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

More questions than answers

In a moment of intense emotion Janelle wrote (but never circulated) soon after coming home from the hospitalization where the feeding tube surgery was done :

"A few days not like herself and then she’ll bounce back." Is this bouncing back? Crying miserably…low oxygenation levels…struggling to know how much to feed her and when…not being able to get close to her belly without her grimacing…leakage of milk and some blood from the tube site…crying with a look of fear and panic in her eyes…walking around connected to tubes all day, unable to stray more than 50 feet from the concentrator…unable to sit up well, use cloth diapers, enjoy normal mobility because of the button not being healed…having monitors that beep and alarm us…fears of the future, fears of the unknown, fears, fears, fears.

Is this all worth it. For Nora? For Kali? For us? What is ahead – more invasive medical intervention? More long hospitalizations that result in more questions than answers? More suffering for her little body? More separation from Kali?...

Exhausted...

It’s been just over a week since we brought Nora home from UVA, and also a week since we’ve updated you. Our silence stems from a combination of factors: lack of time for anything other than the bare essentials (and sometimes even those things aren’t getting done), lack of words to describe what this week has been like for each member of our household, and something in me wanting so badly and wishing that if we wait long enough we might have a more hopeful and encouraging update to circulate.

I’m writing this on the morning after one of our worst nights yet since arriving home from UVA last Saturday afternoon. It continues to baffle my mind and cause my heart to ache that the procedure that had been recommended to bring our family relief is creating anything but. It may be that relief is right around the corner and if so Jason and I are eager to experience a taste of it. Since we have come home, it has been a whirlwind of learning: trying to figure out maneuvering around the house with the oxygen tubing, watching Nora and trying to constantly trouble shoot what is causing her pain or discomfort and what feeding regimen will work for her, balancing monitoring her oxygen levels enough to catch a problem time but not so much that the numbers rule our day (and in the last few days feeling worried as we have had to use higher levels of oxygen to keep her sats in the range they recommend), not having a clue how to balance the needs around the house with our energetic almost-5-year-old’s need to play and to have stress-free time with Mommy and Daddy, needing time to connect with Jason and talk about all that is going on but not wanting to do that in Kali’s presence, now using a feeding tube to boost Nora’s nutrition but seeing how desperately she needs nursing for comfort and connection and trying to figure out how to get both for her, watching her g-tube sight leak milk and sense how fragile that area still is as it seems to bleed at the slightest bump, etc…

We’ve had several visits from our home health nurse (for Mom’s side of the family they may be interested to note that she is Sharon Lambert – soon to be Sharon Kisamore, marrying Uncle Jon Bucher’s old Harman buddy Dave). Nora is currently about 5-6 ounces more than she was when we left for UVA to have the g-tube placed. So if weight gain is the goal, I guess we have experienced some level of success. It just has come with A LOT of grief and on a very gut level hasn’t felt very worth it.

I know that medical professionals would say that Nora is better off now than she was before our week stint at UVA – that it is a good thing we caught the pulmonary hypertension now and can work at treating it. I know that they feel that in the long run having a feeding tube for boosting her nutrition and administering medications will be essential for her growth. I’m not sure I have good reasons to dispute this other than it pains me to see her continue to be miserable and to suffer lots of discomfort and to feel like I only get very small glimpses of the baby I was getting to know pre-surgery. Yes, we have gotten some smiles and some coos since we arrived home. But the balance is still tipped towards fussing, screaming, grunting, and expressions of general misery.

We had really hoped this would make nights more manageable for me in particular. Currently it just seems that both Jason and I are up a lot. He is the pro at the tube feedings so handles 95% of everything related to that. However, she gets really worked up often times when she is only getting tube feedings and not nursing. So we now have a tedious balance of nighttime continuous feedings and her nursing in addition to help settle and calm her. While we’d like to get to a place where she doesn’t need to nurse much at night (so we can once again get more than a 2 hour block of sleep at one time), having her get worked up and crying makes her oxygen saturations plummet and the pressure of her bearing down and crying makes the leakage from her site much worse. So we feel pretty caught, not to mention that it is heartbreaking to see her cry like that, particularly when it comes with a look of fear or panic in her eyes that I don’t remember seeing prior to this week.

