Nora's Free!

Dear loved ones,

She’s free. Her last gift to us was that she did not linger when it was time to go. We do not feel that she was in any way suffering. Her lung function had been steadily decreasing over the past few days, and this evening after her cousins Joshua and Sabrina had visited her, things seemed to accelerate. Through the night there was a steady increase in her work of breathing, and a corresponding increase in the doses of medication we used for her comfort. She stopped breathing while resting in Janelle’s arms with all of the tubes, probes, and monitors removed. Soon after she passed around 4:15 a.m. (June 4), a beautiful, swift thunderstorm swept over Charlottesville, with brilliant flashes of light. My comment to Janelle was, “the atmosphere just doesn’t know what to do with a spirit as big as Nora’s.”

This has obviously been the hardest moment of our lives. It has also been, along with the births of our two children, one of the most awesomely beautiful. Nora died the way she lived: courageously. Probably nothing could have ever been done to change the fact that Nora was going to live a brief life. We feel that every reasonable thing that could have been available to her was made available.

Janelle and I are experiencing waves of sadness combined with waves of relief in untidy combinations. We have, over the course of these seven months, adjusted our expectations for Nora’s life so many times: far beyond what had known was possible for us. Even here at what turns out to be the end, we were prepared to work to accommodate her needs into our lifestyle and to assure that she had the most fulfilling life possible for her. And I think she did have the most fulfilling life possible for her. It was a good, good life. In so many ways Nora was so unlucky. Likely there are, at most, eight recognized cases of her condition in the world genetics literature, if we understand correctly. But she was who she was, and I know in my heart that she was a lucky girl, because we loved her like crazy. And we are lucky, too, all of us, for having known this precious child, the likes of which we will almost certainly never know again.

We are not looking forward to this morning’s hardest work of telling Kali about Nora’s death. Please remember her as she copes with the loss of her prized and precious, if limited, little sister.

I am sure many of you will be contacting each other or us to know what you can do to help, and I am sure of that because of our precious experience with community that has gotten us through the last ten anxious months. We don’t know yet exactly what will be helpful to us, but please know the following: we are o.k., we feel blessed beyond measure, we love you, and we need you. Particularly we already feel that we will need to be around babies. Earlier today our friends and neighbors Kristin and Phoebe Yoder Kaufman visited our family, and Phoebe was such a light to us. Her visit was the last time Nora really perked up and paid full attention to the world beyond her body.

We have another request. We have come to understand that our family’s unfolding story has been circulated more widely than we had originally anticipated when we set out to keep our close friends and family informed through these semi-regular updates. We find ourselves wondering just who and how many of you there are by now, so our request is that if you have been willingly receiving these updates on any kind of regular basis you would simply send us a message confirming that that is the case and including your name and physical location, along with any other contact information you would like us to have. If you wish to include any comments regarding what sharing this journey with us has meant to you, for that we would be grateful, as we have been compiling supportive communications into an unedited document that has now reached some 300 pages in length, and which will be a source of strength for us in the times that surely lie ahead for us as we grieve Nora’s physical presence in our lives.

I guess we’re going home today.

With a sorely grateful heart, Jason Myers-Benner, for the entire Myers-Benner family.

Most of my (Janelle’s) reflections will wait for another day. I’ve busied myself with cleaning up on our room here on 7 West, sometimes with clear vision and sometimes through tears. Every time I accidentally close a door loudly I find myself flinching worrying that I’m waking Nora from slumber. As I walk onto the ward to get coffee for Jason and hear buzzers I automatically wonder if it is Nora’s monitors going off. I find myself in a state of disbelief that we have really come to this place, that Nora’s physical presence is no longer with us.

One thing that must be mentioned in this update is that Jason and I feel incredibly blessed by the care we have received in this place. We have had nurses and doctors cry with us, as they have competently cared for us and Nora until the very end. At the beginning of the night, when Nora seemed to be working harder to breath, it felt to both of us that Nora was sharing that the time had come. And, in many of the ways that I feel I prepared for labor for our children, I found ourselves preparing the space for Nora’s death. We pulled our little mattress over as close to the oxygen and monitors as possible and lifted Nora’s little body down onto a blanket between us. That is where she stayed until I lifted her into my arms to cradle her as she took her last breaths. We talked to her, cried with her, shared memories and thanked her for all she taught us. Her nurse, Molly, was absolutely amazing, immediately present with us as needed and letting us to be with Nora as much as possible.

I know for myself I will need to write more in the coming days. For now, I want to share a poem that my Dad wrote in the wee hours of the morning after we called them.

