Going home tomorrow!!!

I (Jason) am writing this update letter today in the hopes that we will not have enough time tomorrow to write anything to anybody. That’s sort of a back-door way of saying that, if all goes as we expect it to, they plan on DISCHARGING NORA TOMORROW!

For those of you who have not been on our daily/frequent update list, I’ll run down the events of the past week very briefly:

Nora has done very well this week. She was weaned out of her isolette (incubator) with no problems, and except for the stressful effects of a neuroopthalmic exam (basically normal result), has been a pretty boring patient. This is a good thing. The morning after the eye exam day we wanted to have the nurse re-position the feeding tube, but she proposed pulling it out and having us put in a new one so we would know how to, since they planned on sending us home with one. We agreed, but Janelle requested to be allowed to breastfeed her, just this once, without the tube before it went back in. The nurse liked that idea, and so did Nora, we soon found out, because she did a good long feeding. We were impressed. Janelle asked the doctors if we could try breastfeeding on demand that day just to see what would happen. They liked the idea, and, to everyone’s delight, so did Nora! That night they wanted to let her rest, so she got the tube back in overnight, but we were permitted to try it for 24 hours starting the following morning. That 24 hours has now stretched into 72 and counting, and because she didn’t lose much weight in the transition and because by last evening she was up to her maximum weight again and presumably climbing, no one has looked back. To facilitate this trial, we have been permitted to stay in one of the rooms in the NICU usually reserved for parents of babies who are going home in one or two days (it looks like we’ll have been allowed here four days by the time this is over), which has made a huge difference in our ability to parent Nora as we would hope to: lots of cuddle time, attentiveness around the clock, and a less distracting and nerve-jangling environment. The doctors want one more evening weigh-in to reassure them before letting her out of their sight, but everyone is assuming we will drive her home to Keezletown tomorrow before noon! They would have sent us home tomorrow anyway, probably, because she’s been doing perfectly with her temperatures, heart rate, breathing, and blood oxygen saturations. The difference is that we will not have to mess with feeding her through a nasogastric tube…a huge relief!

Nora is now up to 1855 grams, which is a little over 4 lbs. 1 oz. She is getting better all the time at breast and bottle feeding, having fully discovered her appetite! To ensure her maintaining her glycogen (metabolic energy source) reserves, we need to be sure to feed her at least every three hours, unless she voluntarily wakes up earlier than that, in which case bump the schedule forward accordingly. She still seems to need a lot of sleep (like any newborn, I suppose), so frequently we need to wake her to feed. Janelle is trying, in fact, to feed a sleepy baby as I write. Often I find her behavior laughable at those times (except when I can hardly get my eyes open), because even though it was our idea to wake her for meal time, she usually seems to feel as if the waiters at this restaurant have absolutely no respect for a girl’s appetite and usually is complaining loudly and demanding to see the manager by the time we get her temperature taken and diaper changed! Seeing her relishing the milk from bottle and breast reaffirms something I have long felt: food tastes better when you work for it!

The long and the short of it is this: we can see evidence that there is something about Nora’s genetic makeup that causes her body to differ from the average. The UVA folks are doing their best to figure out what category that might fall into, but have no guarantees for us. However, as the geneticist said to us on Wednesday, it looks like time is on our side, because whatever it is, it is so far not keeping her from thriving in her own way, at least for now. She is stable, happy, and growing. There are even a growing number of moments throughout these days where I find myself really enjoying having a new baby and delighting in her little features and expressions (especially that drugged look babies get when they have a belly full of milk). Of course we’re exhausted from frequent feedings, but when I take a step back from the efforts of the moment, there is a sense of relief and gratefulness building, because we should be exhausted: we are the parents of a newborn. The gift of these past few days is that we’re finally able to start feeling like it. Jason

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Jason is taking his turn at attempting to feed Nora “hind milk” (the creamier more nutrient dense milk that a mother produces after a baby has been sucking for awhile) from a bottle but I’m not sure he is being much more successful than I was. When she wants to eat she REALLY wants to eat and when we are trying to put her on a schedule and feed her according to that, she sometimes REALLY wants to sleep and no prodding, tickling, coaxing, manually opening her mouth will make her start sucking. I’m so eager for the day when her growth and weight are adequate enough to allow us to just follow her cues and not force eating at times when she is uninterested. And, of course, since so much weighs on her continuing to put on additional grams, it is hard for me to not feel pretty uptight when she is unenthusiastic. It has been such a relief and so wonderful to be with her and to interact with her without that feeding tube – we all are so much happier and that is one reason we are working so hard to keep it out for good.