So I find myself having a hard time not asking some big and difficult questions – about Nora’s care, about our highly advanced medical technology, about quality of life versus quantity of life, about choices and lack thereof, about what it means to love these little persons entrusted into our care, about good stewardship and use of resources, etc… And I do that on a small amount of sleep and mostly internally, when processing with others tends to be much more beneficial and productive for me.

We continue to feel grateful to the many of you remembering us in your thoughts and prayers and journeying with us in these uncertain times. At this point we head back to UVA on June 6^th for some follow up appointments. I imagine we will be making more phone calls between now and then, if nothing more than to reassure us that there is nothing more we should/can be doing for Nora at this point.

We will also continue to try to establish routines at home that include fun and lightheartedness for Kali, as hard as it is for Jason and I to muster the energy within ourselves for creative imaginative play. I’ve thought so much this week about how I want our home to be a safe and comfortable environment for Kali to grow up in. It has felt very stress-filled this week and she has responded to that clearly. One night in an all out screaming melt-down packed with emotion she told Jason that we would never be okay again and then later on asked Jason if he was glad that we have Nora. She has also admitted that she thought the nurses were going to take off the cords before sending Nora home. All we can tell her is “so did we” and to try to explain that we are going to be okay, even when Jason and I wonder ourselves.

Janelle

Ps. A few pictures for you: the newest life on our property – baby Phoebe’s on our porch (in honor of our sweet neighbor baby Phoebe, who is Nora’s age and was quite interested this week in checking out her new tubing – see photo); big yawn from Nora and kisses from her big sister

We are home!

Below you will find a short update that my dad sent around last evening. I’m including it particularly for the link to a slide show that gives a sense of our last day at UVA and our return home. It’s Monday morning and I’ll be heading into the office shortly. I will go with butterflies in my stomach for sure. It’s been another pretty rough night and we are eager for Nora to seem more comfortable and content. It is hard to comfort her in the ways that would have been most effective pre-surgery/UVA stay – walking her around a lot is cumbersome with the oxygen cords and nearly impossible during a feed or when being monitored. Having her sit up seems to put a lot of pressure on her belly area which unfortunately seems more sensitive than before. Her g-tube site is still leaking which is just disconcerting, though not increasing in volume so likely not too problematic at this stage. Overnight she needed a higher flow of oxygen which they said might happen, but is also discouraging for Jason and I…

So we carry on but with heavy eyelids and somewhat heavy hearts as well. We may try to lower the volume of her feeds just slightly to try to give her gut a bit of a break. Hopefully Daddy reading stories to her and singing and Kali helping to entertain will get them through the day. Janelle

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Sent: Sunday, May 18, 2008 8:56 PM

Yes, we are home. A part of us remains in Virginia. We wish we could have remained to help in Nora's care.

She is fed by pump infusion at night. During the day she gets gravity bolus feedings plus nurses Janelle. The latter is clearly her favorite and is comforting to her in the midst of her recent trials and tribulations. She is on oxygen all the time as treatment for the pulmonary hypertension. Janelle and Jason are monitoring her oxygen saturation and adjusting the oxygen flow accordingly. I wish the oxygen monitor played classical music rather than a fog horn type sound.

There is much I could say but I enclose some pictures to say most of it. Obviously I continue to enjoy the birds as my distraction. I especially enjoyed good views of Canada and Mourning Warblers. I was tracking down the Mourning Warbler when I encountered the two bear cubs up two trees. I did find the warbler. I had a shocking experience while crossing the electric fence when I decided I better get out of there before facing their mother.

Keep Janelle in your prayers as she returns to work tomorrow. Keep Jason in your prayers as he cares for Nora and Kali. He is doing an amazing job with all the technology that is new to them. Pray for Kali as she tries to be a big sister but can't fully comprehend all that is going on. Pray for Nora that her smiles and coos will return. Apparently the smiles did a bit this afternoon when her daddy was kissing her.

Enjoy the slide show. Herb

http://picasaweb.google.com/hesemyers/May1518VisitToVANoraFamily

Going home soon??

“Working towards getting you home tomorrow morning…” That’s what we are hearing as of this morning. Dare we get our hopes up? And when we do get home, what is home going to feel like? How long will it take until we establish new routines and get adjusted to life connected to oxygen 24/7?