NORA’S FREE

I hear the birds singing

Nora’s free

Left us she did

Amidst peals of thunder

The heavens welcoming

A vibrant spirit

While the earth slept

Her fist raised

Binky in hand

When I left

Yesterday

“Grandpa,

I can do it”

Do it she did

Held too little

So fragile

Yet

Loved so much

Both ways

Gifted by a final knowing glance

After a goodbye kiss

I love you, Nora

Now the heavens have her

Great Grandmas

Cradle her

In their loving arms

They’ll hold her much

And love her more

While we grieve

And hold each other

God, encircle us all

Amen

Comfort Care

Monday, 9:45pm and I write this with the dim light of the computer and the soft light in Nora’s room. The hospital noises outside are dulled by the Songs and lullabies for children of the world CD that has been on repeat in Nora’s room ever since we moved to 7 West several days ago. Jason is comforting Nora as she drifts to sleep, being disturbed occasionally by her worsening cough. I’m cheating a bit on this update and copying below what my Dad sent around this afternoon from here in Nora’s room after they arrived with Kali, who I’m quite convinced grows taller and cuter with each absence from us. I heard she got stretched by my Uncle Jon so she may in fact be a bit taller. She was loved on and cared for so well in the past few days by relatives in West Virginia and for that Jason and I feel so grateful. This evening as the two of us took a “little explore” through the hospital I was asking her how she possibly could have survived without me, her mommy, for five whole days. She very sincerely said that she could because she has such good Grandma and Grandpa’s. Nora, even in her very tired and worn out state, was clearly interested in Kali’s arrival. We’ve felt for a number of days that she has been looking for her. We are glad she is here, even as it is so hard to know how to journey with her in the uncharted waters we face ahead.

From: Herb & Sarah Myers
June 2, 2008

Dear Friends,

We are back in civilization - Charlottesville. We have not been able to keep you updated since we headed for West Virginia last Thursday. We had a good time there but our minds were torn between WV and VA. I know I sent a very pessimistic email with sad pictures. I felt bad about that when Nora seemed to rally even before we left for WV. Hence I've attached Janelle's collage showing sweet smiles from that day yet. Janelle and Jason are saving all these special gifts from Nora in their memories as it seems her way of comforting them.

Even though the smiles and coos have continued, Nora's condition fluctuates but overall seems to slowly deteriorate. Janelle yesterday suddenly noted how Nora's cough reminded her of her Grandma Bucher's cough before she died of pulmonary fibrosis. They asked the doctors about this and they are entertaining this as a possible diagnosis.

Today they had a meeting with most of the specialists involved in Nora's care. They felt there is little else to do. If Jason and Janelle wanted they could to lung biopsy and repeat the cardiac catheterization but doubt Nora could survive the procedures. They also are not likely to add information that would be helpful to Nora and may increase her suffering.

As a result of that meeting, Nora is on comfort care. She continues on oxygen along with an opioid for comfort. Her tube feedings are breast milk only. She seems fairly comfortable.

We are the ones who are uncomfortable as we think of saying our goodbyes and living on without Nora who has become such a part of us. We are also trying to help Kali to understand as she is able and wanting to talk about losing her sister. We don't know how long the dying will take. Janelle and Jason are dealing amazingly well with all of this. Even that makes the tears come for me…Herb

I’m not sure I have the energy to put in writing all that is swirling in me from the events of the last 24 hours in particular. What I do know is that this little tiny person has made a big imprint on our hearts. My journey from the beginning with Nora has been one of many emotions for me, sometimes emotions I struggled to understand. And now as I face losing her, I am scared. How do I help sustain her in dying just as we have worked to sustain her in living? And how do we journey on as a family? Since the day Nora was born, I have struggled with wishing many times that we had never gotten pregnant. And I’ve struggled with guilt for feeling that way. How could I wish someone away that I helped to bring into this world? Was I not comfortable with a child who would look different, who would need special care, who would change my life in ways I felt I hadn’t bargained for? I would find myself yearning (selfishly, it felt) for our pre-Nora days when I had choices and freedoms that I felt were stripped from me because of her needs. I felt bitter at times for the way that Nora’s presence zapped me of any extra energy for Kali. But we will never get back our “pre-Nora” days. And I’m glad, as much as I’m heartbroken. And I hope that Nora’s life has had enough precious moments in it to make it worth it to her too. I wish she would be able to understand that her little body was anything but weak, that her personality shone through the struggle, that she taught me so much in such a short time and that she will be missed more than I can begin to comprehend at this moment.

This paragraph through blurred vision has taken me a long time to get out and Nora and Jason are both sleeping. I should join them, but I’m not sure sleep will come easily. I somehow feel I should stand vigil, I should soak up every breath that Nora takes. She has gifted Jason and I with some precious moments in the last number of days. We will cherish those. In the coming days, we will walk beside her as best we can, advocating for her comfort and peace of mind. And we truly feel that we have medical professionals that are journeying with us with care and competence.