Tomorrow will no doubt feel like a day we have waited for for a long time. It will be just under 4 weeks since we left home to come to UVA for the induction. While we are so eager to start establishing our routines and rhythms together at home, there are also some feelings of anxiety as we anticipate this big change. It has been wonderful to be with her around the clock here and away from the monitors that were our cues of her health before. Now we look at her color and watch her chest rise and fall to check breathing.

The other big thing for Jason and I regarding tomorrow is being reunited with Kali who has been with my parents this week. She has been battling a nasty cough and fever for most of the week. She seems to be on the mend now and her sickness didn’t keep her from having a wonderful week with Grandma and Grandpa. It has been a challenge to get off the phone with her the last number of times as she seems very eager to talk and talk with Mommy and Daddy. She has been such an amazing little girl throughout this time, but clearly is missing us and her home and normal routine. I’m not sure what normal will be for us in the future, but I’m pretty eager to get tanked up again on Kali hugs and kisses!

Well, Nora is sleeping so we better attempt to at least rest. We continue to feel so grateful for the showers of support and love we have felt over the last number of weeks. While the journey has felt difficult and the days long, we are not sure what we would have done without many of you: the emails, the phone calls, the visits, the food deliveries, the prayers, the hand-me-down clothes. And while many of you don’t know them, we will feel forever indebted to Bill and Dottie Scott who opened their home to us the past 4 weeks. They not only provided a bedroom/bathroom for us, but they fed us, let us do laundry at their home, taught us a new game, listened to us, helped with our transportation needs, and befriended Kali and provided a wonderful place for her to play. While I’m not eager to stay in Charlottesville, I will admit feeling a little sappy as I left their home after picking up the last of our things today.

There is no doubt the journey of parenting Nora is just beginning for us. There will be follow up appointments here at UVA. There will be decisions to make. There will be healing and processing to do as we continue to adapt our dreams for ourselves and for Nora as we get to know her better.

In the interest of not overloading all of you with information/emails, this will be the last update of this kind that we write and send to this large of a list. We will no doubt occasionally write some of our thoughts down in the coming weeks/months and are happy to continue sharing those with any of you that are interested in receiving them. Please let us know if you want to continue receiving updates from us (and are not already on our “frequent update list.”)

Sincerely, Janelle

Our 4lb baby all to ourselves!!

What an odd feeling! We have our baby all to ourselves! Nora was just wheeled from her little cubicle in Pod D of the NICU to the “rooming in” suite where Jason and I will be staying with her tonight – and potentially the next several nights until discharge. She has a nurse assigned to her but she won’t bother us or her much except to come evaluate her briefly and of course if her monitor alarms go off. She is still hooked up to monitors BUT we were able to get them to turn off the monitor screen in our room so that we cannot see what is going on. It will be good practice for going home when we will (as with Kali four years ago) have to check that she is breathing by looking at HER rather than a screen!

The last two days I’ve sent short emails to our family and I’m copying them at the end of this for those of you that want a little background on the last few days and what has transpired to bring us to the point of having Nora in a room with us for an overnight stay. So far today is going well – she has had two good breastfeeding sessions out of two tries and will hopefully soon be getting hungry for a third. The feeding tube had to be put in briefly overnight when she wasn’t able to take her whole feeding with the bottle. However, they removed it first thing this morning and all of us are much happier when it is out. She rests better and I rest better.

The plan is, as of now, that we will be discharged most likely on Sunday of this weekend if all goes well in the next few days. She does need to prove with outputs in her diapers and by gaining weight that she is getting enough from me. We have to go with those clues now since we can’t watch how many cc’s of milk are going in through the tube. She was down about 10 grams last evening to 1845 grams but the nurse on was actually very happy with that and thought that she was actually doing great for her very first day of trying to work for all her food. And work she did – work we all did. I feel really tired but less anxious. Overwhelmed by the task ahead but much more ready to work hard at breastfeeding with her than with tube feedings. And she seems to do a little better and get a little stronger each day.

