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
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! 
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!
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