We are uncertain of our plans for the coming days. We hope that time will bring clarity to Jason and I. Do we keep Nora in the hospital for the duration of her life? Do we work to get her home? What is best for Nora? What is best for Kali? Who do we want to surround us as we journey with Nora in life and death? For the next few days we need to be here. We are working out learning her cues and having those here help us know what medications or other comfort measures will best address various signs of discomfort. And we will try to listen to Nora. We want to let her tell us when she is tired of holding on and when that time comes we will beg for strength to let her go. And we will tell her that there is strength in letting go, that she can do it, that we will always be so proud of her. Janelle

Dulcimer music and thoughts of home...

This evening our friends and neighbors Samuel and Margaret Johnson came here to Nora’s room on the west wing of the seventh floor of the UVA hospital and paid us a visit. They had brought one of their fine, simple meals along, which tasted and smelled so right, in ways hospital and restaurant food never could, and they brought with them the warmth and caring that they take with them wherever they go. It was all most welcome.

Samuel had also brought his new dulcimer, and after we ate and chatted a while, he got it out and played some for us and Nora. Janelle commented that if she closed her eyes, she could almost imagine she was home (Samuel has played his dulcimer at our house with some frequency). After a while, Nora seemed to want to lay back in her crib (Janelle had been holding her), and I went to her bedside to try to help her fall asleep. This involves returning her dropped binky to her hands as needed and rubbing her head and patting her. Samuel and the dulcimer provided the context.

And somehow that did it. I am an emotional person at times, but in my adult life am not prone to crying. But soft light, a taste of home, old time music, and friends that care; the transposition to this context and after the days we’ve been having cracked the nut. I was grateful for the release of pent-up feelings and for the safe space into which to release them. The music seemed to sooth Nora. When they left, she was soundly asleep. Her oxygen saturation was at 100%, and her heart rate down to 130. She was at peace. I laid in the dark on the sleeping mat we have set up for us in the corner of her room and thought about things.

When Janelle returned from seeing them out of the hospital she laid down next to me and asked me what my tears meant. I told her “about forty different things.” After talking briefly about it, she wondered if I would be able to write a little about it so that she (and you) could understand a little more, since she knows that writing is probably my best way to accurately represent my feelings and perspective. Thank goodness for that backspace button!

Nora’s care regime has recently changed in subtle but significant ways in response to her not turning the corner towards health as quickly as the doctors had hoped. She is now on a program of energy conservation aimed at building up her reserves of strength. This will also theoretically maximize her efficient use of calories to build and heal body tissues. In practical terms, this means that tube feeding has moved to 24 hour steady infusion, so that she doesn’t ever have to deal with a full belly. Also breastfeeding is being reduced to a comfort measure only, so that she doesn’t have to work for her food. Lighting and other stimulation is minimized, as is medical monitoring. She receives scheduled Tylenol doses to minimize discomfort. I’ll add that this is assumed to be a strategy to get her “over the hump.”

To our surprise, Nora has responded to this care regime by taking to it very well. She is usually resting pleasantly, usually only rousing herself to express a need for a diaper change or to interact with weaker versions of her characteristic smiles and coos.

This is evidence that this is just what she needs right now, and it probably will give her the best chance to find her path out of the woods. But for Janelle and I this is also a letting go. Our baby now needs rest and quiet more than she needs to be cuddled and held (though she still needs bedside presence, attention to needs, and gentle touches). For Janelle particularly this is a change because over the past hours Nora’s craving for breastfeeding has noticeably diminished, and her difficulty with the mechanics of it noticeably increased, or rather Nora is now allowing the difficulty of the task to dissuade her from trying wholeheartedly. Janelle and I sense a fork in the road coming up.

The options for what might be wrong with Nora are getting few, as are the solutions. We are beginning to feel that we are rapidly reaching the end of the medical community’s list of ideas. If attempting to achieve fluid/calorie balance fails to produce the desired result, it seems as if nobody knows what comes next. It’s sort of the last good idea, so far as we can tell. And it very well may be right, in terms of this acute situation. I certainly feel that, assuming what is going on is what they think is going on, we are doing the right thing for Nora.

What is perhaps serendipitous is that in my opinion we are doing the right thing for Nora even if we’re barking up the wrong tree in terms of causation, because the current strategy is based on keeping her comfortable, which Janelle and I have been clear is our top priority for Nora’s care. Things are too uncertain for her future for us to allow her to suffer now.

For me, Nora’s situation is really still very muddy, but as I said the options are limited both in terms of Nora’s possible diagnosis and in terms of her treatment. This has allowed my mind to spend some time considering where we are on this journey, and to find ways to characterize things that make sense to me. So here goes: I feel in some ways that Nora is withdrawing, and feels grateful to do so. I am not saying that I think she is going to die now, although with each passing day I have to admit that seems more possible to me. She might just as well be withdrawing for the purpose of healing. This is emotionally resonant for me, as I am an introvert who withdraws into himself daily for healing and rejuvenation. But as I mentioned above, it does feel that Janelle and I are needing to release her, or at least let go of some of the ways of caring for her that are so familiar to us, and that is frightening, because we don’t know if we’ll ever get her back. Some might say that we are releasing her into God’s hands, some might say into the hands of the medical powers that be. But I feel that we are releasing her to herself.