We had a long consultation again today with Dr. Braddock, the geneticist. We cannot complain at all about the amount of time he is giving to us and his patience with answering any questions we have. He continues to feel that the DNA bloodwork he recommended to us would be helpful in trying to determine what is causing the variety of things going on with Nora. We just gave them the go ahead to do that today and Nora just survived having about 5 cc’s of blood drawn and is sacked out again. He would also like to continue to follow up with us in the future, even if a clear diagnosis at this stage of her life is not reached.

He was clear that the only thing that we might end up with at the end of this is to say that “Nora is Nora.” He is also not recommending we do every new test that comes down the pike. He hopes to help us figure out what is going on solely so that we can parent Nora in the best way possible and know how to care for special needs she may have and also to give a sense as to whether it is likely to happen in future pregnancies for our daughters down the road.

It seems that in the coming days, weeks and months, Jason and I will be faced with a lot of questions about how far to go down the road of testing and attempting to put the “Nora puzzle” together. At this point in our journey, I feel the need to focus as much of my attention and energy as possible on learning how to mother her. For right now that means working on feeding, holding, burping, cuddling, loving, and getting to know some of her cues. That might mean something really different down the road.

Speaking of mothering, it is getting to be time for a temperature check, diaper change and another session of feeding (that is after Jason gets done photographing her!!).

Until next time, Janelle

Monday, November 19

Hi Family, I thought I would send just our family a quick update today.

First the good news - as of this morning Nora is OVER 4 lbs. She is now 1840 grams which is just about 4 lb 1 oz. It felt like a milestone for sure. For some reason, today has been a more emotional day again for me - maybe not having my 4 year old diversion around to help me (Kali is with my parents for the week and having a wonderful time. Of course she about made me melt last night when she told me over the phone, "I wish I could give you a hug."). Today has just had some ups and downs:

She has a new nurse once again which always takes me some time to get used to. We left at the 12pm feeding because she was really sleepy and I needed to get out of the hospital so Jason and I went for a walk. When we came back I laid down and Jason went in to her. He came out to let me know that they had done the eye exam while we were gone (which apparently is not pleasant) and she was pretty wiped out. They also noticed a bit of blood in her tube which concerned them. So she had an x-ray which was fine but they are guessing that the feeding tube which needs to be changed was probably irritating some spot in her belly. She is still refluxing some too but not nearly as much. Anyway, her breathing and her blood oxygenation is really altered this afternoon but when we just talked with two nurses they said that the eye exam totally wipes babies out for the rest of the day. By the way, the eye exam was normal... I hate that she has to go through all of this - and that we are not there with her (not that I would be much help at all!).

So it's obviously not a productive bottle/breastfeeding day. She is sacked out in Jason's arms right now. I will go back in before too long to learn to put the tube in. They are going to put an even skinnier one in which is supposedly easier. We'll see. I hope that she is more alert tomorrow and we can pick back up on feeding. She did breastfeed some at the 9am this morning. Love you all! Janelle

Tuesday, November 20th

Good morning family, Jason is about to hand me a little one to see if she wants to nurse again. He just changed a third poopie diaper of the morning - feeling a bit like Kali days. It seems like today is off to a different start from yesterday. We both will likely be with Nora all day as we are attempting nursing on demand. That's right - the feeding tube is currently out. It will likely go in again later today, but for now we are enjoying seeing her little face free of tape and tube.

She was at 1855 grams this morning (up 15 grams from yesterday to about 4lb 1.5oz). We were happy with this as yesterday was a tough one. She did not spit up overnight and when possible they used just the hind milk (fuller in fat) that I had pumped before leaving.

