Privacy Curtain

I’m hoping life will soon slow down enough that daily updates won’t seem necessary. It feels good to write that we continue to have a happy baby on our hands!! She even cooed and smil­ed for one of the nurses today. As of this morning she has been relieved the burden of at least 5 cords and 5 sticky circles all over her chest that have bothered her for the last number of days. They are also only checking her blood pressure every 4 hours instead of 1. They are ready to release us to the main floor as soon as there is a bed available. Right now there are children who have been in the Emergency Room for 2 days waiting for a bed and about 5 other ICU patients waiting to be transferred to the main floor. So we aren’t packing our bags yet and honestly aren’t all that anxious to go. It is likely we’ll be moved to a double room and are hoping beyond all hope that we aren’t paired with someone who enjoys having the TV on for constant entertainment. But it’s probably a waste of time and energy to worry about that at this moment. Nora and I are enjoying peace and quiet at the moment while Jason enjoys a rare bathroom break and a walk down to the ground floor and back up for a quick spurt of exercise.

Jason and I both got a little more sleep last night on our small single mattress window seat here in Nora’s room. It was interrupted with a few rough spells, including her first good throw up in weeks. Of course I was ready to curse Neosure which had been added to my milk for the first time that evening. It’s not that my milk has been all that successful in making Nora grow, but it was harder for me than I anticipated when we started the continuous flow of fortified milk into her g-tube last evening. I guess my quest for purity in parenting has long ago been diverted to a different, more human and flawed path, but it was just another moment of feeling my inability to meet Nora’s needs without medical help or in this case Similac. As it turns out, Nora is probably not overly bothered by the fortified milk (4 oz of breast milk to ½ scoop of Neosure formula) and was most likely prompted to spit up by stuffing her blanket in her mouth. Regardless we wondered if we were headed for another set back, particularly when I picked her up and was quite sure she felt fevered (turned out to not be higher than 100.3 which no one was overly impressed or bothered by).

Since that time she has been more or less content, until right now when they loudly announce over the intercom right here in her room that respiratory is needed somewhere in the hospital, waking her from a very peaceful nap. So many things about this setting either want to make us scream, cry or in some moments laugh because we are tired of crying or trying not to scream. The poem below was commissioned by me and written by Jason this morning about one such thing. Sometimes it’s the little things…

Privacy Curtain

There it goes again.
The baby is sleeping! What
can the builders of this room have
been thinking?
Nurses knock lightly, open
the door gingerly,
JERK OPEN that curtain
(the baby startles, settles)
tiptoe over, whisper
softly, do their job with
utmost deftness, slip
away,
JERK CLOSED that curtain
(the baby startles, looks around)
ease the door into place, and
leave.

On another note we have really come to appreciate Dr. Noreen Crain (her grandmother’s name was Nora), who is a palliative care and pediatric ICU specialist, and who is currently the main doctor charged with maintaining the synthesized, big picture perspective on Nora at UVA. A conversation last evening was especially helpful in simplifying the picture for us to the degree possible. But more than that, we felt she understood and cared for our family. Another poem by Jason:

Last Light of the Day

We are talking about our
daughter’s life; her
potentials. We are
three people who care, standing
around her crib, by this seventh
floor window. There
is nothing good about the overzealous
constriction of lung blood
vessels. But her doctor
came and spoke with
us, gently, assuming
nothing but our competence. She
couldn’t tell us all that we would
wish to know. But her
careful answers, kind, were
an illumination. The long,
low rays of amber
evening light shone through
my wife’s hair, refracted
in the doctor’s glasses, softened the
lab coat’s whiteness. It
will be easier now to
wait for the first light of
morning.

It seems that there are so many different lenses through which we can view this whole experience. I made two collages of pictures today that I think show the contrast (see attached). There is the whole array of monitors, medical equipment, lack of color and beauty and freshness. Then there is Nora and her intense desire to interact with those things and people familiar to her, and to figure out the things not so familiar (like how she might dismantle her I.V. arrangement with her little mouth).

As we think about Nora and her future, we can do the same thing. If we look at the very short term Nora is improving – there is no doubt about it. She is happier, her saturations level are high, she is tolerating feeds, she is smiling and cooing and interacting in pleasant ways. When we look at the long term there is really nothing but a lot of questions, only a few of which I’ve listed here:

Will Nora’s set of challenges conflict in such a way that she will be unable to thrive?

Can we limit fluid to combat pulmonary edema and heighten calories to promote growth successfully?

Will her pulmonary hypertension be treatable or will it significantly shorten her life?

What will her childhood be like if she is granted the chance to experience it (not to mention adulthood)?

Our conversation with Dr. Crain was helpful and also sobering in some ways. We talked with her more in general about what life is like for children with pulmonary hypertension. She shared that they tend to be self-chosen couch potatoes in many ways – they just don’t feel good when they are active. With treatment they can attend school and walk around the house, but don’t choose to do much more than that. I’ve found myself already wondering what things will bring Nora life and energy and passion. If I have a guess, I’m thinking books will be high on the list. The nurse who cared for her during a meeting we had today said she was very intent on being the one to turn the pages while she read her little board books. It is clear she wants to experience life, and Jason and I are committed to giving her a good chance at experiencing it to its fullest, whatever “fullest” means for her.

I think that’s enough for today. My turn for a much needed bathroom break (and maybe the luxury of a hospital shower…) Janelle