In last two days since I wrote there have been many ups and downs, though most of those ups and downs have not been directly related to Nora’s condition at the time. She has been much more content since the heart catherization – most likely as a direct result of being left alone a greater percentage of her waking hours and being fed consistently! We are also starting to see some emerging patterns in her blood oxygenation levels that will be helpful for us to get to know as we work with her at home. She seems to have a time each evening as she is settling down for the night when she drops and needs a bit more oxygen to keep her saturation levels in the 90’s. But after that brief period she stays high for the remainder of the night and hasn’t been having much trouble during the day. She has done well with the medication and as of this morning is at the target dose that they hope to send her home on. She is doing amazingly well with feeds. Last night she got 30 cc’s (1 ounce) each hour for 10 hours by continuous feed. This is probably more food than Nora has ever consumed in one night. That being said, she still managed, the moment she saw me this morning, to make it seem as if she hadn’t been fed all night until I nursed her.

A quick summary of the “up” moments:

- Mom and Dad Benner’s visit with us: it was special for Kali to have concentrated time with them which I believe all thoroughly enjoyed. Last night Kali, out of the blue, said, “I wish Grandpa and Grampa were my parents.” I could only laugh!

- Yesterday while Jason was cleaning off Nora’s nasal canula she gave him a BIG smile! She has also really enjoyed reading books with us.

- Kali and I’s walk back to Ronald McDonald house together last evening. It felt good to walk hand in hand together chatting about our day, not to mention finally allowing her to talk just as loud as she wanted to!

- Mom and Dad Myers’ safe arrival late last evening – even if I did manage to get them thoroughly lost trying to direct them to the house. I won’t live that one down for quite some time.

- Karen and Sue’s visit last evening, which included the delivery of a yummy meal and wonderful play time and entertainment for Kali!

- Nora not spitting up for close to a week and tolerating her feeds beautifully – she also crested 3 kilos today (so about 6lb 10oz), which is as high as she has been and a good number of ounces higher than she was when she arrived. The GI doctor actually said we shouldn’t expect a lot of weight gain the first several weeks with the G-tube as her body adjusts to the increased feeds. So they seem pleased.

- Jason and I both getting more than 1-2 hours of sleep straight! When I called Jason this morning to check on his night he said he wasn’t sure what he was going to do with all this sleep… That hasn’t felt like a concern to me thus far...

- Nora being able to sit up comfortably again and once again seeing her straining her head to see everything in the room and check out who is coming to get a peek at her next. I’m resigned to the fact that we’ll likely have to wait until we are home to be gifted with her cute cooing again. I miss it!

- Kind nurses, competent doctors and good play areas right on 7^th floor to occupy and entertain Kali.

Some thoughts about the more difficult moments:

Yesterday Dad Benner and I left for Harrisonburg around 4:45am. I was very grateful for a chauffeur! It was the start of the second session of our Summer Peacebuilding Institute and felt like a hard thing to miss and to have someone else fill in for me. So Mom Benner and Kali spent the day together, Jason cared for Nora and got a practice round at bolus feeding for most of the day and I worked for 8 hours by myself with two hands for the first time in months. Sadly, it didn’t feel nearly as wonderful and freeing as I had hoped for. I felt like my two worlds were crashing together every time I looked down and saw my green hospital wrist band, reminding me that I was the mother of a baby in the hospital. I left a lunch meeting early to scurry back to my office and get ready to head to our home to meet our “oxygen suppliers.”

What an overwhelming hour! I got a quick training on the different equipment we will be using and had a few scares too. I’m so very grateful that we tend to love being at home and I think we’ll never be so grateful for the hours Jason has invested into making our home a warm and comfortable place for us to be. We will be spending a lot of time there! We’ll have a certain number of hours a month that we can use our allotment of portable tanks to take Nora out – for walks, to work in our yard/garden, to go to doctor appointments, to go to any social events or church or the homes of friends and family. Otherwise, Nora will be hooked up to tubing connected to an oxygen concentrator with a maximum of 50 feet that we can go in any direction from the machine.