This morning before rounds we had the nurse take the feeding tube out since we were concerned it was in too deep. She then agreed to leave it out while I breastfed. They came around on rounds when I was burping her. We mentioned wishing we could just leave it out and try nursing on demand for the day - they agreed! So we are trying it. She has nursed really well several times and it now actually protesting a little with daddy as I think she would be interested in continuing but the nurse would like her to get some rest before the next feeding time. So we'll see what the day brings. It is kind of odd how much my anxiety goes down without that tube in her nose. She also seems to breastfeed better as well. We are not too hopeful that it will be able to stay out but it is hard to not wish for that. There are no tests planned for today unless they do blood work but we are still trying to figure out some insurance questions before we let them draw more blood. She seems to have recovered mostly from her eye exam with her heartrate down, breathing more regular and deep and her blood oxygenation more stable. So it also helps that her machines aren't beeping too much. Well, I better go. We love you all and will keep you updated as things progress. Love, Janelle

46 "normal" chromosomes

It has been about a week since some of you have heard from us! From the emails I’m getting, I’m gathering that it is about time for a more formal update from us to all of you that have been journeying with us over the last number of weeks. Just so you all know, we are sending more regular updates every few days to our family and those of you that have requested to receive them. Feel free to email me if you want to be on that list. Otherwise, we’ll try to do an update every week or so with the highlights. There are also some new pictures online at http://picasaweb.google.com/hesemyers under Nora Lynne Myers and some under Janelle’s Nikon 950 pictures if you scroll down to the very bottom. Now for a bit of an update on how all members of our family are doing.

Nora continues to remain a mystery to many in the medical community here. As of today we learned that all 3 variations of the karyotype (looking at her chromosomes) testing they did have come back normal – she has 46, she is a girl, there are no additions or deletions or variations at the ends of the chromosomes. So they can rule out a whole host of possible problems. The geneticist is recommending another round of blood work to do a chromosome microarray analysis, which is a comparative DNA study. This morning when I talked with Dr. Braddock (the geneticist), it felt like we were at least on the same page with our motivation for finding out what is causing some of Nora’s various issues. Neither Jason or I have a desire to go on a bunch of different rabbit trails of testing merely to get a label for Nora. However, if we can get an understanding of the root cause of some the things they see in her, it may help us both have a better understanding of what to expect in the coming years and may also give us clues of how we can best parent and care for her. However, we are very aware at this point that the most likely scenario is that we will be discharged before we know much more than we do right now.

Yes, they are starting to talk about discharging us. As of this morning it sounds like the week after Thanksgiving is the most likely scenario. Unless she begins feeding a lot better by bottle or breast, Jason and I will be trained to feed her via her little feeding tube. The main goals in the coming week or so are to continue to practice eating by mouth and to wean her off of her isolete (warmed box that has her little bed in it). She is moving in the right direction with both. She has been spitting up much, much less, which has lowered my anxiety being here, and has also started to put together that Mommy = food. She has started doing that very familiar rooting around and even gets good and feisty when food doesn’t come fast enough. Those are all welcome signs. We’re also starting to discover positions that she really likes and each little moment in which we feel like we figure out one of her clues helps establish a bit more of connection between us and this little one.

Her weight as of this morning is 1770 grams, up 40 from yesterday. She has been up and down with her weight but the overall trajectory is moving steadily up. In pounds, she is now 3 lb and 14.5 ounces. It feels like 4lbs will feel like quite a milestone and we are eager to celebrate that day which is hopefully coming soon. They have said often that around 4lbs babies are better able to regulate their temperatures, which is one of the main hurdles to going home.

Much of the other testing they have done has come back normal. Her vitals remain very steady in room air. Her MRI showed nothing of great concern. She is getting regular visits from occupational and physical therapists, which I have to admit at times feels just a bit overboard. She gets examined and poked several times a day and normally passes all physical exams with flying colors. She just needs to get a lot more padding all over her. I think both Jason and I are getting a little more confident holding her and moving her around but it is still by no means comfortable all the time. It has gotten easier the fewer wires and tubes and cords she has coming off of parts of her body. She only has her little feeding tube and then monitors on at this point. She is much happier with her little arms free to bat around at things, and that sometimes involves pulling at her feeding tube which we try to discourage!

Now for the rest of the family! Kali through us a curve ball this week when she woke up Monday morning with a drippy nose. So much for our plans to spend more time together at the hospital. Jason and I have spent this week tag teaming all our parenting. He is with Kali in the mornings and I in the afternoons and I’m with Nora in the mornings and Jason with her in the afternoons. I am glad to have focused time with both our daughters, but I miss having time all together as a family and being able to process more of this with Jason. I feel like we make a good team, but we enjoy being a team in the same geographic location. Kali is on the mend though and hopefully will soon be able to come see her sister again. Her cold has made us all more cautious when in the NICU and so Jason and I have been wearing masks with holding Nora – unpleasant but it is not worth the risk of her catching something right now.

