Back to UVA once again

We're spending this rainy afternoon trying to make space for our heads to stop spinning from the morning’s appointments at UVA. It’s not that anybody said anything surprising at the appointments; it’s just that they are always an ordeal.

There were 3 appointments: one with the pediatric G.I. specialist, one with the pediatric surgeon, and one with an x-ray machine.

The G.I. specialist confirmed the consensus that has been building, namely that although no one can guarantee improved growth with a feeding tube they could at least be assured that adequate nutrition is available to her. We were more or less satisfied with their explanations as to why the feeding tube usually works and why complications are likely to be minimal. As such, we really need to give it a try, and it is their best recommendation at this point. He seemed kind and competent.

The surgeon went over the procedure with us and it sounds pretty straightforward, except that she has exceptionally thin skin (“not robust”, he put it), which could complicate healing, but didn’t seem prohibitive to him. Also very kind and competent.

Last was the upper G.I. imaging appointment, for which Nora’s milk intake had to be cut off for a period of time prior (making especially the last of the first two appointments rather harrying). She finally gave in to sleep and awoke in the waiting room before the upper G.I. Surprisingly she was quite pleasant until once again stripped and put in multiple uncomfortable positions. The poor little girl had to drink barium while strapped to a table with her arms above her head (making hand chewing, a favorite pastime, especially when famished, impossible) and then pose for pictures of her guts. All told, it reassured the professionals that her anatomy will support a feeding tube, while confirming everything she already believed about bottles.

Nora is scheduled for surgery to implant the gastrostomy tube in about 2 weeks, on Thursday May 8^th. She’ll have to spend about 4 days in the hospital. There is a certain comfort in knowing the next step. Now we can plan for something. It’s too early to know whether or not the uncertainty we’ve been living through will be alleviated in the time following the surgery, but we hope that at least our schedule (including sleep schedule) will be normalized somewhat. Dr. Braddock, the geneticist, continues to try to dig up information and photographs for us to use to be able to become acquainted with our daughter’s probable physical future, for which we are grateful. He remains in touch with us consistently, including stopping in to see us two times today during our other appointments, even though we had no scheduled time with him.

To help give you a visual picture of our morning, imagine two adults walking into the halls of the UVA hospital complex with apprehensive looks on their faces, one carrying a scrawny but alert baby, and the other with three overstuffed black bags over his shoulder (badly in need of a donkey). Then picture the two trying to comfort a teary, hungry, exhausted baby while she’s being poked and prodded and procedured, while simultaneously attempting to converse intelligently with the doctors and remember all the questions they came with. Lastly, picture the trio exiting the structure and heading toward the parking garage. The faces of the adults show exhaustion, but relief. The appointments are over, and the baby has been fed. They are headed home.

Thanks to our friend and neighbor Kristin, Kali enjoyed her morning unreservedly (and we enjoyed fresh cookies when we arrived home!). Thanks for caring, Jason

Baby-care and work combined

An update has been brewing in me for some time but I feel like I’ve hardly had a chance to catch my breath over the last month, let alone sit and write with two hands. It is a rare moment, where Nora is asleep in the middle of the day in her co-sleeper and Kali has just fallen asleep on the recliner in the front room. Therefore, I have two hands free and can focus on writing to all of you (in between worrying just a bit that Kali is coming down with something since she NEVER takes naps anymore).

It’s been a busy day around here, with more activity than we have seen in months. A group of persons from our church community came out for several hours to help sort and load junk from our construction project onto trailers and a pick up to head to the dump. We have wanted to get our property more ready for outdoor play and it will feel so good to have more of the safety hazards cleaned up. But even more than getting a lot of work done, it felt wonderful to have members of our community at our place and in our home. Nora seemed less bothered by the activity than some times and was even quite engaged being held by Ed Yoder, a good friend from our church. We enjoyed lunch together, much of which I can also not take credit for. We are so eager for the day when our family is at a place where we regain the energy to start giving back. We have gotten so much practice being on the receiving end of help and while we continue to very much feel the need for it, we look forward to the day when we find ourselves at a different juncture in the journey.

This update comes sandwiched between two appointments. Yesterday we were at Nora’s pediatrician for her 6 month checkup – including one vaccine and her last Synegis shot. The doctor noted that she really seems to like being 6lb 9oz (which she has been for about 3 appointments now – spanning close to 1.5-2 months). He also noted that her skull bone continues to grow slowly and her umbilical hernia seems to be lessening. The quote we took away from the appointment was him noting that, after checking these two things, “her pieces are coming together nicely.”

