Twins

Estella looks crazy in this photo. She's the one crouching, with her tongue partly out of her mouth. Luna is the one half-standing, lips pursed.

This photo was taken in the Adirondack chair in our front yard. It was taken in the Spring. You can see the bushes blooming popcorn-like blossoms in the background.

At one point this summer, Tallulah (the seven year old) covered this entire chair with words, in chalk. Then she 'painted' chalk covers all over the chair. Then it rained, and all of the lovely pastel colors washed off into the grass. The grass around the base of the chair was sprinkled with fine, multicolored chalk debris.

Just a few days before this photo was taken (by me), the babysitter Rosie had chopped bangs out of the girl's ragged hair. The bangs have just begun to grow out.

We had a long summer. In two days, it's over.

We'll be feeling like that chalk then.

Snapshot

My girls...

Twins

Here's a recent picture of the twins...

One year

Put together a video celebrating Luna & Estella's first year...

Home!

November 5. The twins are home! Writing those words -- suddenly -- it's shocking. I feel a kind of buzz come over me. But they're home, truly home, resting right now in a crib, together, in our bedroom.

We had heard that Stella would be coming home last Thursday, October 29. The factors here were simple: can she maintain her own body temperature, can she keep gaining weight, and can she sleep in an open crib, and can she take a bottle for 3 days? She passed the tests, and we were given the call. Come get your child, the NICU nurse said, it's homecoming day.

I had been envisioning this moment for 11 long weeks. I have not missed a day of seeing them, even if only fleetingly at night, after a busy day in the office. Eleven weeks, or 77 days, or 1,848 hours. And now here was my baby girl, Estella Faye, coming home.

I didn't feel like cracking, though, which is what I thought would happen. No I only steeled myself for more, because I knew the story was not done. Luna would stay for another week or two. They had attempted to keep her in the open crib, but her temperature kept falling.

Jenny & I met the NICU nurse about three in the afternoon. The nurse on duty has been through alot with us -- she'd been the primary nurse. Jenny embraced her, and nearly broke into tears. I couldn't watch. I filled out paper work. I got the car seat ready. I pulled Tallulah's art work off the white boards. Over the course of weeks, Tallulah had put together about a dozen drawings, in various shades of crayon, of us, of the twins, of her, of the NICU, etc.

We left after about an hour, with Estella in her car seat. I carried her. The car seat felt light and vulnerable. I peeked down at her every few strides, nestled in blankets. Only her little scrunched face appeared. I didn't feel great. I felt nervous. I thought a great deal about how much longer we would have, about how many more nights I'd be coming to see Luna.

But it wouldn't be that long. Not at all. It would only be a few days. To our shock, the NICU nurses and docs began testing Luna again, in the open crib, and for this round, she passed. Only two days after Estella was discharged, we got the phone call from the nurse -- it was for Luna to come home as well.

The same routine -- Jenny & I are arriving around 3pm, filling out paperwork, tearing down artwork. I was surprised only to see Luna in her new crib -- if you could call it a crib. They had turned over the large crib to another kid, and Luna was now resting, swathed in blankets, in what was essentially a giant stainless steel pan. So this is where her journey would end then -- from the dozens of wires inside of a incubator, to a cold steel tray, and a waiting car.

This departure from the hospital rocked me more than Estella's. This was it. We would not be coming back. Our time at NICU would be over. We walked slowly out of the pods, and Jenny said good-bye to a few nurses. The primary nurse carried Luna now, and I think it was a moment of pride for her, to see these two girls she'd cared for weeks on end finally end their journey.

I had washed my hands with the blood red soap one last time. I had squirted my hands with the alcohol sanitizer one last time. I'd sat in the green pleather rocker and held Luna one last time while Jenny signed off on some forms. I took a last look around the "pod," where the walls were now occuped with new isolettes, with new kids.

A woman immediately to our left was having pictures of her baby made. She'd been with us since the arrival of the twins. Her boy would be going home the next day, although with an oxygen monitor. She is much younger than us, and I've never seen the father, although he has come in daily. She wears tight jeans and hoop earrings and talks on the cell phone. Her boy is huge, over six pounds. We say our good-byes.

Walking out of the NICU with Jenny and the nurse carrying Luna was a deeply moving experience. But I didn't want to fall apart. I had set a goal of this moment, and now it had come, and I savored it. I don't ever want to go back to that place. I don't ever want to have to go through the agony again. We walked slowly through the lobby, past the sinks. I asked the secretary to buzz the door, and the door opened, and out we walked, for the last time. A few moments later, I'd pulled the car out of the parking deck and idled it in front of the hospital.

It was a Sunday afternoon. We were by ourselves in the driveway. The nurse and Jenny came out and I opened up the back of the car. It was quiet, desolate, and overcast. I clipped the car seat into place. I gave the nurse a hug. Jenny passed along her business card and then gave the nurse a gift, a set of necklaces that she had made -- a moon, and a star, for our kids.

This nurse has been taking care of premature babies for over twenty years. She took the present quietly, and embraced Jenny and told us to call her if we needed anything. Then the double doors of the hospital closed behind her. She moved quickly back into the hospitals, to the elevators I'd been riding for weeks, back to the NICU, back to work.

Then we were on our own. Estella, 5 pounds. Luna, 4 pounds. Ready for living.

*

I had thought very little about what life would be like for us, Tallulah and the twins when we brought them home. I remember mentioning to Jenny that the things most folks complained about when having babies -- the sleepless nights, the dirty diapers, the incessant crying -- all of that seemed like it would be a wonderful experience for us, nothing to complain about at all. Just get the girls home.

I wish I'd thought about it more. Getting the kids home was a revelation. This was going to be serious, twenty-four hour work. The past two weeks have been overwhelming, frightening, and profound. We've endured some frightening choking incidents, several doctor visits, and some long, long nights of wailing and gargling.