My moment of panic came when the representative from the company mentioned (almost as a side comment) that we need to keep Nora, the connection points in her tubing and the concentrator at least 25 feet from any open flame. When I mentioned that we heat with wood, his replied “Well, it’s good it is summer.” He clearly had no idea that we are looking at this possibly being what Nora needs for life! When I responded that we haven’t been told to expect this to be short term, he suggested that we consider an alternative heat source. Alternative heat source?! This was our idea of an alternative heat source and we love it for so many reasons! It was not the first time I was about to burst into tears and have a tried and true tantrum in front of professionals that are trying to assist us in caring for Nora. Both Mom and Dad Benner did their best to reassure us that we can probably make it still work to heat with wood and that 5 ft might be a more reasonable and safe distance to use as a guide. Regardless, there are so many things we’ll need to think about that we have never had reason to consider. No more candles for gifts please!

Our meeting with the cardiologists yesterday, while sobering on some fronts, also had a bright spot in it. They do not feel like we need to have Nora on the pulse oximeter (monitor) all the time. PHEW! They seemed to agree that it would not be helpful in maintaining our sanity. So as we learn Nora’s patterns we will likely find the times that are most essential to be monitoring her more closely.

I better close for now! Unless you hear otherwise, assume we will be heading home tomorrow in the morning sometime. As an act of faith, we have released our room to others on the waiting list at the Ronald McDonald house. Mom and Dad plan to take Kali back to Harrisonburg tonight to let her get resettled at home. Jason and I will both spend the night here at the hospital so we can be ready to pack up and leave as soon as they will release us in the morning! Today should be fairly routine other than the surgeons coming to take Nora’s stitches out and Jason and I meeting with a different person to get additional oxygen supplies that we’ll need for taking her home.

Thanks to all of you for journeying with us and for thinking of us and praying for us over the last week in particular! We are grateful, Janelle

Things to be thankful for!

Right now I feel badly when we write too often as I don’t want to inundate you all with emails and I feel badly when I don’t write often as I know many of you are wanting to get updates as often as possible. So I’ll just hope we are striking some kind of happy medium (and I also hope that any of you will free to let me know if you would prefer to not be on this list and receiving these regular updates).

I’m going to put this note in the body of the email to make sure it will be a “quick” one. It is a better day today. For that Jason and I are both very grateful. Here are the things that give us a sense of gratefulness today:

1. Nora has been able to eat all day today, for her regular tube feedings and nursing anytime she is hungry. That makes her and us happy.
2. Nora hasn’t been stuck once by a needle all day today and she has made friends with the blood pressure cuff and stethoscope by now so there have been relatively few things to cause her distress.
3. We gave Nora a bath today so she is no longer salty when I kiss her. Her Gtube site is amazingly healed and stitches will come out later this week before we would go home. The only remains of her heart catherization that we can see from the surface is a Tweety Bird bandaid on her left groin.
4. Kali is here with us and making me laugh more than I have for quite some time. She has walked up all 183 stairs to the 7^th floor twice since she joined us. The first time we had to take a break but today she informed me that we could “cancel” our break since she had a bigger dessert at lunch to give her extra energy!
5. Jason and I both got at least one 4 hour block of sleep last night and at least 7 hours total – also a record. And boy does that make a difference in our ability to absorb all the information coming at us.
6. Mom and Dad Benner are here entertaining Kali, feeding all of us and being so supportive just by their presence.
7. We have found good and inexpensive lodging for all of us at the Ronald McDonald House here (not as homelike as Bill and Dottie’s and no one has offered me backrubs there yet BUT a wonderful second option – and Kali is ready to move there as there is an endless supply of toys and books!)
8. Nora’s stats have been stable almost all day today and she is relatively comfortable now with a new and smaller nasal canula.
9. They have started her on a medication for the pulmonary hypertension (and a number of persons have gotten a kick out of knowing that the particular medication that our 6 month old baby daughter is receiving is none other than Viagra).
10. And finally as the pictures will show, Nora is still showing her desire to interact with the world around her and she hasn’t lost her appetite (for blankets or milk!)

What I am realizing about myself is that I can make it through today and definitely the next hour or two. If I focus on the future right in front of me and take this all in in very small increments, I slowly adjust to this new reality. What I do not yet have the strength to do and don’t know even how helpful it would be at this moment in time is to think about a year or even five years from now.

