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.

Feeding tube is in!

We won’t start sending updates daily, promise! However I need to write for my own sanity and I know that at least some of you are on pins and needles thinking about how Nora and we are doing. So I’m sharing these reflections for whoever wishes to read them.

It’s about 9am on Friday morning and Nora and Jason are down in radiology for x-rays. Nora was not at all thrilled with the idea of being wheeled out of her room, still with no food in her little belly. They should return soon and we hope that at about that time the doctor’s orders allowing her to have food this morning will have filtered through the complex university system to Nora’s nurse, giving the go ahead to start putting pedialyte through the tube and allowing her to nurse some. We hope “morning” will not mean 11:59am!

I stayed in the room here because I am finding that it is taking some effort to keep my anxiety at bay. We are on Seven Central of the main University Hospital, which is the same floor as the NICU where we spent about 4 weeks after Nora’s birth. I had almost forgotten how my stomach churns with the sound of beeping machines. They continue to monitor her blood oxygenation levels, which involves having something attached to her foot, a screen for me to obsess over and one that beeps when the levels drop to 90 or below. They keep telling us that needing a little oxygen after being under anesthesia is normal, it just doesn’t feel normal and takes me back to our NICU days.

That being said, I have been surprised at how often I’m not feeling like a ball of tension. I give credit in large part to knowing that so many people are sending thoughts and prayers our way – for Nora’s healing and for Jason and I as we journey with her. We are very grateful for that. I also keep reminding myself that we will remember this time well into the future, but Nora will not. We also keep hoping that before long she will be back to her happy self and will start regaining strength and weight!

Last night I savored my first block of sleep of more than 4 hours since Nora was born. I left the hospital around 8pm, having a hard time not feeling guilty leaving Jason there to sleep (or not, depending on how Nora did) on a semi-comfortable recliner chair. It wasn’t too long, however, before I wondered if he hadn’t gotten the better end of the deal. When I got to Bill and Dottie’s, I was received warmly as usual and it wasn’t long before Dottie was giving me a backrub! I started needing tension-relief more as we watched the weather on the TV, only to note that tornado-like weather was moving through. Once again taken back to my childhood days in Mississippi, we were soon on our way to the basement hallway to wait out the storm. Of course I was trying to call Jason (who didn’t answer because he was sleeping oblivious to the brewing storm) and make sure that any precautions were being taken that were needed for those on 7^th floor of the hospital! And I was calling my sister to have them check Harrisonburg weather and to let Mom know if there was anything she and Kali needed to do. Here I was ready for my first night of sleep and I’m separated from all my family and a mess because I’m not such a fan of big storms and like to have “all my people” within eyesight at times like that. Bill’s humor helped, reminding me of my dad, and Dottie’s lap didn’t hurt anything either, which I almost fell asleep on. What a gift they have been to us!!

It ended up passing us by with some rain, lightning and thunder, but I don’t think nearly as impressive as the weather people were predicting… We headed back upstairs and I to bed. I heard from Jason, who in fact knew nothing of the storm and had had close to a 2 hour nap since I had left. It took me awhile to settle but Anne Lamott’s new book quickly got my mind off the weather outdoors and it wasn’t long before my exhaustion took over.

In the end, all 3 of us got decent sleep. I was grateful to know that Nora slept well most of the night, waking and fussing but settling back down with Tylenol. She woke calm for the first time this morning and has had several calm awake moments since (until they start messing with her to take her blood pressure, temperature, check the incision site and then cart her off to be x-rayed).

Jason and Nora are back from getting x-rays done. She is tuckered out once again and didn’t enjoy being laid on a hard board with her arms placed in different positions in a chilly room. Her temperature has been a little low but they keep unwrapping her. It is probably nothing some warm milk and some clothes wouldn’t remedy, and they don’t seem concerned by it (so I’m trying to take my cues from them – and Jason, who I’m once again relying on for steadiness).

Hopefully all the tests are done for the day. The nurse just brought pedialyte in with bottles to start her – how come orders don’t get communicated well??? First of all, she doesn’t take a bottle. Second, they had clearly said since yesterday that they would start it through the tube and let her nurse. So now she is off to clarify “orders…”

Our day will likely include some teaching with using the button and tube, lots of information to absorb, getting feedings started and seeing how she does with that, and likely numerous staff visitors who either need information from us or have some piece of information for us.

And that will be interspersed with frequent calls to check on our eldest daughter, who by all accounts so far is enjoying immensely having Grandma all to herself! She even got to hold Grandma’s arm to fall asleep and it sounds like about crowded Grandma out of bed last night. Thankfully the worst of the storms at home came after she had fallen asleep.

I’ve been thinking of storms a lot lately, on a lot of different levels. As we weather this new storm in our family’s journey, I can’t help but realize how we journey in relative comfort! We have all our basic needs met (Nora might argue about that right now, but before too long we will be able to respond to all her needs) and we have persons available to assist us if needs arise. As much as I can vent/complain about our immersion into the UVA system, I can’t say how many times we are told to be in touch if we need anything, and I truly believe they would do all they could to meet our needs. As I left last night, I was reassured to see the nurse bringing Jason blankets and offering him coffee or whatever else she would do to make him comfortable. As news of the incredible ongoing devastation caused by the cyclone in Myanmar/Burma filters to us from our many colleagues there, I can’t help but have a different perspective on our current situation. Sometimes it can be so easy for me to focus solely on our “daily survival” through these times, not realizing how even in the amidst of what we would consider our family’s most challenging times to date we are gifted and privileged in ways that we should not take for granted.

I better close for now. I was hoping to include a feeding report in this update but I think it will need to wait for the next one. I’ve filled my “self-imposed” quota of space for any one update, Janelle

Surgery over

The surgery is over and Nora seems to be doing well, according to her doctors. Her parents assume the doctors are right, and are trying to suppress their parental instincts to feed their very hungry child.

