PVL

Tuesday, August 25. Jenny's sister Becky arrived today and drove straight to the hospital, but when I got there during my lunch break, they were out. I went from Stella's room to Luna's room to Stella's room to Luna's room. Once you're done worrying about one for half an hour, you suddenly realize, you want to go worry about the other one. After Jenny and Becky showed up, I talked with them briefly and asked about the damn ultrasound again. No news, not yet. So I decided to head back to work. I made it down the elevator and off and towards the "Savory Fare Cafe" when Jenny called me on my cell and said the doctors wanted to talk to me and Jenny; they had analyzed the second ultrasound. I turned, went back up the elevator, clipped on my SCN (Special Care Nursery) badge and went through the whole scrub at the sink routine. (You have to wash your hands for a while.) I was so nervous I splashed the blood red soap all over my shirt. To hell with it. I didn't care about the stain.

We met in Luna's room. Becky was with us. I pointed out the slop on my shirt and tried to act cool, but I was anxious. "Well, I don't have terrible news," Dr. Keene said. And she looked at me, right at me, with her head lowered. "But it is a mixed bag." Why I have such an impression of the way she lowered her head and looked at from the tops of her eyes, I don't know. This I will remember. (She has been excellent, no criticisms really, just impressions.)

Here's the deal -- the initial bleeding has not spread or worsened. The ventricles remain the same size. Good news. I could feel palpable relaxation of my spine. But then there's this. The scan revealed more bleeding, in another part of Luna's brain. More bleeding? Jenny latched on to that. Okay, not more bleeding, necessarily, could be something called "PVL," or "white matter." It's a small amount, very small amount. Around the area of her brain responsible for walking, for her legs and feet. The doc described it as scar tissue...

Trying to assess the news, take it all in. We'll have to wait another interminable week for another follow-up ultrasound. If this PVL expands, we'd could be in for quite another situation. If it doesn't, we'll be relieved. At worse, the doc says, Luna may have some trouble learning to walk; or her risk of learning disabilities increases. But here's the rub-- some kids, even with the minor bleeds or PVL, do develop larger problems. Not all of them, not most of them, but some do.