Another piece of all this that continues to baffle me is the amount of resources that our little 6 lb bundle is utilizing. But maybe that challenge and the ethical dilemmas it poses for me should provide the backbone of a later update. Part of the reason this is more at the surface for me today is that one of our home health companies had a representative come to meet with us today regarding the supplies we will be receiving for tube feeding Nora. Jason, out of curiosity, wanted to know how much the little pump that we’ll use at night costs. Maybe I should not have been surprised, but it will be the most expensive thing we have in our home running close to $5000 (and we’ll be given two of them). Additionally our insurance will be billed over $15 daily for the other supplies, including tubing and bags that are all intended for one time use only. Our attempts at having very little trash to take to the county dump will likely be in vain in the coming months/years… But I realize that the only reason that I have the luxury of even asking the questions about use of resources is because we aren’t having to scramble to think about how we are going to pay for all these things – so that should be number 11 above: we are so grateful for good health insurance!

Well, our little one is starting to stir so I better send this off. Jason is out with his dad for his first outing in which I have been left alone with Nora (okay number 12 above: Janelle’s anxiety level is low enough today to be at the hospital alone). Kali is with Mom Benner practicing drawing zebras.

We will continue to be in touch. No projected date or time for discharge yet but you can be assured you will know when we are going home! Janelle

Pulmonary Hypertension...

5:45pm Nora is back on Floor 7 Central in her room number 45. She is out of anesthesia and stable!

Jason is reading Calvin and Hobbes to Kali while laying on a mat here in Nora’s room. Mom Benner is giving the medical report to Dad Myers. Nora is finally resting peacefully after a hard day and I’m trying to gather my thoughts and emotions together to send the news to those of you journeying with us from a distance.

This Thursday Jason and I will commemorate our 9^th wedding anniversary (I say commemorate since we have already mutually decided that we are going to celebrate our 10^th and hopefully will feel more celebratory next year at this time). I mention that because at times like this it becomes even clearer to me how much of a team Jason and I are and how our different gifts (and challenges) come out in this setting. Jason has been at Nora’s side almost 24/7 since we have come to the hospital. He has mastered tube feeding in no time. He also engages the doctors intelligently and asks such good questions – I often look at him after they leave with a look of disbelief and ask him how in the world he knows all of this! For that reason, he will likely take over with this update when we get to that section.

I am all feelings in this place, and today have also felt like I have a water fountain coming out of my eyes at times. I have a hard time absorbing lots of “medicalese” when our baby is crying and crying after not having food for 7 plus hours. When the 20^th person asked if we had any more questions about the heart catherization at about 12:30pm today, when she was supposed to be taken around 10am, I felt like throwing something or running out of the hospital and not stopping for a very very very long time.

It still feels like a bit of a nightmare that I would love to wake up from. When I look at Nora laying on her little bed hooked up to oxygen, monitors, and an IV, it is hard to believe she is the same little one that carted around with me for 2 months to work, free of all those contraptions and relatively content and happy (even on days with multiple meetings and having her naps and playtime disrupted constantly). But this is where this unpredictable journey has led us.

Since we last wrote, Kali has joined us and while this has complicated our life, it has also been a breath of fresh air to have her creative, imaginative, playful spirit in our midst. Without Grandma and Grandpa Benner here (who arrived just hours after my Mom brought Kali to be with us), it would be another story. They have cared for her during most of today and it has been a lifesaver for us and special for Kali. We are so grateful that they were able to come on short notice and that Mom (a physician by training and trade) is here to ask the questions we wouldn’t know to ask. We’ve also been eating much better since they arrived!

Last night when I was getting Kali ready for bed I realized how much our little girl is listening to every word we utter and is absorbing the seriousness of the situation even if I can’t coax words out of her when I want to hear how she is doing. We were cuddling together and I talked with her a little about the day ahead with Nora’s procedure. I told her that Nora might not be happy in the morning since she wouldn’t be able to eat for awhile. Kali quickly added, “She’ll be starving.” Only moments later through tears she said, “She’s going to starve to death.” In my moments of anguish over Nora having to have food withheld from her I have used the term “starve,” not because I think it is an accurate description of what she is experiencing but because it matches more my feelings regarding the situation. Kali’s presence will cause me to pause before uttering the depth of my feelings at times.