A few days ago, we had to take both girls in to a scheduled appointment with a pediatric surgeon.

Luna has a hernia, which she has had for some time. The hernia is actually one of her ovaries, which has popped through the folds of her lower abdomen. Estella is still living (thriving) with a cyst in one of the lobes of her lungs. This will likely require some surgery.

Jenny & I sat together in the small, dank doctor's office with the twins in car seats on the floor before us. We talked, we waited. Every now and then, Luna or Estella would squawk or sigh. They were nestled under blankets, under the hoods of the car seats, only their small pink faces visible. These are our kids. These are survivors, endurance champions. Jenny & I fell quiet, looking down, finally, in a way, willing to believe that we would get through this, and that more, more than we dared to dream was about to happen to us, and happen for a long, long time. It seemed to get very, very quiet in that room just then, and very still, and I thought that so much of what had happened to us was beautiful, lovely luck, and it was all only the start, only the smallest of pivots against the greater, huge wedge of the living to come. I waited. I tensed. I smiled at Jenny. She smiled back at me. We looked at our twins, and just then, there was that knock at the door. And so it begins.

Coming home?

October 27. October We are lucky. How to be happy? I'm not sure. I don't know what happiness is any longer except the next moment.

The past two weeks have gone quickly, and the news has shifted rapidly. All good news, all the stuff of life, of persistence, of what is to come. The piece of me that was on the floor remains, and I feel scarred, but I'm still breathing, and the girls are all right. More than all right.

In brief, Estella is coming home, in just two short days, if all goes well with this next and final phase of their stay in the NICU. Tonight Jenny is "rooming in" with the twins, at the hospital, in a small hotel-like room down the hall from the NICU. Every few hours, she'll wake up and nurse Estella, and possibly Luna. If Estella does well, she'll come home Thursday.

While Jenny is with Estella, the nurses will be able to monitor Estella from the NICU. Estella will still be hooked up to her leads that keep track of her vitals. If there is a problem, the nurse jogs down the hall to see what's happening. The monitor is a tether, a lifeline.

Really we have been tethered, in so many places (heart, guts, mind) to the NICU itself, for ten long weeks. Amazingly, that's how long this has been going-on. Ten weeks as of tonight. The twins are ten weeks old, which makes them 37 weeks into gestation -- if they'd gone full term.

Estella is almost five pounds. She has been sleeping in the "open crib," and they've removed her feeding tube. No more sinuous orange line tucked into her left nostril, no more giant syringe flowing pumping breast milk from atop the unit. She has been feeding strictly from a bottle for over a week. For five straight nights, I held her in my lap, with her head resting on my knee, and I gave her a bottle. Down the hatch, all of it, every time. "You don't know how lucky you are," a nurse remarked last night. "I don't want to even think about the horrors I've seen," she said, and she shook her head. "I work here," she said. "You come like you guys do, you don't see it all. But I see it all, and it's not pretty." She wasn't articulate enough to describe what she meant. I could only guess. "Most kids born at 27 weeks, coming through here, have severe problems. You don't know how lucky you are."

Is she right? Are the problems -- like Luna's brain bleed -- looming? Will there be one tonight? Or is this something the nurses say to you, to make you feel special, to make you feel as if you've triumphed, either to make you feel as if what you have been through was not ordinary, when in fact it is, or to make you feel extraordinary, because it truly is that type of experience. I'm not sure. I don't want to guess or wager an answer. What is it the writer Gardner said? Revel in the questions themselves, not in the answers.

Stella looks, stunningly, like a small, full term child. Our child.

As for Luna, she is doing very well, too. I don't know what will happen tonight with her. She weighs three and half pounds, much less than Estella. Her body seems smaller (although they look more and more identical), and she may still require some tube feeding. But here is the thing -- the girl is a fighter. "She has come a long way, and she may need more time," the nurse said. "Babies like her rarely go home this soon, but she is doing very well...." When Jenny & I went to the hospital at lunch today, we discovered Luna & Estella in the same "double wide" open crib, decked out in the Halloween costumes that their grandmother from St. Louis had shipped. The adorable factor was thick in the air, almost overwhelming. Trick or treat? The nurse said, "I want her to go home with Stella." So there could be that happening, too, which is both wonderful and frightening.

At some point, in the last few weeks, we have inched from one anxiety and into another. Now that the twins look as though they'll survive, we worry now about our ability to handle them at home. I told a nurse about Jenny's fears, one evening, and she laughed. "We like a paranoid mom," she said. "It's good that she's nervous. That means she'll be a good mother."

I have no doubt of that. And I feel good about my ability to handle what may come, although confidence has nothing to do with the fear I feel.

I wish we could bring a monitor with us, and we may be required to do so. But if we don't, we will just have to be vigilant.

Tallulah

October 17. Today marked the first day that Tallulah got to meet her sisters. We made some special arrangements with the lead physician, and very early this morning, we took Tallulah to a conference room adjacent to the NICU, where a nurse brought in Estella and Luna to see and hold.

Jenny held both the twins, I snapped pics, and Tallulah scrunched in close, carefully watching her sisters, sometimes holding Estella's head in her hand.

We had a precious ten minute window. This was somewhat of a risky thing to do, but the docs had okayed it, as has the supervising nurse. I was self conscious about having Tallulah in the waiting room, where we're required to scrub down, and where a nurse confronted us about having a child in there -- the rule is, no kids under 16. I wasn't exactly comfortable being the exception.