I may need to hold her lightly, but I am still her father, and I have a job to do. She needs me to be there to look after her comfort. She needs me to (gently) defend for her a territory in which she can work out her healing, or can peacefully and calmly let go of the need for healing. Many people have admonished us to take care of ourselves, by which they seem to mean that we need to get out and do something else for a while. I understand what they are saying and there is lots of wisdom in it. But for me right now, being at Nora’s side is the best thing I can think of to do for myself. This is exactly what I need, because it’s exactly what she needs. Seeing her work for her health is an inspiration to me…I realize how much she has to teach me about hard work. Also, there is the very real possibility (not a strong one, according to the doctors) that these are the last days we will have with Nora while she is of a clear enough mind to perceive our love and care. I don’t want to give up any of my minutes with her.

I am aware that if this letter goes out in its present form, it will be something of a tear-jerker, and for that I apologize. But I also know that many of you have been following our family’s story closely, and are invested in knowing truthfully how we are experiencing all of this. Having had a few minutes to think today, this is where I find myself. It would be dishonest to say we never feel self-pity or feel a little ganged up on by the universe. But mostly (I’ll speak for myself) I understand that nobody did this to us. I understand that nature’s strength lies in its ability to accommodate imperfection, even thrive on it. Nora’s body is a graphic depiction of the downside to this strategy. As humans, we naturally reject letting nature have its way with our loved ones, but there are limits to our ability to hold back the tide. My challenge, as I see it, is to immerse myself in this very human endeavor without being consumed by it. To be open to what it has to teach me about life and love. Nora’s life may be as long as yours or mine, or it may be over soon. Our job is to provide for it to be a good life, well lived, no matter what. Jason

Privacy Curtain

I’m hoping life will soon slow down enough that daily updates won’t seem necessary. It feels good to write that we continue to have a happy baby on our hands!! She even cooed and smil­ed for one of the nurses today. As of this morning she has been relieved the burden of at least 5 cords and 5 sticky circles all over her chest that have bothered her for the last number of days. They are also only checking her blood pressure every 4 hours instead of 1. They are ready to release us to the main floor as soon as there is a bed available. Right now there are children who have been in the Emergency Room for 2 days waiting for a bed and about 5 other ICU patients waiting to be transferred to the main floor. So we aren’t packing our bags yet and honestly aren’t all that anxious to go. It is likely we’ll be moved to a double room and are hoping beyond all hope that we aren’t paired with someone who enjoys having the TV on for constant entertainment. But it’s probably a waste of time and energy to worry about that at this moment. Nora and I are enjoying peace and quiet at the moment while Jason enjoys a rare bathroom break and a walk down to the ground floor and back up for a quick spurt of exercise.

Jason and I both got a little more sleep last night on our small single mattress window seat here in Nora’s room. It was interrupted with a few rough spells, including her first good throw up in weeks. Of course I was ready to curse Neosure which had been added to my milk for the first time that evening. It’s not that my milk has been all that successful in making Nora grow, but it was harder for me than I anticipated when we started the continuous flow of fortified milk into her g-tube last evening. I guess my quest for purity in parenting has long ago been diverted to a different, more human and flawed path, but it was just another moment of feeling my inability to meet Nora’s needs without medical help or in this case Similac. As it turns out, Nora is probably not overly bothered by the fortified milk (4 oz of breast milk to ½ scoop of Neosure formula) and was most likely prompted to spit up by stuffing her blanket in her mouth. Regardless we wondered if we were headed for another set back, particularly when I picked her up and was quite sure she felt fevered (turned out to not be higher than 100.3 which no one was overly impressed or bothered by).

Since that time she has been more or less content, until right now when they loudly announce over the intercom right here in her room that respiratory is needed somewhere in the hospital, waking her from a very peaceful nap. So many things about this setting either want to make us scream, cry or in some moments laugh because we are tired of crying or trying not to scream. The poem below was commissioned by me and written by Jason this morning about one such thing. Sometimes it’s the little things…

Privacy Curtain

There it goes again.
The baby is sleeping! What
can the builders of this room have
been thinking?
Nurses knock lightly, open
the door gingerly,
JERK OPEN that curtain
(the baby startles, settles)
tiptoe over, whisper
softly, do their job with
utmost deftness, slip
away,
JERK CLOSED that curtain
(the baby startles, looks around)
ease the door into place, and
leave.