For those of you wanting the medical update on Nora you are probably wondering when that is coming. From Jason:

“This is the briefest of medical updates on Nora. More detail can follow or be obtained by simply picking up the phone and calling us, or rather me, since I gravitate towards and retain more easily the medical information and processes. Nora has been diagnosed with pulmonary hypertension, or elevated blood pressure in the lungs. This can be the result of a PDA (a longish story), a mild form of which Nora was known to have prior to this, but which was assumed to have self-corrected. Low oxygen levels in recent days led to a cardiac evaluation, which revealed it had not self-corrected after all. A heart catherization was done today to get more information about relative blood pressures in her heart and lungs, and while they were in there they found it to be worthwhile to fix the PDA. It was assumed that that would help but not solve the problem entirely. They were right. Also while they were in there they released some medications to see if she would respond, to help determine future treatment options. She did, which is good. I could inundate you all with details, but the long and short of it is that she will need oxygen and pulmonary blood pressure meds for some time to come if not for all of her life. She will also be expected to need 1.5 times the calories of a normal person her size so she can grow extra lung capacity. More to come. Gotta go do a feeding.”

Back to Janelle: Some of what is unfolding, while shocking and disheartening and scary, does make sense. There were days that I wondered what Nora could possibly be doing with the milk she was consuming. For 2 months I have tried to feed her around the clock without one gained ounce to show for it. It seems obvious now that her body has been working extra hard!!

The coming days will involve many consultations with doctors to try to determine next steps and the best treatment for Nora. We’ll keep you posted as we are able. Thanks for the emails and calls and expressions of care that many of you have been sending our way. Janelle

Oxygenation levels dropping

This time I’m sending my Daddy’s update around to all of you because I don’t have the time or words to write. Kali needs to get to bed, Nora needs to get fed, we are tired beyond words. At this point home seems like a distant dream…Janelle

"I am sitting at home eagerly awaiting Sarah's return. She took Kali to Charlottesville to be with her family this afternoon and then headed for home. Nora's condition has changed today. Her oxygen levels have declined so that she is on oxygen all the time. Her cardiac ultrasound shows that she has pulmonary hypertension (elevated pressure in the pulmonary arteries). The cause for this is unclear. The duct and opening between chambers in her heart that usually close at birth are still open. This may actually be helping her at this point. Tomorrow she is to have a cardiac catheterization to better define the situation and potentials for treatment. She has been transferred from the pediatric surgery service to the pediatric medical service. She has cardiologists, pulmonologists and hematologists involved in her care. Jason's parents should have arrived by now to be with them. Depending what happens, Sarah and I may go down later in the week. Through tears my mind is spinning. I look at Nora's picture and fill with love. It touches me to know she is comforted mostly by nursing her mommy. Children dying in Myanmar and China - major catastrophes. Our Nora declining in Virginia also feels like a major catastrophe. I cannot begin to put it together. I wonder to God about it and God says, "Unfair" and cries, too. Herb"

A horrible night, what's next...

“Happy” Mother’s Day. I wish that it felt more happy right now. Lots could change between now and the end of the day. And hopefully for the better…

I arrived at the hospital about an hour ago just before 7a.m. after my best night of sleep yet. Jason on the other hand was lucky if he got more than a very few hours of rest. It was a long night for him and for Nora.

When I left last night, I was mostly worried that she would spit up as they upped her feeds over night. The thought I had coming to the hospital was that my sign that it was a “good” night would be if she still had her same onesie on. It was good that Jason called me as I was leaving for the hospital to share the night’s events with me. She was, in fact, in her same onesie and hadn’t spit up at all, tolerating her first 50cc bolus feed at the start of the night just fine.

However, as of midnight they CANCELLED her feeds and she was once again off food until Jason finally pleaded with them just before 5am to get them started again. The scoop is that they were worried that she possibly had aspirated some milk into her lungs in her one and only spit up yesterday around 4pm. The reason for that concern was that she was that her blood oxygenation levels were dropping into the low 80’s when she was resting/sleeping. They had the monitors off her completely until last evening when they couldn’t get a high reading while doing vitals but assumed it was the machines. They got increasingly concerned though after I left (and a new nurse was on that wanted a good read) to the point of taking more drastic measures. She now awaits a chest x-ray to make sure her lungs are clear. She has been listened to by numerous doctors and nurses and her lungs sound perfect to all and no one has noticed any signs of distress. So more than likely this is “normal for Nora” when she sleeps and we just haven’t known that before since, THANKFULLY, we don’t have her on monitors at home. But here they don’t want to take any chances. So we don’t know now if we will go home today and that news is hard to bear!