Lots of folks have asked us about Tallulah, how she is handling all of this. It's been a tough eight weeks for her, no doubt, but I believe she is doing okay. Really I have no way of knowing for sure. She has asked some heart-breaking questions here and there, namely, "Are the twins going to die?" We thought it would be good for her to see the twins and show her that they were living, breathing creatures, her sisters, her future cohorts. She was aglow the whole visit, and very tender and careful with the twins. I know she has wanted sisters for a long while, and I know this wasn't what she expected. It's not the normal routine she had encountered in books, with the sweet fat baby wrapped up and grinning in a crib. No this experience is totally different. All the same, in the end, I think she will be proud of what she'd had to go through, although a great deal of it, if not most of it, has been a struggle for her to understand -- or at least, to articulate.

For the past weeks, she's been making a squishing sound in her cheeks. She'll get preoccupied with a task, like drawing or reading, and while she's doing that, she'll "squish" her cheeks, which is really just forcing air through a clenched pocket of inner cheek. I know she's doing this because she's nervous; when I ask her what makes her nervous, she lowers her head, hiding behind her blond main, and then will mutter that its the twins. Seems she loves them more than we have imagined.

Tallulah has been getting into photography lately. We've loaned her a digital snapshot, and she's taken to photographing with it constantly. The accidental images she captures are stunning. The ones of me bending over to change out a trash bag, not so appealing. She's taken several portraits of Jenny and me, and she loves, of course, photographing the dog.

This morning she crouched over the isolette and fired off a few shots of the twins. I felt happy for her. She liked the whole notion, and while I think some of it was imitating me, I think a big part of it was "articulating" or "understanding" for her, a way of compartmentalizing the experience, of trying to define it for herself. If the camera stops her squishing, so be it. We all need some kind of camera, don't we?

This was also the first moment that our entire family was in the same room, together. This I did not realize until much later. A family of five. I spent the entire time snapping pics. (Not ready to post those yet, too close to the moment) Later I realized what I'd missed, or captured, however you want to look at it.

This was also the first time the twins were huddled close to each, so very close to each other, in the same little crib. They were swathed and on their sides, just centimeters from each other, almost as if in the womb again. We have held them closely, but we have not put them together like this, and here they were. At one point, Tallulah huddled over them, looked down at them, smiled.

She is a good kid, a lovely kid. Today we walked up to a "festival" at the Greek church near where we live. She wore her pink flamingo costume. Literally -- there is a giant flamingo head to this crazy outfit, sits on top of her head; and the arms are wings that she can flap, and there's this cottony pink tail that hangs off her rump. Ridiculous. At the festival, in the parking lot and on the soccer field, there was a moon walk, a cake walk, some bean toss games, etc. Trashy good, giants bags of popcorn, chintzy goods for sale on cart tables, baked goods. We bought mom a scarf, and we racked up a ton of fattening items on the cake walk. Then Tallulah got her face painted. It was a cold, blistery afternoon. The walk back was bitter, into the wind. I gave Tallulah my black coat, and she wore it with relish. She walked between Jenny & me, and I couldn't help up crack up, this cute blond kid in a giant black overcoat -- and cheetah prints stocking, did I mention -- with a flamingo head. She was laughing, kicking her legs, rolling her big blue eyes.

Eight weeks in the NICU for her sisters. I washed Stella tonight in the tub, fed her a whole bottle, then brought her to my shoulder and shuddered. I thought of Tallulah, and I hoped, hoped she was going to be okay. This isn't easy for any of us, most of all her. I can only imagine what is going on in her intense, imaginative mind. All I can do is get home and hold her, too, bring her to the same shoulder her sister had breathed on, rock her until she sleeps, then place her gently down into her bed.

Putting on the Pounds

October 13. The last two weeks have been the easiest for us, comparatively speaking, and for Luna & Estella. (I say comparative -- imagine having only half your body in flames as opposed to the entire body) They have begun to put on weight, and their "desats" have begun to minimize. Desat is lingo for the measure of their heart rate. When it goes down, trouble. When it stays up, around 90-100, you're golden. You don't get any dings and beeps on the machines, and you don't have fretful nurses tinkering with wires and starting wide eyed at the monitor. We've scaled back on those, the point where some visits, I get none.

Our lives have begun to take on something of a routine, however strange. I visit at lunch, for an hour or so; and then I go back in the evenings for 1-2 hours. Before going back to work, Jenny was clocking 6-8 hours a day with the kids, holding them, rocking them, doing whatever the nurses would let her do.

For Jenny the past week or so has been quite an adjustment, however. She's back at her job, which she loves -- but the stress of worrying about the twins while working is tough. Also there is the question how to balance her time. As of this week, she's getting into a groove, but it hasn't been easy arriving there.

There are time at work, for myself, when I want to get up and go check on them. But I don't. I gut it out. Really you go to see them more for yourself than anybody else. You go to see them to make yourself feel better. No tragedies? Check, I can get on with my life. Tragedy? Okay, all else pales.

I've been holding both of them more. It's a good feeling, the feathery heft of their little bodies in the crook of each elbow. Two lives, I tell myself. I'm holding two lives. When I have them in each arm, I can look from one to the other and compare their appearances. Yes, they're identical, and that is clear, but Luna is much smaller, with a more squished head. The nurses like to crack jokes. "Go ahead and give them your wallet now, Dad," or "We feel sorry for you, Dad." And I think, bring it on, that's fine. They're beautiful, these small blue eyed creatures. They're seeds of life.

Tonight Jenny & I were lucky enough to be able to visit together; and Jenny got to give Stella a bath. She was able to dip our little girl's body into a plastic tartar tub of water, scrub her up with soap, then shampoo her thin, delicate hair. Then Estella was bundled up in blankets so that only her head poked out of cone of linen.