On another note we have really come to appreciate Dr. Noreen Crain (her grandmother’s name was Nora), who is a palliative care and pediatric ICU specialist, and who is currently the main doctor charged with maintaining the synthesized, big picture perspective on Nora at UVA. A conversation last evening was especially helpful in simplifying the picture for us to the degree possible. But more than that, we felt she understood and cared for our family. Another poem by Jason:

Last Light of the Day

We are talking about our
daughter’s life; her
potentials. We are
three people who care, standing
around her crib, by this seventh
floor window. There
is nothing good about the overzealous
constriction of lung blood
vessels. But her doctor
came and spoke with
us, gently, assuming
nothing but our competence. She
couldn’t tell us all that we would
wish to know. But her
careful answers, kind, were
an illumination. The long,
low rays of amber
evening light shone through
my wife’s hair, refracted
in the doctor’s glasses, softened the
lab coat’s whiteness. It
will be easier now to
wait for the first light of
morning.

It seems that there are so many different lenses through which we can view this whole experience. I made two collages of pictures today that I think show the contrast (see attached). There is the whole array of monitors, medical equipment, lack of color and beauty and freshness. Then there is Nora and her intense desire to interact with those things and people familiar to her, and to figure out the things not so familiar (like how she might dismantle her I.V. arrangement with her little mouth).

As we think about Nora and her future, we can do the same thing. If we look at the very short term Nora is improving – there is no doubt about it. She is happier, her saturations level are high, she is tolerating feeds, she is smiling and cooing and interacting in pleasant ways. When we look at the long term there is really nothing but a lot of questions, only a few of which I’ve listed here:

Will Nora’s set of challenges conflict in such a way that she will be unable to thrive?

Can we limit fluid to combat pulmonary edema and heighten calories to promote growth successfully?

Will her pulmonary hypertension be treatable or will it significantly shorten her life?

What will her childhood be like if she is granted the chance to experience it (not to mention adulthood)?

Our conversation with Dr. Crain was helpful and also sobering in some ways. We talked with her more in general about what life is like for children with pulmonary hypertension. She shared that they tend to be self-chosen couch potatoes in many ways – they just don’t feel good when they are active. With treatment they can attend school and walk around the house, but don’t choose to do much more than that. I’ve found myself already wondering what things will bring Nora life and energy and passion. If I have a guess, I’m thinking books will be high on the list. The nurse who cared for her during a meeting we had today said she was very intent on being the one to turn the pages while she read her little board books. It is clear she wants to experience life, and Jason and I are committed to giving her a good chance at experiencing it to its fullest, whatever “fullest” means for her.

I think that’s enough for today. My turn for a much needed bathroom break (and maybe the luxury of a hospital shower…) Janelle

How is Nora doing??

If all a person ever saw of Nora were the pictures in the collage accompanying this update, that person would be tempted to wonder what all the fuss was about. When she’s not doing as well, it doesn’t exactly occur to us to grab a camera. Also, her shocking wrinkled skin on her arms especially doesn’t tend to get included in the viewfinder.

About twice in a twenty-four hour period a resident will come and ask, “So how’s Nora been doing?” (I think this is a scheduled check-in to get the parents’ opinions). Whenever I open my mouth to answer that question, it feels like the answer is too big and garbled to make it out of my throat. I end up saying something like, “Well, her saturations were good most of the night, but she went through some low times, I was pleased to see her heart rate reduced, so maybe the diuretic is working and there’s more room in there, but then this morning she’s had to endure a few procedures and seems to be recovering slowly, but we’re not sure if it’s that her hypertension is worse today, and then she slept o.k. for a few hours and then was pretty restless for much of the rest of the night…”

a) That is a run-on sentence: a whole lot seems to be happening all the time
b) It is not a direct answer: it is totally unclear to us whether things are improving
c) My brain is getting fried from trying to synthesize so much information

We, in short, aren’t really sure how Nora’s doing. At this point a general average of the medical opinions we’ve been presented with recently would probably be something like the following:

First, there are no guarantees anyway but especially not for your kid because she’s kind of uniquely unique, medically speaking. Second, she clearly has an underlying issue of pulmonary hypertension which is playing into everything in ways that are never helpful, nor very predictable. Third, we think you’ve been overfeeding her (as per UVA instructions) now that the feeding tube enables that, and she can’t handle the fluid volume, which has resulted in pulmonary edema (waterlogged lung tissue) which may take some time to resolve, but which we think we know what to do for. Fourth, your daughter is picky about her oxygen delivery system and has selected one that usually is only used in the ICU, so she’ll have to improve a little and get on a homestyle oxygen delivery system before she’ll be considered stable enough to go home, and we don’t know how long that will take. Fifth, we don’t think your daughter is sick enough to be in mortal danger right now and we think we’ll be able to stabilize her, assuming she follows a somewhat typical human health pattern in terms of lung disease recovery.