Since we head to UVA again on Monday, he didn’t need to respond much to her lack of growth – knowing we would be addressing many of the questions swirling around that issue soon. We’ll head out early Monday morning, leaving Kali to play with neighbors and good friends (Kristin and baby Phoebe, who seems increasingly entertained by Kali’s presence). We meet with a pediatric gastroenterologist at 9:30am, followed by a pediatric surgeon at 10:30 and an 11:30am appointment to have an upper GI done. All three appointments are to help us assess if the next best step for Nora is a feeding tube.

Both Jason and I feel apprehension about a pending surgery on Nora’s little body. We also feel like we are not sure we can keep going indefinitely as is, if growth is essential (as it seems it is) and all my efforts are merely aiding in her maintaining weight. Maybe it is better to say that we are not sure I can keep going as is. I’ve had Nora with me pretty much 24/7 for the last month plus and I have reached a new level of exhaustion, at home and at work.

It’s hard to say this (knowing that a number of CJP folks have requested to receive these updates), but I’ve had a hard time lately not wishing very much for a job flipping hamburgers or something that I could care less about. Up until this point I’ve had very few moments feeling anything but awe in the fact that I have a job that seems to fit me so well and that I love and feel so deeply committed to. However, getting to a place with our family where I feel so needed on so many fronts and feel like I’m now trying to balance a job that I care deeply about and a family that I care deeply about, I feel torn in ways that at times feels almost unbearable. It doesn’t help of course that I’m right in the middle of one of my busiest work times of the year, second only to new student orientation in the fall. Next Sunday is graduation and we’ll be graduating and saying goodbye to over 25 CJP students. A week after that we welcome to campus persons from countries all around the world who will be taking part in our Summer Peacebuilding Institute. It is an exciting time of year and exhausting, and this year I find myself just wanting to make it through, to not let people down, and to make it a bearable time for both of our girls.

Nora has actually done incredibly well being carted to and fro for meetings and being fed while I try to type and do work with the free arm. We only had one mutual meltdown this week when she clearly wanted ALL my attention and that collided with a moment in which I had about ½ dozen projects started that I desperately wanted to get done before the end of the day (to avoid coming on in the weekend – which did not happen).

For the most part, though, she seems to have adjusted well to my office. She even has her favorite bulletin board that she coos at consistently whenever I go by. And she has become much more talkative. She is much more expressive with us – both regarding her likes and dislikes.

As Nora approaches the milestone of her 6 month birthday, I’ve found myself experiencing sadness more than anything else. I wish that I was someone who didn’t struggle with dwelling on what could have been, but many days I can’t help but wonder what life would be like for our family right now with a “normal” baby. If every waking hour (and most hours at night) were not consumed for me with getting a few more cc’s of breastmilk in Nora with the hope that maybe, just maybe, she would gain an ounce and keep it on. If days weren’t full of trying to arrange and rearrange doctor appointments and making decisions we feel incapable of making because we don’t know enough about Nora and her condition (like the feeding tube).

One of the things I’ve found myself reflecting on over the last number of weeks is about how instinctual it is in us as human parents that our responsibility is to help our offspring to grow, and how difficult it is to not feel a very deep sense of failure when you are unable to make that happen. Kali grew by leaps and bounds as a baby and I never once doubted my ability to make her grow. I doubted my abilities in other areas of parenting, but for some reason this one seems to run deep and at the very core. Every time someone asks me how old our baby is, I feel like I have to add some kind of disclaimer before saying she is almost 6 months old.

And then I find myself wondering how I’ve gotten trapped into another set of norms that have been established by our culture and context – developmental milestones, what a baby should look like, what her relationship with Kali should be like. I’ve always been a sucker for “shoulds” and I feel like I’ve fallen captive to a whole new set of them. What I wish for myself is that I could come to a place of being able to fully embrace Nora and each baby step she takes. Most days I feel like I could get there, if only the feeding and growth issues could be sorted out to a point where we know we are doing all we can do to maximize her potential and are assured by someone with some level of expertise (who is that?) that we can relax a bit!

This week Kali was playing school with Jason and she wanted to play “hope management class school.” When asked how you play that she informed Jason that is it is the kind of school where you tell the teachers your wishes and the teacher teaches you how to make them come true. How I’d like to enroll in such a class!!

Well, my time with both hands and undivided attention is long gone. Kali is still sound asleep but I have a cooing wiggling baby on my lap. It is probably time to wrap this up, knowing that you’ll likely have a follow up update from us sometime in the next week after our UVA adventures.