Estella seemed to love the bath. No crying, no kicking, no whimpering -- meanwhile, a kid in the adjacent pod wailed like it was being paddled. She sat in the tub with her eyes open, alert, inquisitive. Jenny held her by her bare back, and I could make out each notch of the small, curved spine, bursting at the seams of the blue skin. Jenny brushed her hair with a small brush when it was done and noted that Estella has a cowlick "....like her daddy once had."

Both Jenny & I have had the chance to feed both girls with a bottle. The techniques for doing this vary. I've settled on holding one of the girl against my knee, with my hand supporting her head. I keep her at about a 30 degree angle, and then I gently press the nipple of the bottle in her mouth. You have to shove the thing in there, basically, which is uncomfortable because the nipple seems much to large for the tot's mouth. But it does in, and once it's in, and the girl isn't gagging, she begins to tug on the nipple. I've done this about three times now, all with Luna, and she's drained every bottle. When she's done, she crashes hard. A little milk seeps out the corners of her lips.

It is a joy, there is no other word for it, to hold her, and to feel her entire body quake with each swallow of milk. I can literally feel the muscles pushing the milk down her throat and into her belly. My hand shakes with each swallow. I picture the milk being absorbed, then somehow, turning into fat; that's all I want for them now, get fat.

Another note of progress; they are both off the canula. They are breathing on their own! Four about five days now. No issues, whatsoever.

To seem their faces without the plastic V's coming out of their nostrils was something of a revelation. They look more like babies and less like pin-cushions. They look alike. They look a little girl, and they look fatter.

To date Stella is showing no side-effects from the cyst in her lung. I asked a doctor about it at noon, and she felt that this was something that could be treated thorascopically at a later date, when Stella is much larger.

This past week, in short, has been remarkable, and although we're not happy or void of anxiety, there is a kind of move, emotionally, towards the next phase of this process, which will be bringing the girls home. You get a certain comfort level in the Special Care Nurseries. These girls have 24/7 care, with very experienced nurses watching them constantly, with high specialized, sensitive machines monitoring an assortment of vitals. Okay great, but what the hell do we do when we get them home? With no machines? No nurses? Just us, in the screaming early morning hours, wondering if this or that behavior is normal.

I have begun to believe that there will never be another normal day in my life with these kids; and, I have begun to accept that I will always, constantly, be worried about them, whatever their condition. I have entered a kind of tense emotional existence that may not end, and that will probably sap me dry. At the same time, I'm sure it will transform me in some positive, wise way that I can't quite comprehend.

Meanwhile we press on everyday, and I think we feel better about the lives of the twins and our chances for them getting home alive and well -- better than we've ever felt. But, God, I hate to say that aloud, I really do.

Jenny & Tallulah were sick, with bad colds, for a five days stretch. Jenny could not go in to visit the twins. Too high a risk for passing on the bug to the twins. So it was just me, alone with them, visiting them, and I tried to visit more and stay longer.

During that time, I told myself I would not get sick. I would not, and I did not. The thought of not one of us being to visit them was too much for me to bear. I could feel a thing here or there threatening me, but I was not going to let it happen. I will not be sick until they are home and well, and I can go off to some remote locale and crawl under a blanket and let all the powerful emotions that have wracked me finally win. But I might not even do that, either. No real point to it other than being self-indulgent.

We've begun to talk to a few other parents. One of them, a young woman, has been there as long as us, and we saw her little boy tonight, in mom's arms, twice Estella's size, plump and satisfied in his mother's arms....and beside them, an "open crib," which means he is regulating his own temperature, a huge step towards heading home. (Our girls are still in climate, temperature controlled isolettes) Her little body, like our twins, were born at twenty-seven weeks. She was very proud of him, clutching him to her neck, grinning at us. He is still wearing his canula, having trouble learning to breathe on his own, "desatting" all the time.

As of tonight, the girls have been in the NICU for eight weeks. As of this Thursday, they will have been "36 weeks" in gestation. Fifty percent of mono mono twins die in utero. Another fifty percent die in the first few weeks of life, when born early. But our girls? They have defied the odds.

I believe we are going to make it.

Milestones

Oct. 3. If the twins had not arrived early, at 27 weeks, they would have likely been delivered two nights ago, an evening that marks the 34th week of their development. A milestone.

So we have made it this far. Without much to do it other than what we manage to believe we can do, what we manage to do every waking hour, to the best of our know-how.

Another milestone -- Estella has hit 3 pounds. Stella! Stella! That's big news. 3 pounds is a lot different than 2 pounds. The number three, in the mouth, literally sounds larger, feels larger. And the image you might get in your head from a 3 pound baby is somehow much larger and more comforting than a 2 pound baby....Luna remains at 2.5 pounds.

And while that is good, it's been a tough few days. Jenny has been sick. Very sick. A tough cold, which has robbed her of her voice. She speaks hoarsely, and it's like a different person standing there. The voice I am so used to hearing coming out of her mouth is gone. It's disconcerting.

But what's worse is to know that she can not, under any circumstances, visit the NICU now. We can't take any chances. For a few reasons. First, if she transfers the cold virus to a twin, it could endanger the life of the twin. Secondly, if she sees them, and then a twin develops an infection, Jenny won't be able to live with herself.

As hard as it is, she hasn't gone to the hospital in three days. It's been all Tallulah time. But Tallulah is sick, too.

I am not going to get sick. Period. In times like these, I have this peculiar ability. I will not get sick. I will get sick later. I will not get sick.

So I've been the only one seeing them, getting the updates...and holding them. For the first time, last night, I got to hold Luna. But not only my second born; I also got to hold Stella, with Luna, one gal in each arm.