I just got the official word – not being discharged today. I know in the scheme of things one more day here is not the end of the world. I know on some level that this doesn’t mean some grave set back for Nora. On the other hand, our hopes had been so high and they had been so enthusiastic about how she was doing. It makes me feel crazy inside to think that she is very possibly being needlessly kept here, all because of a small monitor on her big toe! Machines and monitors do not feel like my best friends right now.

This probably gives an impression I’m not intending to give. I don’t want them to let Nora go home if they feel she is in any danger or that she needs to be here for further treatment. It’s more feeling like it is very likely not necessary and she is in no danger at all but is being kept anyway, just to be sure… In the last few days I’ve wondered what it would read if I was on some of these same monitors (I’m sure this thought is making my dad smile, since he thinks I am probably the one needing to be admitted more than Nora…). I wonder how many of us, if hooked up to machines would be kept in hospitals if we had monitors on reading our every breath and heartbeat.

So the journey of the unexpected continues. My worry has turned a lot to our eldest daughter Kali and the thought of extending our separation for another day and of disappointing her that we aren’t coming home today. However, as I started this paragraph Mom called to report that she had talked with Kali about us not getting out of the hospital today. Her response: “I can wait one more day.” And when Mom asked if she would be okay with Grandma being with her until we get home she responded, “That would be fine.” What a grown up girl! I guess we have two troopers in the family! She was up at 5:15am this morning and is now prancing around the house in her Winnie-the-Poo slippers and purple dress with beads, given to her by a CJP student. Mom was able to convince her that a sweatshirt was appropriate attire for this cool morning. We didn’t even give Mom a lesson on starting the woodstove as we weren’t expecting cool temperatures or an extended stay.

10:20a.m. Nora just slept through her 50 cc bolus feeding of breastmilk AND her chest x-ray. She must be tuckered out. She is still resting peacefully for which we are grateful.

Up until yesterday evening Nora had more or less exceeded all medical expectations for how she would be doing post-surgery. She was even given 90cc’s of pedialyte in one shot by mistake. We imagine some resident heard something about that. It was during rounds that I knew something had been ordered off the normal protocol. Dr. McGahren was looking at her chart and all of a sudden got a funny look on his face and said, “Does that say 90?” He made it very clear that they would NEVER give someone that quantity of anything that soon after surgery. We had been surprised too since she has never taken 90 cc’s (3 ounces) of anything at one time in her life. But she handled it beautifully and he commented then that she obviously passed the test. It was because of that “success” that he more quickly moved her to breast milk, so maybe we should be grateful for the error. And it got her good and hydrated, leading to a bunch of soggy diapers in the ensuing hours. Hopefully it also gave her some reserves to help her bounce back from last night.

She was quite eager to nurse this morning and I think it was clear it was needed for comfort and closeness more than anything. I am once again so eager to be able to take care of her at home in a familiar setting to her and us, and to be able to feed her free of cords, IV’s, etc… We hope that time will come tomorrow. Janelle

3:45 p.m. I, Jason will finish up the update with this evening report. Let’s see. Where were we? Ah, yes. Nora was just coming off her second episode of medically recommended starvation. As the day progressed she continued to show me the meaning of hard work and the will to thrive. She has handled every quantity of milk we’ve served her today with nary a gag, though I could tell she really had to concentrate on it. As the day has gone along, she has seemed more and more like herself again. She still isn’t back to the level of vibrancy she had achieved by last evening (kicking legs, etc.), but she managed to utter a noncommittal coo at her little baby board book when I read it to her a few minutes ago. I’m so glad we’ve been able to have at least one of us stay with her around the clock for this hospital stay, because other than that and her toys from home, her life has basically been totally erased and reset within the past four days, from her perspective. She seems to be struggling to make sense of it, but is actually just probably mostly exhausted.