Nora is sleeping peacefully here in her hospital room. It’s about 2:15; she came out of surgery several hours ago. It’s hard to imagine she can sleep with nothing in her belly for almost 11 hours now, but she is also pretty worn out, I am sure. During the times she’s been awake since having the surgery, she has grabbed anything within reach and crammed it in her mouth. Poor baby! She’ll probably get something in her belly again starting tomorrow morning. Who knows what kind of night we’ll have? Janelle is actually going to go to Bill and Dottie Scott’s place to sleep tonight, since it’s been many months since she’s had a decent night’s sleep, she’s still trying to recover from whatever bug was ailing her and Nora’s not allowed to nurse until morning anyway.

We are surviving this, of course, and we “know” it’s for the better. But Janelle especially is bothered by feelings of anxiety in the hospital setting and has a hard time with Nora’s distress, not to mention the false alarms of the oxygen monitor. I’m glad she’s going to sleep elsewhere tonight. They say these operations are usually a lot harder on the parents than the kids, and I can see how that is true. But at least the parents get to eat.

She’s now awake and so obviously hungry it could break your heart. It’s hard to remember to believe that it’s better for her not to eat yet. Fortunately, so far she hasn’t gotten hysterical with hunger (the dextrose in the I.V. is probably helping a little with the blood sugar portion of that equation), and kind treatment (starvation notwithstanding) and singing seem to be able to bring her comfort. I hope she can sleep as much as possible until morning.

We are so grateful knowing that Kali is having a fabulous time with her Grandma Myers at our place in Keezletown. We are eager to bring Nora home from the hospital to her—again—with hope in hand for some healthy growth for Nora.

All for now, Jason

p.s. below is a short email written to family earlier in the day...

---

Sent: Thursday, May 08, 2008 10:42 AM
Subject: blow by blow

A quick email to you all family. We are sitting in the surgical waiting room and I’m trying to pass this time so I’m emailing you all. I don’t have a lot of news to report other than that all 3 of us survived the 6 hours from 3:30am until 9:30am during which time Nora couldn’t eat. She was pretty unhappy when they took her to the OR, but it could have been worse. Lots of crying and munching on her little hand, but also some playing and sleeping as well. I about fainted after they put the IV in, but thankfully they didn’t have to wheel me off… A few bright spots included the surprise at seeing one of our NICU nurses who was called to put her IV in. It was reassuring to see a familiar face. We are also waiting here with a college friend, Matt Goins, and his wife Katie (who has surgery today too).

I thought of my daddy when they took Nora from my arms and I couldn’t keep the tears at bay. I remember him telling me that he cried when they took me for my eye surgery when I was just two! I know, in a new way, how it feels… She was a trooper though. Her little hospital gown was ridiculously big so we just wrapped her in a blanket. She then was eating the gown with colored doggies on it!

We have received a call saying that she is doing well under anesthesia and surgery is underway. We’ll do our best to be in touch again later today.

Dr. Braddock has already visited us here in the waiting room. He had Nora’s skin biopsy secured in his pocket and wanted to see how we were doing. He continues to be very kind. For those that don’t know, his abstract regarding Nora for an international conference in August has been approved. He’ll be making a large poster on Nora and another case and since it will be a powerpoint he will be able to share with us what he is sharing with colleagues. He also was very happy to agree to my request to include at least one “normal” picture of Nora with her family (or at least Kali). Okay, better shut down for now. Waiting, waiting…Janelle

SHE ROLLED OVER!!!!

Today is Sunday, May 04, 2008 and a milestone day for our little Nora (still teetering under 6.5 pounds). Today, while her daddy was taking a shower, but in the presence of her mommy, big sister, neighbor and friend Margaret, and Aunt Emily she ROLLED OVER! It’s something I’ve never seen before. I’ve seen babies roll over many times. But I’ve never seen a baby smaller than Kali was when she was born roll over. She’s been working on it the last number of days when we’ve done tummy time. And today she did it like a pro. I think she surprised herself though when all of a sudden she was looking up at the ceiling fan. We were proud of her!

It was good to have a bright moment interjected into a pretty anxious time as we await surgery this coming Thursday. And it came off a rough week for me as I’ve been battling either the effects of sheer exhaustion or a bug I picked up somewhere along the way. I had two days of chills, aches, fever, and a headache. Those symptoms, minus the headache, have subsided but I’m now enduring a very sore throat. Nora and Jason are spared thus far, for which I’m grateful. Kali has some kind of cold but seems to be on the mend as well. I hope that we are all at our best (health-wise) come Thursday morning!

My mom will join us Wednesday and will be with Kali while we are at UVA (for which we are VERY grateful and relieved!). We will leave early Thursday morning for the hospital where we will be for about 4 days, if all goes well. The 6 hours prior to surgery will be trying at best as Nora cannot nurse at all during that time, because of the possible risks then associated with anesthesia. Surgery will be about one hour and then the recovery process begins. We will appreciate your thoughts and prayers as we embark on this new and scary journey. We are told that babies normally do quite well with this surgery and they have no reason to expect anything different in Nora’s case. We hope they are right. We’ll be in touch after surgery.

Tomorrow is a big day for my work as our annual Summer Peacebuilding Institute starts. It is an exciting time of year as we welcome about 200 persons from about 50 countries over the course of the summer. I will be working most closely with those students taking courses for graduate credit as part of our MA or Certificate program. It’s a time when I once again feel torn between parts of my life that I care deeply about. It will be a different kind of year for me with family life in such a time of learning and transition. I continue to feel grateful for the support I receive from my work and the patience of my colleagues with my ever shifting schedule. Janelle