Stella's got a big, round head, and she's heavier than her older sister. But ole Luna, although smaller, has a more intriguing face, at this stage of development. Her head is more narrow, but the eyes and the mouth are unusually expressive. What the personality is, I can't yet find the words to describe. Dare I say there is something wise about sweet little Luna's expressions? The wide, knowing eyes? The dubious, whimsical lips? The amused demeanor? I don't know. It's likely me trying to find something in her small face, some sense of life. But maybe not. Maybe, crazy at it sounds, a human being at such an age, without the cognitive ability, can be someone, can have spunk, can make a mark.

She certainly made a mark on me. As she did on Pops and Gran, who came to see them this afternoon. Pops took lots of photos, and I snapped some shots of the grandparents huddled around the isollettes. Gran took a moment to hold Stella's hand, which was touching, my lovely mother gently grasping the fingers of her grandchild, so tenderly, so much in awe. Click click click went my camera in my hands.

And poor Jenny at home! I wish it didn't have to be this way. But we must be safe.

Stability?

Sept. 28. We've had a few good days. A few good days! It's startling to say. And although we've sworn off being superstitious, I have to say, I don't like saying that.

Last week, both twins were moved out of the critical unit and to what's known as "intermediate care." Technically, the equipment in this area is the same as what the girls had in critical; but they have less minute to minute attention. Each nurse in intermediate care tends to three babies, while in critical, they watch over two, or less.

There's less privacy in intermediate care. The isolettes are positioned along a wall, not in separate rooms. For Jenny to hold one of the girls, she has to drawn a curtain along a U-shaped track embedded in the ceiling. Even then, it doesn't feel that private. Sitting there, you can easily hear the conversations of the couple next to you or across the pod.

But no matter. They didn't stay here long at all. After three days, they were shipped off to the "C" unit, where they'll likely be for the next four weeks, or until they head home. Until they head home! The very notion makes me squirm. Really? That soon? But what am I saying? That soon. It will be almost 2.5 months by then.

The C room is lousy, in my opinion. The machines feel older, smaller, cruder, less reliable. I get the impression that we're sort of placed in the hallway. The girls are still in their isolettes, but they're sort of jammed along a wall, and the room feels like an add on to the main "pod" area. There are no windows in the space, and there's alot of foot traffic, nurses scurrying here and there. Just across the pod is the main entrance to the "term" baby nursery. Lots of activities there. Lots of fat babies, which used to make us envious.

At noon today I walked in and Luna was being fed by a bottle. Breast milk. The nurse was holding her head in her blue Latex fingers, and holding a nipple attached to a large plastic syringe in her other fingers. Luna, wide-eyed, was gurgling down the milk, the nipple popping out of her lips sometimes, glossy with milk. Luna's lips were dripping with the creamy stuff. Every few seconds, the nurse would gently press the syringe down a notch. I could see Luna's tiny swallowing in her thin neck. She was taking it in. She was swallowing it. Luna was drinking. I had not seen that until that moment.

Stella had done the same earlier, and would do it again later, but I wasn't there to witness it, just Jenny.

Seeing Luna drink was extraordinary, encouraging. Here was a normal thing, here was something simple and beautiful and more like what you'd expect.

A good day. Here's hoping there are more to come.

Luna was awake, vivid, receptive. When the feeding was done, she pawed around the air and complained. She wanted more. She wanted to feed again.

There are moments like these that will define the tenor of my life, I'm sure of it. Jenny said recently, "I was one person before the twins were born, and now I am a different one." I don't doubt that about her. I see it in her. I see the changes. They're good.

As for myself, I'm not sure. I do not want to say until the journey is done; and who is to say when that journey will be done? You get these docs in here saying, 'We'll know how healthy they are when they're eight.' So what do I think? The only rational thing to say is, 'I don't know.' I know that I love them, as Jenny does, but I do not know what meter I am judging my experience by. In the end I think that is the only thing I can do that is honest, for myself. I will take this day by day and hold tight and make the best calls, and maybe in all that, I'll discover what success means for me, for us, for the girls, for this life.

I can say this assuredly, though. We've been lucky so far. Damn lucky. We've gotten help from family, and we've gotten tremendous support from friends and colleagues. My old buds have been critical in their support, and we've been showered with generosity from the folks at the Garden, which is wonderful.

The only thing that is getting us through this experience emotionally is us, Jenny & me. There can be no doubt that this experience has taken a piece out of both of us, and that something is left behind (our youth?) but that is all right. You either endure and learn or you do not. We do, we learn, and we have grown closer because of it, I'm sure. As in all love, that can change, but I think something fundamental has been sealed tighter, and I like that feeling. I am proud of Jenny every time she comes home from the hospital,and I know she has been holding those twins for six hours straight. How to be a mom when you can't bring your kids home at night? How to endure that? I can't speak for her. But I know she is doing all she can do.

I am not a religious person. In the times of greatest worry -- and these may come yet -- I don't find myself reaching out to some supernatural being or god. I believe in love and kindness, and for lack of a better term, careful thinking. It's sounds silly, I know, but that's what I do. A kind of strength kicks in when it has to, and it's all a big mental effort (and who knows, I may wake up screaming in the middle of the night years from now!) And I believe in Jenny, of course, and what we have, and I think we can make it through anything.

Tomorrow night is Tallulah's talent show auditions. Jenny spent the late evening hours making a "sun" outfit because Tallulah is going to sing a solo piece, 'You are my sunshine.' Tallulah, who has probably taken all of this the hardest ('Why is mom at the hospital again? Is Mom okay?), will spend the afternoon with Mom, on a stage in a cafeteria in an elementary school, in a brilliant yellow costume, belting out her little song. Good days, indeed.

Latching On & Holding

Sept. 23

I’d held Stella briefly a few days back – for about 1-2 minutes, but tonight I had the first opportunity to hold her for an extended period of time, about fifteen minutes.

