planned open house/party weekend that we had initially projected for our birthday weekend this year (September 28-30). And for the time being planning much of anything future oriented feels very difficult for Jason and I to think and dream about.

At our 20 week appointment (we are at 30 weeks today), they noticed minor pyelectasis (urine retention in the kidney) in the baby but were not overly concerned. This is fairly common and they just recommend a follow up ultrasound around 28 weeks. We had that ultrasound 2 weeks ago and the pyelectasis had diminished and was no longer a concern. However, they checked her growth and that became an immediate concern as she fell below the 10^th percentile which immediately gave her the diagnosis of “IUGR” – Intra Uterine Growth Restriction. And it put us in the high risk category and we got to look forward to coming into the office 2 times a week – once for a non-stress test and once for an ultrasound to do a biophysical and Doppler flow studies.

At the time, this felt like a lot to soak in and the tears for me flowed easily as we learned the whole spectrum of possibilities – early delivery, increased risk of both induction and cesarean birth, possible complications in late pregnancy, some long term issues for the baby. But we also held on to the hope that maybe she would hit a growth spurt or maybe she fell in the 40% of IUGR babies who are just tiny. For me, there was the recommendation to slow down, limit exercise and activity, get my feet up and rest as much as possible, eat at regular intervals including extra protein and try to make as much of what I take in available to the baby. Some of these changes were also feeling quite challenging as I seem to thrive on being on the go and, yes, on doing. And keeping up with Kali is not normally a “put your feet up” kind of job.

This past week was our first week of more in depth monitoring and the baby passed the non-stress test great on Tuesday. I was also feeling more movement as the week progressed and with increased movement came increased hope. When Friday came I did not expect new bad news. We actually decided to have Jason move forward with his work plans for the day and Aunt Karen met Kali and I at the midwives for the appointment.

What we were to learn in the next hour was that although she passed the biophysical and the Doppler flow studies looked good, she had now fallen below the 3^rd percentile and the ultrasound tech noticed 2 things in her brain that “don’t look right.” Before letting me go for the day, they also did a non-stress test to make sure the baby was not under stress which she was not. And that is all we know at this point and the waiting and worrying and fear at times feels almost unbearable.

Tomorrow, Jason and I head to the University of Virginia in Charlottesville for a more in depth ultrasound and to meet with a perinatologist. Kali is looking forward to a fun afternoon and evening with Aunt Karen and Aunt Sue and we are so grateful for their presence and support during this time.

This letter will continue after tomorrow’s appointment. For now we wait, worry, cry, hope but dare not to, etc… And for now, Kali and I head to meet Karen, Sue, Grandma and Grandpa Myers, and Daddy at Taste of Thai for lunch together.

Tuesday, September 11, 2007

Jason and I fell into bed exhausted last night after several hours in the car and close to a 4 hour appointment at UVA. We left UVA feeling somewhat confused about where we were at in this journey and how hopeful or not we should feel. The short run down of the appointment:

Our little girl put up with being watched and poked and monitored for 2 good hours by ultrasound. And she put on a show: she opened and closed her little hands, kicked her feet, turned the wrong way at times when they wanted pictures of certain things, practiced her newly found breathing skills, opened and closed her mouth, and overall acted just as a baby of her age should act. But she is undoubtedly tiny. Her heart looks good, all her other organs look good, the placenta looks good, the blood flow in the cord is good, the amniotic fluid is good, and most surprisingly of all, the doctor could not see anything in her brain that caused her alarm. That was not what we were expecting to see. While we probably should have felt elated we felt kind of confused – what did this mean now?

They had called a genetic counselor up to meet with us which also kind of made the whole thing feel more unpredictable and scary as they talked about the whole range of possible outcomes and went over a few possible scenarios. But as we left basically all we were given was that everything checks out fine, but your baby is very tiny and we don’t know why. They wanted to see us back in 3 weeks for a follow up and we are to continue with our appointments with the midwives in Harrisonburg. They did talk about recommending that I deliver at UVA but did not feel that early induction would be necessary and also weren’t recommending that I go on complete bed rest at this point.

On our way home we talked with our wonderful friend and midwife, Donna, whose enthusiasm and hopefulness at the report couldn’t help but wear off on Jason and I. It was just odd for us to be feeling happy and hopeful about being back at the “pre-Friday” news that had seemed so grave only a few weeks ago. So, the roller coaster ride continues… (Donna did not think that delivery at UVA was a must which was very encouraging in and of itself)

We slept, got up and were off to our appointment at the midwives. This morning she also passed her non-stress test. She was a wiggler and gave them a few good accelerations. She might have been responding to my increased heart rate as we talked with another midwife Anne (also a good friend), only to learn that in consultation with the doctor they are recommending that I move to bed rest to really maximize this baby’s growth. Again, we were faced with news that I had not been expecting. Thankfully, with only a little pleading, I’ve been given this week to prepare and wrap things up at work and start figuring out how to make this sustainable and hopefully in some ways positive and life-giving for our family (and I’m particularly thinking of Kali in all of this – though she seemed quite happy at the prospect of Mommy not having to go to work!!). We will have another ultrasound this Friday and appointment with the midwives and at that time will be given more complete instructions and a game plan for what is ahead. So for now, we do some more waiting and hoping and I do more breathing deeply and trying to slow up and rest and prepare myself for whatever lies ahead (lots of book reading, puzzle playing, games, and watching and absorbing Kali’s cuteness – I guess there are worse things).

And for now, I try to get things tied up at work (which means I have meetings most of the rest of today and need to get moving). I have felt so supported by family and friends and very much too by my work colleagues. While I am assured by many of them that I need to be focused on this baby and our family right now, my sense of responsibility and commitment to my work and the people I work with and for is making this a hard transition for me, when I had fully anticipated having another 2 months plus to “get things in order.”

One of the things I was told this morning is that I will get good practice at asking for and receiving help from others. This is not a skill I’ve honed well yet in my life. I thought our house project was stretching me enough in that arena but it looks as if that may not have been the case. I’m sure that Jason and I and Kali will grow in ways we couldn’t have imagined months ago and while that will not be easy all the time, we are hoping for grace as we take it a day at a time.

Love, Janelle