Now the technical pieces. An EKG was performed. Normal. Cardiology doesn’t think they have anything interesting to say about her, but they will do ultrasound imaging of her heart tomorrow (Monday) morning just to rule themselves out. The pulmonary people are not so sure. Based on their observation of her while sleeping (and failing to maintain appropriate oxygen without supplementation), they have a hunch that she has been living with that pattern for quite some time, undiagnosed. They furthermore have a hunch that it has to do with the slightly abnormal formation observed on her NICU MRI scan, in the cerebellum. For medical buffs, this means that the autonomous nervous system may be failing to perform its functions normally, allowing excessively shallow breathing during times of deep sleep. If this is true, little could be done to correct it, but they would feel nearly certain that we could all learn the necessary steps to compensate for it without too much disruption to our equilibrium. We feel less sure than they. They wish to follow up with a sleep study at some point, and feel it is likely they will send us home with orders for oxygen while sleeping and probably oxygen monitoring also while asleep, at least until we could learn her oxygen deficiency patterns (low oxygen over time could damage the heart). All surveyed professionals have declared her lung sounds normal, and the chest x-ray is normal.

Status of feeding program: she tolerated a 60cc feed! But just barely, in my opinion. While I flushed the tube at the end of the feed, she would flinch if I tried a whole cc at once, that’s how full she was. Based on that information and the fact that we’re now going to be here until at least some time tomorrow, they are allowing her to skip a feed, and she and Janelle are doing some breastfeeding instead. Then we’ll do a few 50 cc feeds and see how those go before we try for 60 cc again. Overnight she’ll get continuous flow of 15 cc/hr for 2 hrs, and then if that goes fine bump up to 20 cc/hr for 6 more hours, which is equivalent to the 60 cc feeds in terms of cc/hr overall, but will only require her to absorb 1 cc/3 minutes, since it’s constant. Follow that? Whew. Pay attention in math class, youngins…you may need it.

How are we doing with it all? The prospect of taking medical monitors and oxygen home with us is pushing Janelle to the limits of what she feels she can endure, and I’m getting tired of watching this whole mess do that to her over and over. Last night was horrible for me and Nora, and that is not a self-pitying statement. I kept telling Nora while she protested earnestly that she was one hundred percent right: this was not at all fair. Knowing it was also unnecessary makes my blood boil, but there is no one to accuse, because everyone was acting with compassion and skill and all the kindness they could include. They truly had her best interests in mind…this is, in my mind, the best available care. But that doesn’t mean it’s fair. I try to remember to thank each of the people who work with Nora, especially those who have to do unpleasant things to her. They have no interest in hurting Nora. We’re just pretty upset that we came here to get a g-tube for Nora, simplifying our lives, and now it looks like we’re likely to go home with nighttime oxygen and monitors, complicating our lives.

There is hope that things won’t be so bad, but the lung people don’t put much stock in it: She could still be experiencing residual effects of anesthesia, or she might be so overall beat up and sore and exhausted that as she gains strength the oxygen thing clears up. It is also possible that it could self-correct in the long term, but not especially likely (it’s just as possible it could worsen in the long term). The pulmonary doc was quizzical about our reticence towards the oxygen machinery. Janelle reports wanting to scream, “You think we should think taking our baby home on oxygen and monitors is no big deal?!” She cried instead. If for some reason Nora stops needing sleepytime oxygen before we go home, what a relief that would be.

Optimistic paragraph alert: Overall, this terrible weekend will probably result in improvement in Nora’s health, and for that we must remember to be grateful. She’s really impressing the surgeons with her resilience; her healing seems to be going quite well. Managing the feedings is pretty easy for me, Nora is a champ learning to eat that way. We can give medications and vitamins through the tube now, improving Nora’s quality of life. Nora has actually gained some weight since coming here, which is surprising us and may have to do with I.V. fluids, etc., but is still encouraging. If she has been chronically low in oxygen while sleeping, it’s probably a good thing to catch before it makes problems, despite our being mad about it right now. Everybody has been really kind and dedicated, including our friends and family who are making this work as well as possible (we have to mention specifically Mom Myers who has given the good part of a week to be with Kali in our home which means the world to us – and I imagine our home has not seen such good care in months). Our health insurance is comparatively excellent.

I think that’s all for today. Who knows what tonight will bring?

Waiting on the light, Jason for the Myers-Benner family.