Returning to UVA for appointments

We are home! We are tired!! It seems a little hard to believe that it was just yesterday that we packed up and headed over the mountain to UVA (a scheduled appointment) for the first time since bringing Nora home in late November. A number of times on the trip, I commented to Jason that I was glad we hadn’t tried to travel at Christmas and that I think it will be quite some time before I choose to travel any significant distance as a family. It was complicated. First of all it felt like we had enough stuff with us that we should have been going somewhere for a week – cloth diapering does that to us. Secondly, Nora really is not on much of a schedule except that she does seem to be starting to tank up on milk and clear out her bladder and bowels during the day. That meant that we had to stop two times on what should be an hour long trip to feed her and change her diaper. She also seems to be getting used to having parents that respond to her needs, when expressed, quickly. She wasn’t so impressed that the laws regarding car seats kept us from responding immediately. We were grateful for the unseasonably warm weather which made it possible to stop along the road for “emergency” baby care. We were grateful to arrive safe at Bill and Dottie Scott’s around 5pm. They once again received us warmly and opened their home to all four of us this time. Nora took awhile to settle in the evening but then did one of her first 5-6 hours of sleep without eating. I am quite sure that Jason and I could get used to that!

Today was exhausting and emotionally draining. We didn’t go into the appointments with many expectations and once again there is no grave news to report. There is actually some good news. She has crossed another milestone – 6lbs! And the microarray analysis results are in – normal! The geneticist said that he continues to feel that her package of symptoms has some genetic cause, but he is not able to pinpoint what that is. However, he feels that time is on our side because she is doing well and continues to develop. What he feels most right now is that our diagnosis may be that Nora is Nora.

For me the appointment with neurosurgery was more unsettling. The appointment was primarily to look at her skull bone, or at least what there is of if, in her case. While we feel that some mineralization has occurred since birth, she clearly is still lacking in the brain protection department. That is not the primary concern at this point since she is not mobile yet and not in much danger of head injury. The one concern at this point is that two of the plates on the side may have fused prematurely. If that is the case it can cause problems as the brain grows. Therefore the neurosurgeon really wants a CT scan done in the next month to check that. IF they have fused, he may recommend surgery to separate them. I think it was the word surgery, which we heard a number of times, that really got me. I think I’m just not ready for a re-hospitalization, for watching Nora suffer again, for having other people being her primary care givers, for feeling scared and out of control and unable to make things better for her…

Some days it would be so easy to just think we have a baby, a normal healthy tiny baby. She really has had so few issues. She is not on any medication. She has not needed any additional doctor appointments for anything since we brought her home (other than her weight checks). She is feeding by mouth and getting better at it and wanting to do it more often (like right now as I’m trying to quickly finish this update!!). She lets us know when she needs something. She pees and poops regularly enough to make us wash diapers almost daily now. She is smiling at us and the ceiling fans and her red stripe on the cloth by the changing table. She makes noise other than cries – expressions of excitement or contentment. She’s even growing out of some of her preemie clothes.

Then, on a day like today, it feels like we have anything but a healthy, normal baby. We enter the medical world where Nora is a mystery. We get a list of appointments for the future and see our schedules involuntarily rearranged to accommodate them.

I’ve reflected a lot in the past number of weeks about our lives being composed of many individual moments – little snapshots put together to create the tapestry of our lives. I’ve tried to give myself the freedom to enjoy some of those moments, even while wishing that this stage in our family’s life looked very different from what it is. Sometimes it is hard for me to allow myself to feel happy, for fear I’ll somehow then not be able to handle the hard moments. Today I felt like what I need for myself is to somehow get to the place of accepting that the next few years are going to hold a lot of hard moments and a whole lot of uncertainty for us. If I can come to at least accept that reality and not have every new hard turn throw me off balance once again, maybe I can free up some space to enjoy the beautiful moments that will come and allow myself to be surprised by them when they do come – like just moments ago when I was frantically trying to type this letter before bedtime with Nora in my arms (which slows me down considerably) when I look down and catch a big smile.

Nora isn’t smiling right now, however, so I think my time is about up. Daddy is pacifying her for me, but I’m not sure she would feel like sending you all this update was a good enough excuse to delay responding!

We continue to feel grateful for the support that we have felt from many of you. Till next time (which will likely come after her next appointment with her pediatrician on the 15^th when she gets her next RSV shot and her very first vaccination.) Janelle