Jason and I continue to ride the waves of this journey. I’m grateful we are journeying together in this. Jason, so far, has been much more of the steady one from day to day. This past week has provided some relief for me as I’ve had more breaks from the NICU environment. I also got my running shoes on for the first time since going on bed rest and have gotten in two invigorating walks in the cool November air. That, along with conversations with friends, family and others, has been healing for me. I have a track record of not being so gentle with myself, and have many reminding me that I don’t need to like the situation in which we are finding ourselves and that it is okay and quite normal to be struggling to feel the same connection with Nora that I did with Kali at this stage. I’m grateful for all of you surrounding us, supporting us, loving us and giving us a much needed different perspective from time to time.

Well, it is 1pm so it is time to head back and let Jason get ready for the afternoon shift. Blessings to each of you. Hopefully the next time one of us writes, we’ll have a clear plan for when our family gets to move back over the mountain. It’s hard to imagine that day, but we are all looking forward to it so much. Love, Janelle

Kali's sick, life's complicated

I think this will be a short update since there is not a whole lot to convey today. This is, I keep reminding myself, a good thing. Regarding Nora herself, the news is all neutral or good. After having lost weight two days straight (30 grams Sunday, 5 grams Monday), she’s up 60 grams today. An ounce is 30 grams. I think that puts her at around 3 lbs. 13 ounces, but I’m not sure. They think that around 4 pounds is when she may start to regulate her temperature dependably and maybe move to a crib. Once that happens, they will possibly become bolder about trying to wean her off the feeding tube.

So there are two big questions on our minds regarding Nora’s care. One is the big mystery question that is still not answered, and the other is, ‘When can she go home with us?’

As far as the mystery is concerned, they are still waiting for definitive lab results, but have so far ruled out everything it is in their power to rule out. That is to say, she had a basically normal brain MRI, a normal preliminary karyotype, and no other definitive findings by dermatology, neurology, etc. I expect the genetic tests UVA can do will yield no definitive results. There is apparently a lab in Rhode Island that my dear Mom has made contact with which may be interested in running their tests on Nora, but that is pending UVA exhausting their ideas.

Assuming test results that do not indicate an immediate health crisis for Nora, the questions yet to be resolved before we go home with her are more pragmatic in nature: can she eat by herself, can she maintain temperature, is she gaining weight, etc. We had hoped that perhaps Rockingham Memorial Hospital in Harrisonburg would be willing to admit her as a patient so that we could move this routine home, but that seems unlikely at this point. Nora’s doctor here called RMH, and they feel very tentative about having her there, because she’s such an unusual case. If she were a recovering preemie, it would be different. He said that he’d hate to send her there if they are tentative, because they might get scared about something and rush her off to UVA for no reason. I appreciated his logic. So chances are we’ll go straight from here to home. We may have to finish up the tube feeding weaning at home, but we’re sure hoping not. In any case, once we get home I’m sure we’ll be better off, but it may just be the beginning in terms of testing, if they can’t get this girl figured out while we’re here. Nora’s doctor assured us that they would do their best to bundle the appointments so that we wouldn’t have quite as many trips to make.

All of that feels pretty far in the future right now, even though it may be as little as a week away. We’re currently just trying to make this routine work, and be the best parents we can be to both of our children. Janelle continues to feel pretty taxed by this experience. It hasn’t helped that today Kali has come down with an illness. Whether it’s a viral illness (cold, etc.) or the manifestations of what looks to me to be an infected finger from getting it stuck in the car door the other day is hard to say. Janelle has her at a doctor’s office here in Charlottesville right now and I am eager to hear what they have to say about it. If Kali is sick, she can’t visit. If we are sick our visitation is also limited though not always totally denied. How to balance the benefits of the presence of parents with the risks of infection for such a vulnerable little one? We’ll have to look to the health care providers here for help in navigating this one. So far I feel fine, but Janelle is not sure if she’s caught it yet or not. Of course every twinge and drip that would ordinarily pass without notice seems to carry tremendous significance now, and for good reason.

