Sept. 5

It was a good week for us, despite some mixed and once again ominous news about Luna.

The news, as usual, was double edged -- sharp good, sharp bad. The bleeding in her brain had not increased. The PVL matter had not grown in size. In fact, according to the doctor, it was less severe than they had earlier thought.

This is actually stunningly good news. If the bleed had increased, it would have meant some frightening surgery on the brain for our little Luna. Shunting -- essentially, inserting a device into her brain to drain the blood. Would it mean the end of her life? No. Would it mean a change in the quality of her life? Likely. Few kids come out of it without drastic differences in their physical condition. Mentally? Hard to say.

That was the good part. The bad part? There was some anatomical concerns, namely the size of these ventricles. They had increased in size, although only slightly. The doctor said it was a "minimal increase," and she told us how she had looked at the scans "twenty" times before she could reasonably conclude there was a difference in size.

Immediately I had this image of her and the other docs crouched around the monitor, peering into the grainy, blurry black and white images of my daughter's brain. The cutaway view, the various zones, the formations, the cavities, the masses. Did they have a tape measure or something? No I suppose there was some kind of tool in the software that allowed them to measure it on the screen.

We felt all right about it. I wish I'd felt better. Shouldn't I have felt better? Not sure. As soon as the news was out, something in me turned off for a few days. We'd have to wait for the next sonogram to see if the ventricles, again, had changed in size. That looms for Labor Day, two days from now.

So I would enjoy the week, which I did. I postponed any fatalistic worry, and I think Jenny did, too; the girls had a great week, a very stable week. A week of no bad news. It felt good, very good. We still feel like we're on the edge of a cliff, of course. But we're holding on.

Stella and Luna both went on a "nasal canula" for spells, and they both began to put on weight. Now they wouldn't keep on the canula for a while -- a device which all but lets them breathe on their own -- and the weight varied. But that was all right. No calamaties, no awful news. Each good day, we celebrated quietly. They are getting stronger, we tell ourselves. Friday=week 30 of a normal 40 week gestation. Today, their 18th day of life.

One nurse spoke to this afternoon and said, 'Boy, these girls have been there. They've been through it.'

Have they? Or has it only begun? I keep thinking of another nurse's comments...'This is a hellish nightmare. You may need help. No parent comes through this experience okay.' She said it was usually one step forward, two steps...or eight steps back...What a cliche. But damn it, was that true?

I think I can do this, though.

They have begun to change in appearance, ever so slightly. They're still mushed and wrinkled, gray and diminished, small. Their heads, small enough to fit inside the palm of my hand easily, are misshappen (although covered in fine brow hair). But they are more filled out, less withered and dried. They seem on the verge of getting fat on their cheeks.

I walked in one night and Stella was getting a bath. The nurse had taken off most of the leads and stripped her naked and was sloshing her back and arms and legs with a sponge. I had just come in at the right time. I had my Flip handheld camera, and I immediately started recording her, arms outstretched, legs splayed. She cried -- the volume surprised me -- terrific bursts.

I keep thinking about the cyst in her lungs, but why? She doesn't seem bothered by it. Her lungs seem to be working.

The very shape of their rib cage is clearly visible through their skin. The ribs look painful. Their bellies, distended and laced with veins, flex in and out in spasms with each breath. Sometimes, their faces scrunch in what seems like agony.

Are they feeling? Are they in pain, ever? Yes, they are. I have tickled their toes and heard them cry.

Another night, I come in, and Luna's getting a bath. They're holding her over a tub and dousing her hair with a rag, and she's crying, too. The nurse asks me if I want to help but I'm still afraid I'm sick, which I'm not.

Something about the bath gives us comfort, makes us feel that our kids our normal. Of course they're not. They're small, and they're on the edge of death every hour. But you have to take what you can get.

We will enjoy the good days and figure out some way to get through the bad ones....So few bad ones this week, though. So far!

They have the most nimble, delicate fingers imaginable. Stella's toes and fingers are exceptionally long. Tiny, yes, but unbelievably refined. The hand draws our attention so much; it's so damn human, so damn beautiful to look at in such a miniscule size. Sometimes I sat in the chair beside her isolet and peered through the plexiglass and just watched her lift her little hand in the white light and sort of dance her itty fingers, then lower her arm, still for a while, then lift the hand again and twiddle the fingers, experiment with raising this finger or thumb.

Last night, before we left for the evening, the nurse called us into Stella's room from Luna's. When we got bedside to Stella, we saw that she was on her back, on the breathing assistance, and her eyes were wide-open. She was blinking ever so slowly.

Stella and Luna have both opened their eyes, here and there, for brief moments of time. They don't tend to keep them open, though. This wasn't true, not for this instance. Something new was happening. She was keeping her eyes open. Now of course full term new born babes can't seem more than 12 inches or so from their face, so really, what Stella could have seen must have been minimal, but it wasn't so much what she was seeing as sensibility of her gaze. There was something there.

I must sound crazy; I must sound pathetic or desperate. But there was a kind of intelligence there, an awareness, or at least the appearance of it, which in my condition, exhausted and longing for something normal, will suffice for now. Whatever it was, it seemed like a living breathing creature, our creature, looking consciously back at us, thinking about it. Likely it was only the look of it, but it felt very good, and we liked seeing it. We liked standing there beside her as she seemingly gazed with thought or wonder up at us. The eyes did not roll in different directions. They were fixed, unmoving -- blinking calmly -- and the whole visage of her small face seemed, for a few brief moments, fixed on us, although she likely had very little idea what or who we were....Whatever happened, it was a powerful moment. She seemed like an average baby, for a short time, and it gave us hope for the coming weeks.