The nurse wrapped her in a blanket. I sat in a rocking chair and held her close to my chest. She was wide-eyed, and she was active, churning her right arm in and out of the blanket, burrowing into stomach with her feet, flopping her big head left and right.

There is some receptivity, some inquisitiveness, some spark of life in her deep blue eyes, which seem to occupy about half of her face. When she is not grimacing, which is often, and when her eyes are perceptive and clear, her eyes take up half the territory of her meager face.

Big news on the feeding front – Jenny was able to nurse Stella for a while today. According to the night nurse, Stella had “no problem latching on.”

That was the good news. The bad news, kind of worrisome. The cyst that had shown up in Stella's lungs some three weeks back was re-examined by X-ray today, and the results were mixed. The cysts have grown in size slightly. I picture a small, bubble-like mass that develops tinier bubbles on its surface. That is the expanding cyst system....The plan now, which only makes marginal sense to me, is to wait until the twins head home for a follow-up X-ray to see if the problem has gotten worse. If it has, it could mean surgery for the little girl. Can you imagine? Surgery on those tiny lungs? Makes me shudder.

Drops of Milk

Sept. 22. Probably the best day the twins have had, which gives us great joy, but also tremendous nervousness. What the heck is going to happen next? Everybody is intent on being cautious, constantly. Brilliant performance once day, horrific infection the next. I walk with a cane in my consciousness.

They're both over two pounds, and they're both breathing using only the nasal canula. That's the big news. When their lungs are working reliably on their own, we'll be in great shape, provided we can stave off infections or illnesses.

The only problem, for the time being, appears to be 'pooping,' as everyone likes to call it. (I'm not a big fan of this term, feels too juvenile, but I've got to roll with the NICU lingo for now...) They have to take tablets that encourages pooping. Hoping to get that sorted out.

Best day yet, but as always, there's an asterisk. We live with asterisks sort of constantly hovering over our shoulders. Jenny came home late and gave me the low down on some blood tests that the docs have been running on Stella. These tests seem to indicate that she may have a genetic disorder that prevents her from digesting some particular items -- no way I could possibly recall the exact scientific term for it. If the tests are accurate, then we'll need to take some aggressive action to fix the problem, or Stella could end up some neurological issues, frightening ones.

They've taken blood twice to determine if Stella has this problem. The first time, the result was positive, but the sample was also ruled "contaminated." A second test got the same result. So naturally she's getting a third test, and now we await those results.

Both kids have been stuck repeatedly in attempts to find good veins for IVs. They've had IVs put in both hands, both feet, and now there is talk of shaving Luna's head and going in there. The IVs only last so long before the entry wound threatens to become infected, and infection is a big deal, can be life threatening. As soon as an IV entry point becomes the slightest bit angry or inflamed, they pull the IV and find another vein. But, in Luna's case, we're running out of veins.

One option is to put in a PICC line. Both girls had PICC lines a few weeks back. This is a thin IV line that goes into their foot and gets threaded up their body until it ends up near their heart, in a large supply vein. The PICC line is more invasive but less prone to infection.

I watched a nurse insert a PICC line a few weeks back, on Stella. First, she doped the poor girl with morphine, which made her disturbingly lethargic for days. The nurse covered Stella's body with the trademark hospital blue gown and cloth so that only her little foot stuck out. Then she gently pushed the PICC line into a vein in her heel. She gripped it with a pair of tweezers and kind of coaxed it along. Blood backed into the syringe, from the vein, and this was a good sign. That meant the nurse had tapped into a rich, flowing vein, which meant when they started pumping in fluids, they'd get into the bloodstream easily.

Jenny is exhausted, but doing a great job with the twins. She holds them every day, both of them. She holds them close to her chest, in the dark with the curtains drawn over the unit. Sometimes she reads them books or naps with them.

I like finding them in the middle of the day, when I visit for lunch. They'll be in the corner of the room. I'll sit and bring a chair over and lather my hands up with disinfectant and then pull back the blanket and peer down at one of our daughters, and sometimes, their small blue eyes will be wide open, their small hands grasping Jenny's skin. I'll glance at Jenny, and she'll be smiling.

A couple of days ago, a truly landmark event. The nurse on duty decided that, because Stella was being so vocal during a bath, she might be ready to try some milk from a bottle. So they loaded up a bottle and held the nipple over Stella's confused mouth. They squeezed out a couple of drops, which startled the poor girl. Then, according to Jenny, a few drops meandered into Stella's mouth, at which point her eyes "doubled in size," as Jenny put it. Stella swallowed, and then took a few more drops. Jenny said, "It was the first time Stella looked amazed."

Okay, good news. Maybe, somehow, we're making progress.

Luna and Estella, one month old

Luna and Estella turned one month old tonight. Their birthday was a August 18, 2009. They've made it about 31 days.

The pictures here are from tonight. Both of them are strapped into their breathing devices. Luna opened here eyes wide. This was right after a bath. There was a teeny glint of life, of passion, in her right eye. She seemed to be staring straight at me, and there was something, I think, inquisitive about it, a bold frank childish curiosity.

I don't know how well they perceive things. I can't picture myself in their isolettes, their little translucent boxes, these giant hands constantly handling them, these faces peering over them every so often, sometimes murmuring; and every once in a while, one of them takes you out and places you against her bare chest and holds you for hours, slowly rocking you.

I decided, tonight, to get a feel for what Jenny must feel when she is holding the girls. After Stella had enjoyed a sponge bath, I asked the nurse if I could hold her. The nurse said sure and wrapped Stella in a small blanket and passed her to me. And, for the first time in my life, I held my third daughter.