We thank you all for your steady, constant support. It has made a tremendous difference to us. Jason

Wednesday, November 14, 2007

It’s now Wednesday around 11:20am and I (Janelle) have just stepped out of the NICU for a quick break before heading back in for the noon feeding. After not being here for about a day and a half, I came back in for the morning shift today. I spent yesterday mothering Kali who tends to be more of a mommy’s girl when she is not feeling herself. The doctor didn’t seem overly concerned about her finger or her cold at this point so we are to just wait it out and try to make her as comfy as possible and try to keep ourselves from getting it and passing it to Nora. It has complicated our lives even more as we try to figure out our schedule keeping Kali away from the hospital and other children until she at least isn’t fevered anymore.

She seems to feel, according to Jason’s report, much perkier today so hopefully it is moving out of her system. It sounded like she was enjoying a fun morning of outdoor playing and exploring with Daddy – probably good for both of them.

Nora woke up soon after I arrived this morning and was good and alert for her first feeding of the day. She did a good job breastfeeding before getting her tube feeding of fortified breast milk. When I left she had so far kept all of her breakfast in her belly. Her spitting up seems to be happening a bit less frequently and if that continues, my anxiety will likely diminish some as well. Yesterday evening she successfully took about 15 cc’s from the bottle for Jason which is the largest amount yet. That is about half of her feeding so we still have a little ways to go.

This morning her weight was down 5 grams (1/6 of an ounce). While it would be easy to feel discouraged, it was probably too much to hope for a big jump two days in a row. She has about 4 ounces to go before hitting the monumental 4 lbs.

This morning Dr. Kauffman mentioned their hope to get the final test results today and he also mentioned working towards getting us home next week. Nothing is definitive yet and while I’m so eager to be home again, caring for a 4lb little one on our own also feels a bit daunting right now, especially if we are still needing to do tube feedings at that time. It continues to feel like the best policy to try to take things one day at a time as much as possible!

Thanks to all of you for your support, thoughts and prayers. I am not sure how we would be making it without all those surrounding us. And I am quite convinced I would not be making it all without Jason’s steady and optimistic presence and Kali’s hugs and kisses and her enthusiastic “I love you Mommy.” It is hard to face feeling many times every day that I’m not able to mother either of my children the way I would like to right now. I feel uprooted and without control over so much right now. I’m working at finding the things that I am able to have some control over and am also taking the advice and encouragement of many to attempt to be more gentle with myself and to find ways to work on my own healing and processing of the happening of the last two weeks since Nora was born, the time preceding that and some of my fears for the future. It is quite clear that the journey is just beginning.

Thanks for the ways that each of you are present to us right now. Love, Janelle

Mommy on the brink!

November 9, 2007 (written mostly on Thursday, November 8^th)

Dear Caring Community,

I am sitting here in the lobby of the NICU, writing to you while I have a little time with absolutely no potential for parenting, and therefore can concentrate on writing. Janelle is at Dottie and Bill Scott’s place (our temporary home base) with Kali, and I am here on NICU duty, but they’ve got Nora down in the MRI room right now, so I am here doing some more waiting.

I’m not totally sure why they are doing the MRI…it seems to be a “just in case it might turn up some useful information” kind of thing. Maybe just in case her spitting up might be more than normal baby-with-full-bellyness, maybe just in case it might provide a clue as to why her head is normal-baby size when she’s half normal-baby weight? She continues apace, acting in every way so far like a normal baby who just needs to grow, and who happens to have some probably minor abnormalities. And she is growing. In fact, she’s growing more or less precisely the way the doctors might have expected (not that their expectations have been all that precise).

What all the doctors and other prognosticators who have examined this baby can agree on is this: she is a puzzle, and not just a little bit of one. Fortunately, so far she has not developed into a puzzle that needs immediate and drastic solving. She’s been actually very steady, and doing everything basically appropriately for her size, if not gestational age. She needs a lot of sleep, but gets mad when disturbed. She gets tired out by trying to nurse, but she is capable of the correct motions and does them at the right times. When she’s awake and alert, she opens her eyes, turns her head, and takes a basic interest in sounds and sights in her environment. All bodily functions seem appropriate. Furthermore, the more weight she gains, the more like a normal baby she looks. She is still scrawny without a doubt, but her ribcage is filling in a little, I think her little bottom is getting fatter, and her face look just like…well…a baby’s. All over her body the wrinkles are beginning to subside.