Janelle (for the rest of the family)

Headed for a feeding tube...

We last sent out a communication to you all after having just gotten the news that Nora does fit in to a genetic category after all (at least probably), although it is a rather extremely obscure one. Since that time we have continued to try to keep up with the daily needs of our family and work while coming to terms with the implications of Nora’s designation.

It cannot be said with certainty what we can expect out of Nora’s future, though the rough idea seems to be that she’s likely to develop normal mental capacity and normal motor function, and have no particularly abnormal health problems. However, it is probably inevitable (with current medical capabilities) that she will live her life without the benefit of body fat; she will also present with various other physical anomalies including bizarre hair and possibly tooth patterns, shortish stature and very slight frame, lack of normal fingernails and toenails, and wrinkled skin. Possibly there will be more that either I’m not remembering or of which we have not yet become aware.

Implications? There is considerable relief in being able to seriously hope that we will be able to have an intellectually deep and satisfying relationship with Nora. Of course we are now more than ever before sensitized to the fact that many parents need to find fulfilling ways to interact with their children when that kind of connection is not as possible…we admire those relationships and value the contribution they make to our understanding of the human condition and experience. It is still possible that Nora’s condition holds jarring surprises for us, and we remain aware of that. But so far the expected results of this condition are being borne out each day in Nora’s development and behavior. That is to say that her mind seems to be active and curious and pleasant. Whereas her body seems to be, while not suffering in any obvious way, totally neglecting to follow the normal developmental trajectory (except that motor development is pretty well normal).

She still has not hit 7 pounds, and she is now just over 5 months old. One of the other cases of Nora’s syndrome was first seen at 18 months of age, at which time she demonstrated normal cognitive and motor development while being at a weight ordinarily expected for a child of 4 months of age. Nora seems on track to hit that same mark pretty closely.

Right now she has basically plateaued on weight for a couple of weeks, and had been growing extremely slowly before that as well. Her doctors are getting pretty uneasy with that, as are we. She seems to have insufficient eating capacity to move forward in her growth. They do not seem to think there is an imminent threat to her cognitive development, but we do need to keep her growing for many reasons related to her general health. Janelle has been bending over backward 24/7 to get milk in her (while also trying to work her normal schedule), but our best estimates indicate that she’s getting less milk by mouth than she needs available to her to reach her body’s best potential.

So it seems quite likely that we’re headed for a stomach tube. That’s a supposedly surprisingly noninvasive apparatus that allows us to bypass the oral route when we feel more milk is needed than she can take in on her own. It would especially be used during sleep times with milk being introduced over several hours (by mechanical pump) to avoid overfilling. No use pumping it in only to have her spit it up.

We feel pretty ready to accept that this is a necessary step and are even feeling like there would be some pressure taken off of Janelle to convince Nora to eat enough if we could cheat a little. But for Nora’s sake (we couldn’t “stomach” installing a tube if it was possible to get the milk to her naturally) and for the sake of caution we have purposely drug our feet some, so that we could make sure we had exhausted every possibility before resorting to the apparatus. We still have some genuine reservations. Complications from the tube are supposedly rare and mild, but we’ve got a rare girl, so it’s not as safe a bet as usual. Also, there’s a chance that it won’t help to give her more milk. She may already be taking all she can process according to her genetic potential. In the womb she showed no signs of distress related to placental function, so all the indications are that she had access to perfect nutrition then and still ended up half the size that would be expected. But it seems like we have to try. It would be too sad to know she could have grown better and we didn’t do all we could to help her.

The evaluation that will probably be the last step before scheduling a stomach tube installation will likely take place within the week. It could have happened today except for some logistical snaffoos, but it may be a good thing it didn’t, since Nora spent today getting over her first cold. We had a long night last night but she didn’t get a high fever, and the fever stage hasn’t lasted too long…we’ll see about the secretion stage. We had to spend our morning with the pediatrician so he could be satisfied that she wasn’t melting away. Kali got drug along, of course, but showed her true colors all morning; she cooperated very well and was not inappropriate or disruptive. For a high-energy 4 ½ year-old, we think that’s pretty impressive (and unexpected given her recent, understandable tendency towards attention-getting).

We don’t know if this tube is it, but our family is really ready for a change in the right direction. This has been a long row to hoe…it feels like it keeps getting longer and we can never get near the end. We remain so thankful for the kind words (not to mention food) we keep receiving from many of you. It really helps.

Love, Jason for the Myers-Benners