I was struck immediately by her weight. I don't know what I'd expected. But she has heft. She has substance. She is is not made of tissue. She is there, more solid than I guess I'd thought. I cradled her head in one hand and her body in the other and held her close to my chest. Her eyes were wide, wide open; I wished my eyes were cameras. I had not seen her open her eyes so wide. I brought her a tad closer to my face. She blinked. She moved her eyes, the darkest blue you can imagine, within their sockets. I just looked at her and felt, very distinctly, that she was looking back at me, and that was a powerful moment, however ambiguous in truth or not.

I think for me, more than any other moment in this long process, that moment of holding her, which stretched on for several minutes, cut deep into me. I felt in tune with something that I should have been feeling for weeks. I'm not saying I haven't felt like her father until now. No it's something different, something more palpable in the act of holding, of touching, of being that close to her, of feeling her exact weight, of seeing her gaze. I think it was, purely, the physical sensation of being a father, not so much the emotional one, and that moved me so much that I was afraid I'd drop her. When it came time for the nurse to take her back, I knew I had to flee the joint. I thanked her profusely, then turned and said good-bye. I felt light. I felt dazed. I played the image of her sweet blue eyes over and over in my mind. There is a chance we will make it through this, but the shape of it all, the outcome, will be nothing like what I've imagined, or what I'm capable of imagining, and I'll be wholly changed. I felt lucky, changed, alone and free. I felt alive.

Infection

Just when you think things are going smoothly, more trouble. Luna's got an infection.

The infection -- they're common, but not good. One of the nurses had noticed Luna looking lethargic; and she had been having numerous episodes of apnea, where she stops breathing. When this happens, you can look up at the monitor and see her oxygen levels plummet. 90%....85%....70%....40%...And the goddamn thing is ringing like a slot machine. Ding, ding, ding. The nurse goes quiet, won't look at you. Makes you sit up in your chair, or in my case, stand up and pace.

What next? Get in their and do CPR, I want to say. On a baby that size? Wouldn't we crush it? I've pictured myself delicately compressing her chest with two fingers and blowing into her mouth. No, the nurses then have to “stimulate” Luna, which means massaging her and patting her back and shaking her, coaxing her to breathe again. They make some adjustments on the machines flooding air into her, through long pipes. They’ve stopped with the nasal canula and gone back to C-Pap, and they’ve set that breathing device to “push” more air into her lungs with each inhalation.

They have also taken some more blood. When they take blood, they take it out of Luna’s heel. Right now it's the only place on her body with fat. I’ve watched it several times. They bare Luna’s miniature foot into the air and poke it with a syringe, the metal thin as a spider thread. A little blood comes into a tiny stout bottle, which the nurse has to thump or flick continually so that the blood doesn’t clot.

I watched them do this to Luna and then sat in the nursing chair in the room for a good two hours until the docs came back with the results. ‘Abnormal.’

Abnormal. A good word for a teenager to hear when receiving criticism about a poem he’s written; not a good word to hear from your doc when you’re talking about your month old daughter’s blood.

Friday will be critical. Is the infection in the blood or in the stomach? Evidence seems to point towards the blood, which isn’t great, but much better than intestines. They’ve begun to pump her with antibiotics. A nurse told me last thing this afternoon – ‘You’ll have a different baby by tomorrow afternoon.’ What they’re suggesting is that the antibiotics work quickly. We can only hope.

I spent a little time in the evening, in the dark, hunched over Luna's isolette, just staring down at her. Really I think she is going to be all right. In the panorama of problems, this could be thought of as minor. But she has come so far, and done so well, that part of me thinks our luck could not possibly continue. It worried me, I have to say. She was very still, only her ribs moving with each assisted breath. The nurses always commented about her spunk, her fieriness. They've seen none of that today. I walked off and doused my hands with disinfectant and then went back to the isolette and opened one of the small rounds doors. I reached in with one hand (not the hand with my wedding band on it b/c I'm worried I can't clean it free of germs) and fished her hand out of the blankets and waited a few moments until she clenched my finger. Good luck, kid.

Gas

Minor setback to report this evening. Love those minor setbacks.

Both the girls are suffering from an excess of gas in their bellies. Several theories are being floated as to why, the most likely being Jenny's diet. She was eating some beans & rice recently, and it's thought that the gas off this food was transferred to her breastmilk, which the twins are eating on a regular basis. Possibly, their stomachs can't handle the gassy milk.

Their stomachs are tremendously bloated. There is a fine, fine lacework of veins just under the skin of the tumescent swells. The veins are purplish, red, microscopic. The bellies look painful. Beneath them their legs are very small and bony. I want to squeeze the bellies, gently, ever so gently, and let out the air, give them relief.

I recorded some video of Tallulah the other night on my Flip and took it in and played it to both girls. The Flip video plays back on a small 1 inch monitor, with sound. In the video Tallulah introduces herself to her younger sisters and then tells them to start farting. The sooner they learn to fart, the better they'll feel. Tallulah cracks up giggling at the end of it.

Gotta say, laughing never felt so good. All the same, still worried sick.

Luna, sweet Luna

September 9. Wish I had more time to write more. I get exhausted at night and end up having a few beers and crashing with Jenny. But it was a great, great day -- can't say that about most of them the past few weeks.

I've been going to the hospital during my lunch hour, which seems to stretch out a little longer than an hour once I get there. Today I got there and visited Luna right off.

The act of visiting is becoming routine. Jenny & I do it differently. She tends to stay for hours, and she holds the girls. She opens her blouse and puts their small warm bodies against her skin, and she'll hold them and rock and talk to them.

When Jenny is holding one of the girls, I can lean forward from my chair and pull back the edge of the blanket and see their small, pinched face up close, very close. Usually they put a hand against Jenny's skin, beside their cheek. Their eyes are large, almost too large for their sockets. The skin over the eyes is almost transparent, reveals the exact shape of the globe that is the eyeball.