Janelle’s biggest concern has been that each time Janelle has been there for a feeding, Nora has refluxed a small portion of the milk they give her through the feeding tube. Of all the people who have a stake in those events, the person who seems most concerned about them is Janelle, and the person who seems least concerned is Nora. The nurse wishes she wouldn’t, because she’s concerned about her aspirating some milk, but otherwise doesn’t seem too flapped by it. The doctors are not panicked about a few ccs of milk per feeding. I could go through a whole list of possible reasons she’s doing this, including proportional stomach size, sphincter energy level, sensitivity to motion, etc., but in my mind the most likely explanation seems to be that she spits up after she eats. But seriously, though, it does seem related to stomach capacity and motion, and the goal is just for the nurses to learn her groove.

The more significant factor associated with this phenomenon is its effect on the patient’s mother. Janelle’s beat. She’s been operating on too little sleep and too little to do but worry. The NICU environment could hardly be less friendly to Janelle’s personality, but she has endured it for a week now in the interest of being a diligent mother and attempting to increase breastfeeding. It was the spitting up that finally pushed her to a recognition that the current situation was not going to work. It’s painful to see her so stressed, but I’m glad we’re going to be dividing the NICU parenting up a little. I am not nearly so rumpled by all the false alarms, crying babies, and medical machinery (at least not yet), and I have a basically positive intuition about this baby, whereas Janelle’s (possibly influenced by exhaustion and cabin fever) has been a little more morose for the past two days or so.

Baby stats and events:

Heart rate: nothing to report

Breathing: nothing to report

Blood pressure: nothing to report

Weight: up 45 grams (1.5 ounces) from yesterday

MRI results: pending (but neurology has examined her again today and says they will stop by this afternoon.

Genetic blood tests: pending

Cuteness factor: up 5 points since yesterday

Thanks for your interest! Love, Jason

P.S. Dottie and Bill have been so good to us. It was definitely the right choice to accept their offer of hospitality to us, rather than bunking at the local Ronald McDonald house. Kali is enjoying their preschool very much and we are all enjoying their kind and generous spirits in a diversity of ways both emotional and practical.

First day in the NICU

I’m sitting here in the NICU with Jason rocking Nora by my side. She seems to be very happy in his arms and has been sleeping contentedly ever since her Aunt Sue was here to hold and interact with her. We have been spending a lot more time by her side in the last 24 hours since she has not needed as many tests, pokes and prods and for that reason and maybe others she is much more content and enjoys being held and cuddled. We are enjoying hearing her cry less and seeing her interact a bit more with her surroundings in her awake/alert times.

We hope that we are striking a balance between overloading you with information and updates and not leaving you in limbo for too long. Now that we have started sending these updates to a broad list, we don’t want to drop people at our discretion. So, that being said, PLEASE let us know if you would rather not continue receiving our rather frequent and often lengthy updates. We promise to not be offended at all. You can also just not tell us and delete them if that feels more comfortable!!

Last evening I ended my evening reading an update my dad wrote about Nora and then watching a little video that Aunt Anna Benner created after visiting and taking pictures and some video footage. It doesn’t take much these days anyway to bring the tears but they came afresh and in abundance. But they weren’t all sad tears this time. They were tears of amazement at how much love is being shown to our family during this time. And how clearly this little girl has already made her mark on this earth – as one friend shared in an email, there is no doubt that little Nora “will not die an unlived life.”

If any of you would like to see pictures of Nora Lynne or the little video, I’m including three links below.

http://bennerfam.ning.com/

http://www.youtube.com/watch?v=NH9TlZeoNIg

http://picasaweb.google.com/hesemyers

I’m also including the two poems written by my Dad:

“The first was written on September 23^rd after I finished reading ‘The No. 1 Ladies Detective Agency’ by Alexander McCall Smith. This was a passage from the book that made me think of Janelle and Drimpy (nickname given to Nora by her big sister Kali early in Janelle’s pregnancy): ‘She was crying; for her own child, too – remembering the minute hand that had grasped her own, so briefly, while it tried to hold on to a strange world that was slipping away so quickly.’