Since nothing seems to make much sense to us right now, it’s hard to tell if their optimism is sensible or not. We are certainly in no state of mind to judge. I am personally doing my darnedest to keep up with all of the new lingo that comes with each layer of discovery about my daughter’s medical profile, and I think I’m doing a pretty good job of that, considering. But while I have a strong need to keep abreast of the medical issues at stake, I am realizing that it is for the purpose of doing my real job of being Nora’s daddy. She has some of the finest medical professionals in the world racking their brains about how to bring her around…I cannot imagine that my troubleshooting or diagnostic contributions could be anything but dangerous to her if pursued, since my understanding of medicine extends mostly to those parts of that vast body of information to which I have been exposed through their being of immediate and critical pertinence to the health of those close to me.

That is not to say that I feel Janelle and I should passively accept the treatments recommended to us for Nora without question. I think our role as her parents is vitally important to her making it through this feeling as o.k. as possible. And that, in turn, is a substantial contribution to a positive outcome for her in two ways: First, people who feel better do better, generally. Second, what’s the point of getting better if you are too miserable to benefit from it? So far it has seemed that, besides providing the animal and human comforts she expects from us (cuddling, stroking, interacting, reassuring, warming, etc.), we are the guardians of her personal needs. We are the only ones who can guess whether she’s bored or anxious or in pain at any given time. Also, she trusts us to respond, and so she expresses her needs to us, when she might not to others. A professional care provider is focused on changing her medical situation to a more promising state, but can have no concept of whether the timing of their intervention is appropriate to the patient’s daily routine or current needs.

An example: Nora was doing pretty well with her oxygen this morning. Dr. Lehman bumped her down to 1 liter on high flow and she didn’t seem to notice, so they transitioned her (fairly roughshod, in our opinion) to the garden variety nasal cannula. This went not all that well, but she managed to eat afterwards and go to sleep on a higher oxygen requirement than we expected; still she was stable. Not five minutes after she zonked out for a precious nap, the echocardiogram team showed up. It is not possible for a 7 month-old child to sleep through that procedure. By the end of it, the x-ray lady was skulking around hoping for a picture of her chest, and she was needing more oxygen yet. After more feeding, the x-ray, more feeding, she was settled and napping again with me holding the extra oxygen right at her face to keep her saturations up while she slept. She had been sleeping a few minutes when the respiratory therapist, who is very good at his job, I think, burst in and let me know loudly that he wanted to switch her back. I bit my tongue and whispered to him that I preferred to wait until she finished her nap, was willing to hold the oxygen mask the whole time to keep her levels up, and would wish to talk to a doctor about it if he felt uneasy about the idea. He kindly went and fetched the doctor, who seemed to be treating me gingerly when he arrived, but we soon agreed (after he heard about her morning) that we had time for a nap, as long as I understood his tune would change if her oxygen levels dropped. I assured him mine would too. We smiled at each other, they left, and Nora got her nap. I don’t think it’s arrogant of me to feel that Nora woke up feeling a little better, and her afternoon began to improve from that point on (probably more due to getting on the right machine again, but still…).

Learning the ropes, Jason

PICU

9:30pm After over 15 hours in the PICU today without much of a break from the action (including nursing Nora often more for comfort than nutrition, meeting with countless health professionals and continually having my vocabulary, brain and emotions stretched to the limits, and trying to ignore beeping monitors) I feel pretty fried by this hour. As I type, Nora is doing her low grade “I’d rather be nursing that getting a g-tube continuous feed to fall asleep to” fussing and Jason is singing to her. I hope sleep comes for her soon as it has been a pretty tiring day for all and she really hasn’t had a good nap all day today.

Before I try to bring you all up to speed on the happenings of the last 24 plus hours, I want to do a big mass “thank you” to all of you who are receiving these updates (we realize our “update list” has expanded well beyond the borders of those that we know). We are grateful for the many emails sent with words of support and comfort and caring. And we are thankful for the many offers of help (and may take many of you up on the offers once we land back in Keezletown). I look forward to the day when I once again have the luxury of responding to each and every email but the days right now have gotten to the place where that is not possible. But know that all the emails are read and they help to sustain us, as do the phone calls even when we can’t answer, the thoughts and prayers and the visits.

Speaking of visits, I know some of our Harrisonburg community will likely wonder if we want/need visitors. While we’d love nothing more than to be physically surrounded by loved ones and our community during this time, our current accommodations are not great for meeting that need. The setting in the PICU is somewhere between that of the NICU where we were after Nora was born and 7 Central where we last were. The regulations are a bit more stringent and particularly with Nora’s condition of pulmonary hypertension and the desire to keep her calm as possible, no more than 2 persons are to be visiting her at a time – and that would be mommy and daddy right now. It is possible at some point we will be transferred out of the intensive care and at that time may welcome some visitors. However, I continue to feel a bit baffled by all the people who “want a piece of us” while we are here. We aren’t sitting around waiting for action most of the time. And the “only 2 persons” rule definitely doesn’t apply to the medical persons. I think at one point today when Dr. McGahren from Pediatric Surgery stopped by to look at her g-tube, there were about 8 or so other persons with him (his nurse, residents, medical students).