The twins seem very happy against Jenny, but it's hard to say what they feel or don't feel, what they know or don't know. The cynic that I am, I tend to think they don't feel much. But the nurses disagree, and there has been some evidence to suggest that mothers who engage in "kangaroo care" tend to have healthier babies that go home sooner.

When Jenny isn't there holding one of the girls, I stand by the isolet and pull back a blanket that covers the plexiglass dome and stare down through the slightly blurry plastic and watch my daughters.

They move, but very slightly. They stick their legs out of the blankets, stretch. They churn a little. The breathing always seems labored.

Sometimes their faces contort, as if in agony. But I don't know if they're feeling pain or if it's just some kind of facial tick. Maybe they're going to the bathroom.

I wish I knew what I felt exactly when I'm standing over the isolet looking down at them. I can say this, I suppose. When I'm looking at Luna, I'm rooting for her. I'm hoping she will make it. When I'm looking at Stella, I'm remarking to myself about her size, much larger than Luna; and I'm wanting her to hang in there, to persist, to keep growing. I worry less about Stella than Luna.

But today was a big day for Luna. I was standing over the isolet, for about a half hour, partly listening to the nurses gabbing in the pod, when a new arrival came. Luna has a new podmate, a little boy across the way. A couple of nurses got busy hooking up the newborn. One of Luna's doctors, who had just been at the delivery, arrived with them. She busied herself with the newborn and then came and talked to me.

I tried to act like it was no big deal. I said something like, 'Looks like you're busy this morning....New arrival and all...' I didn't want to appear too anxious. But she had news, good news. The latest ultrasound reveals that the ventricles in Luna's brain have not increased in size. In fact, they're a little smaller. The PVL has not increased and remains static. The doctor feels good about her condition and doesn't seem too concerned about the bleed.

I had to sit down and think a few moments after thanking the doctor. I could feel a kind of weight leaving me...no it's more like this. The whole drama of the birth and sustaining life just takes a big piece out of you, like you've been bitten by a shark or something. Really, it's silly the way I just put it, but I'm tired, and that's how it feels. Like you've lost a chunk of your left hip, and your own bleeding just gushes, just rolls on out, and you feel yourself getting weaker, but you stagger on. You keep going.

I texted Jenny on the old iPhone, but didn't give her the news because she texted back that she arriving at the hospital. When she came into the NICU, where I was waiting ,the doc gave her the news. 'That's good to hear,' Jenny said. We embraced.

All the same, in the time between when I got the news and when Jenny arrived, I dialed the happiness and enthusiasm down a few notches. I don't want to get excited. I'm more comfortable, it seems like, playing against the odds.

A couple of days ago, while Jenny was holding Luna, the nurse suggested we change the tot's diapers. These diapers are about the size of a playing card. Jenny lowered the squalling bundle off her chest into her lap, wires slung over her shoulder. I peeled back the diaper. It was filthy, an Army-green paste mixed with cakey white diaper creme. It was thick, a mess, up and down her legs. I took about a dozen wipes from the drawer in the isolet and slowly daubed up the waste and the creme from her toothpick legs and crumbled bottom. Jenny peered into the darkness and held Luna tight. We laughed. Something normal, regular, for a change. I clipped on a new diaper. Jenny brought Luna to her chest again, closed her eyes, rocked.

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.

Skin to Skin

August 28. Jenny got to hold Luna this afternoon! It was a first. Grandma Ruthie was there, just flew in. The nurse took about ten minutes to disconnect and reconnect some wires, then gently lifted Luna out of the open isolet and placed her on Jenny's chest. Jenny opened her blouse slightly; Luna snuggled in against her chest, and then the two of them were wrapped up in blankets....I held them, but briefly. I'm worried I'm getting sick because my whole body aches, but I think it's just fatigue. Still keeping my distance.

I haven't seen Jenn this happy since the twins were born.

Both the twins now off the ventillators and seemed to have stabilized. No word yet on the ultrasound, but we are taking some heart in that they're stable. Lots of peeing going on now, which is a big deal.....Later in the day Jenny got to hold Stella, too -- but not skin to skin. (pictured)


The fact that the girls have been stable has done a couple of things. First, my body feels utterly different than it did a few days ago. The whole contraption is relaxing. Too much, almost. I'm walking around with mild nausea, and in a strange way, I want to feel like I did a few days ago, alert and tense, ready to pounce. Secondly, it's made us optimistic, even a little high. No drama for few days, small progress, small hope that the bleed won't turn out bad for Luna. How bad can it be if the blood pressure and everything else is normal? I don't want to feel to happy, that's what I keep telling myself. It's ludicrous, but that's what I feel. I want to feel miserable so that I'll either be ready for the next round of challenging news or I'll be truly elated when we get good news.

Jenny held Luna for about an hour, talked to her, grinned.....She told me a few days ago that she woke up and decided to quit feeling sorry herself.

My notes are scattered, a mess. It's all numbers about blood gas and oxygen intake and beats per minutes, etc. That's all you end up thinking about, numbers. We need better numbers.

Waiting

August 30. Spent the last four days simply waiting. Just waiting. All we can do is wait until Monday when we hope to hear from the docs again about Luna's ultrasound.

Both girls still on the ventillators. Stella having problems digesting. Blood pressure is normal, but not alot of food going in the stomach.

Luna has not urinated in days. Jenny is very upset about the lack of peeing. We check every diaper and hope to see a big yellow stain but nothing.

Jenny's sister Sarah came. Took her to Gladys Knight "Chicken and Waffles" down the street from the hospital. Good stuff. Also had taken Bob there.

I have been eating like a carnivorous dinosaur. Lots of meat, lots of fried crap. Several beers a night, but not tonight. Scaling back. Waiting.

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.