Our Drimpy

So small
And staying smaller
Than she should be

Our love
Growing
And wondering

Will it be
A hello
And a goodbye

Will we have time
To nurture
And cherish

I pray for the grace
To value her life
Whether

Imperfect or
Whole

I love you
Squirmy
Drimpy
Grandpa

And on October 14:

Drimpy, Who Are You?

Drimpy, I wonder
Do I know you
So many details
Fingers and toes
Hiccoughs

Pictures galore
Yet, who are you
So small
A person I believe
But what personality

Will you enjoy life
Even if small
Will you laugh
And cry

We want to get to know you
Please, give us a chance
Grandpa”

In the last 24 hours, Jason and I have felt glimmers of hopefulness. We sometimes feel fearful of those feelings, worried that it is the “calm before the storm” or that if we celebrate the little successes we will have farther to fall during the hard times that are yet to come. However, I’ve decided that this is where having hope comes in and believing in this little girl, who has already shown us that she is not going to give up very easily. She has a bit of a reputation in the NICU for not enjoying being messed with and also for having the strongest grip of any baby around (that she received when they were trying to straighten her little hand to get an IV in…).

For those that want a quick medical update, I’ll try to be concise. As of this morning we still have no blood work results for which we are waiting anxiously. And we really have no more clear answers on what caused many of the things that Jason mentioned in his email. However, none of those things seem to be causing her distress at this point. She is still receiving some oxygen to keep her blood oxygenation levels up, but they are hopeful that this won’t be necessary over the long run. Yesterday she had a central IV placed so that they do not have to continue to replace her IV as her little veins were only standing an IV for about 14 hours. We were happy about this, as it means a less invasive needle in her arm, less sticks and more mobility for her hands which she likes. It also makes holding her easier! Her bilirubin level had gone up a bit yesterday and so they decided to start photo therapy which just means that she lays under bright lights with a little mask over her eyes. However, some jaundice is really common in babies and her levels were not dangerously high at all (Kali’s were much higher after birth), so they are still letting us hold her out from the lights as much as we want. The level was down some this morning so likely she won’t have to continue it after today.

So here are a few of the good things that have made us feel really hopeful, and can’t help but make us feel pretty attached to this little girl. Today she has latched on several times and gotten just a bit of her nourishment straight from me! While pumping and feeding her breastmilk through her tube is satisfactory for now, we are so happy to see her doing the sucking, rooting actions more consistently. AND she has turned the corner and is gaining a little weight. It is common for newborns to drop weight over the first few days before they level off and start to move back up. We are happy to see her doing this early on and as they increase the amount of milk she gets we hope that continues and grows exponentially! And last, but not least, we’ve had some really special content awake times where she looks at us and listens and engages with us. While I know that babies don’t really smile at this age when they feel happy, she has at least gifted us with some good and adorable smile reflexes and I’m sure she won’t mind if we attach some meaning to them for her!

Well, she is starting to grunt in Jason’s arms and it is getting close to another feeding time for her. I better get back to the work of mothering here and finish this update up for now. I know that I’m getting to the bottom of the third page and I feel like I’ve hardly started. Let me end by sharing a poem that Jason wrote this morning – a poem written to prepare for a new day and a poem written in hope for the future:

Watching your little
bones fill in with
flesh is like watching

A butterfly on a
twig, fresh from the
cocoon fill its
wings with blood, bright
patterns unfurling in the
sun. The difference is

You are my butterfly, and
I could watch
you
all
day
long.

Jason laughed when I wanted to add the phrase at the end, “if only I could keep my eyes open.” We are tired but thankful for the wonderful care we are receiving from nurses and doctors here at UVA and the wonderful emails that are flooding in to make us feel connected to our community even when we are physically absent.

As you remember us in the coming days, the big transition to come soon is that we transition to a home in the community tonight and will begin the commute to and from the hospital. Kali will be joining us in Charlottesville tomorrow evening. We are very much looking forward to having her with us, even though it will make our days more logistically complicated. Jason and I have both felt a bit like we are operating in two families of three (our “Kali, Jason, Janelle” family and our “Nora, Jason, Janelle” family). We are eager to have time now to start figuring out our “Nora, Kali, Jason, Janelle” family. We are so grateful that she has had a special week with her Aunt Karen and Aunt Sue and then with my folks in Pennsylvania. She still won’t admit to missing me very much!!

Blessings to each of you, Janelle