So a quick run down: From what we can gather, Nora did not really enjoy her first helicopter ride. We gather this from a number of nurses noting how “mad” Nora was at them when she arrived. By the time I arrived later in the evening (thanks so much to our good friends Risha and Mike who chauffeured me here so that I didn’t have to drive alone), things felt pretty grave. She was up to about 5 liters of oxygen with her saturation levels still not staying as high as they would like. They switched to a high flow nasal cannula and that is what she remains on up until this point, currently at about 2 liters.

Both Jason and I felt really grateful last night to have two incredible doctors on that sat with us in a conference room here in the PICU and spent well over an hour talking with us. It happened that the attending doctor on also happens to direct the Palliative Care Center here. It was helpful for me to finally have a place to say some of the things that have been welling up in me; to express the fears and to express the desire for Nora to receive care here but to keep her comfort a top priority.

At this point the dominating hypothesis regarding what is going on is: too much fluid. You’ve got it – we’ve been “over feeding” our baby. Does that make me want to scream? YES! We brought Nora in for a g-tube so that we could get more milk into her little body and help her to grow. The jury was out whether she could tolerate the increased feeds. The team from our last stay worked with us to get her to what they considered “maximum feeds” before we were sent home. We went home with instructions on what she “should” be getting daily and we did our very best to follow that. However, we were concerned that she just seemed really full so in the last week or so had actually, after making some calls to UVA, adjusted the feeding regimen down a bit. What we have been told by the current team is that the amount prescribed for her is way more volume than a baby of her size with pulmonary hypertension should be getting.

So where does that leave us? Right now they are giving her a diuretic 3 times daily to try to help her get rid of excess fluid by urination. Besides that we are lowering her feeds to about 20 cc’s/hour (with quite a bit of variation depending on how much she nurses). Tomorrow they hope to get our permission to start fortifying my breast milk to up the calorie content so that she can get more calories with less fluid (and the nutritionist today seemed very doubtful that my milk really was tested to be 26 calories/ounce until she asked us where it was tested and we said here in their NICU and then she mostly seemed baffled since she had never heard of anyone’s milk have that high a caloric value). Tomorrow they plan to do another echocardiogram to check if there have been any changes in her cardiovascular status. They have done another chest x-ray and feel that her lungs look somewhat better. Today it has felt kind of like a waiting game. Waiting to see if the medicine helps. Waiting to see how she does with the lower amount of volume. Waiting to see what we learn about her heart. Waiting to see what is around the next corner in this journey.

Jason and I are journeying together in this and are once again balancing each other out – in other words we are experiencing this differently and at times have divergent feelings about how Nora is doing or what we think is coming down the pike. I’m sure from reading our updates no one will be surprised to learn that Jason continues to be my eternal optimist and continues to root for Nora and will do everything possible to give her the very best chance at reaching her full potential. And today she cooed for him a lot at one point and when I was holding her I am convinced she was looking around for him until he came to her side and she got to play with his beard to her heart’s content. I’m pretty sure if he was the one lactating she wouldn’t have near as much need for me!

I think I have partly shifted into “self-preservation mode.” I’m scared to hope again. I’m just not sure my emotions, until I have more sleep under me, can tolerate too many more waves of the magnitude we have ridden in the last day or two. And there is something so strong in me that is crying out for some kind of relief for Nora and for those of us close to her that are loving and caring for her on a daily basis. While I know on one level that it is unlikely Nora will be permanently scarred from this time and most definitely that she won’t consciously remember this time, her cries continue to break my heart.

I also just long for the freedom to pick her up and walk her and cuddle her without wires that tug and pull and frustrate her (and me). I haven’t counted but we are pretty close to our NICU quota of wires and transferring her from bed to arms and back is no small task, and definitely not one for just one person. So she has every right to feel a little bit cranky right now.

She has now settled and is breathing more easily than we have seen her do in awhile and I’ve only seen 100% on the saturation monitors for the last 15 minutes or so. What changed from one hour ago when she was desaturating into the 70’s and crying and coughing horribly? (Jason interjects here that it seemed horrible to the parents but the respiratory therapist was pretty unimpressed). That is why we are here, to try to find out and then to try to determine as best we can what kind of care we need to provide for Nora.

I’m already over my quota of space and I feel like I’ve just started. But tomorrow will be a new day and there will more to share with you. Nora is sleeping so we dare not miss our chance to get a little rest too.

One of the things making me feel so grateful tonight is the WONDERFUL care Kali has received in our absence. Once again Kristin and Phoebe came down for us to go to the doctor yesterday afternoon and Kali was with them (and Carl) until my folks just arrived at our place in Keezletown about 2 hours ago. I can’t say all that is happening in our family’s life right now made for a very Happy Birthday today for my dad, but at least Kali got to hand deliver his card to him on the actual day. Kali will be with Grandma and Grandpa now until next Tuesday, going on a mini-vacation to West Virginia with them and will be the Myers-Benner representative at my cousin Jason Bucher’s wedding on Saturday. We’ll get a glimpse of Kali tomorrow when Mom and Dad bring her to visit and will hopefully get our “Kali kiss and hug tanks” restocked. We miss her!

But Nora makes us smile too. She is insistent right now on figuring out books. She gets frustrated if you help her and really wants to look at them herself. It is cute but one of these times she is going to clunk herself good as even our tiniest books are a bit heavy for her little hands. She has also endeared a good number of nurses to her with her pacifier antics. We need a big sign on her crib that says “baby LOVES pacifier, will NOT suck.” I came in one time to find a nurse trying to calm Nora by trying to stuff her pacifier in her mouth and Nora being quite frustrated at her. I had to explain that our baby fiddles with her pacifier, inspects it from all angles and chews on various parts, but she does not suck it. And she continues to take in everything that goes on around her and everyone that walks in the room. She has clearly not given up her interest in life!!

We continue to feel grateful for good and attentive care providers, who have taken lots of time with us (making us feel at times they have nothing better to do than talk with us for hours – thanks Dr. Braddock – when we are well aware that there are many persons vying for their attention). Jason and I are a bit more vocal this time regarding our needs, our assessment of Nora’s needs and trying to make sure we have a clear picture of the plan for her care. Hopefully this doesn’t wear too much on those working with us, but we are weary and in need of as much and as clear information this time around as is possible (with our baby who is “writing her own book”).

I want to end with one of the poems that Jason’s sister Christie included in an email to me this morning. What more to say for now? Janelle

from Hafiz, Sufi poet:

WE HAVE NOT COME TO TAKE PRISONERS

We have not come here to take prisoners,
But to surrender ever more deeply
To freedom and joy.
We have not come into this exquisite world
To hold ourselves hostage from love.

Run my dear,
From anything
That may not strengthen
Your precious budding wings.

Run like hell my dear,
From anyone likely
To put a sharp knife
Into the sacred, tender vision
Of your beautiful heart.

We have a duty to befriend
Those aspects of obedience
That stand outside of our house
And shout to our reason
"O please, O please,
Come out and play."

For we have not come here to take prisoners
Or to confine our wondrous spirits.
But to experience ever and ever more deeply
Our divine courage, freedom, and
Light!

Airlifted to UVA!

Please, be praying. Nora is at this moment being airlifted by helicopter from Harrisonburg to University of Virginia. She has been having increasing respiratory distress. Pray for Jason and Janelle as they try to be there and make decisions. That's all for now. I must run as I just got called for a stat consultation at Good Samaritan Hospital in Lebanon as I'm on call tonight. I hope I can think. Herb

From Janelle: I honestly don’t know what to write in a few words and in the few minutes that I have. It has been a nightmare of an afternoon for Jason, Nora and I. In the last few days we have noted signs of more respiratory distress in Nora – increased breathing rate, coughing, grunting and needing more oxygen to keep saturations levels up. Today our home health nurse came out and after checking her wanted us to try to get in with her pediatrician today yet. Kali and Jason came home early from school and we headed to Dr. Aston’s office around 3pm. He made a call to UVA and came back with the plan – we go straight to the ER, he will meet us there, and they are sending the team from UVA to pick her up and transport her (without us) to the PICU at UVA – back to 7^th floor of the University Hospital. It all feels like too much. After tears and deliberation with Dr. Ashton and trying to know how to make decisions regarding Nora’s care with so much uncertainty, we headed to the ER. Dr. Ashton left his practice and spent close to 3 hours with us for which we are grateful. I went up to labor and delivery to pump milk to send with Nora and found our wonderful friend Melody Mast who was the midwife on call and she spent about an hour with us in the ER. Her presence was amazing and Jason is on his way to UVA with her car as I type. Our friend and neighbor Ben Pellegrin was working in the ER and brought us water and checked in on us and graciously offered their home to Kali for whenever she needs it. At this point we really don’t know for sure what is going on but her chest x-ray is not clear. She will likely under go more tests but what that will entail we do not know. It feels like a blur of activity, a blur of horribleness…. When will this end for Nora. She seems so confused by the whole thing. I feel like I’m abandoning her! I wish I knew what relief looks like for her. I wish I knew what mercy meant in this situation. I wish I knew how to mother her. She is probably arriving at UVA soon if not already by helicopter. We really have no idea what is ahead. I’m struggling to think enough to pack, clear our week’s schedule, close up the house, and then try to face Kali and know what to say to her and find a place she will be most comfortable in our absence. As always, we are grateful for your thoughts and prayers! Janelle