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.

Setbacks

Monday, August 24. I headed back to work today. Why the hell am I working? Not sure, but I feel like trying to get some sense of a normal life, and things are piling up on the desk at the office.

I tried to get a few things done, but it wasn't easy.

It was a strange feeling talking to folks who knew about the delivery. Word had been sent out via email about Stella and Luna, but no one knew about the preterm delivery and the NICU. I told some folks that the twins were doing fine; I gave other the details.

Sometimes I sat at my desk and lost track of myself. I'd kind of snap out of it and look back at what I was writing. A few times, folks would peek their heads in and say a few words. I liked talking to the people who had no idea the twins had been born. I liked talking about work.

Bob took Jenny to the hospital to visit with the twins. When I got there, around noon, he'd left, and Jenny was in the room with Stella, a wild-eyed look on her face. I had to hold the wall, but I let go when she told me what was happening. Workers had been in the room painting that morning, and when Jenny first showed up, the nurse was changing tubes/wires/etc on Stella while the fellow was in the midst of painting. The fumes were noxious. Jenny was furious, apparently got into a nasty argument with a few folks. I showed up just as the NP rolled in.

I told Jenny not worry about the paint fumes; Stella was getting air out of tank, not out of the room. She was still upset. She insisted to the NP that no painting occur in Luna's room until we had more info about her brain, and the NP agreed.

Stella had been breathing on a canula, which is a step up -- just oxygen in her nostrils -- but they'd put her back on C-Pap, and then back on a ventillator. Luna still on a ventillator. Okay, they're on life support, no other way to put it.

Stella is having trouble going to the bathroom. Fluids are building up in stomach. Her stomach is bloated, stretched, veiny.

Jenny spends time holding the twins minuscule hands, rubbing their arms and legs. I hold them a little bit here and there. At this age, their bodies are covered in lanuga, a fine layer of whitish hair. Their skin feels like felt.

Their heads are wrinkled, squished. I watched a nurse take a crumpled ear and reshape it in her blue latex glove fingers. No kidding, she took this rolled up half inch of skin and ligament and shaped and ear about the size of a dime.

The twins wear little white cotton caps with tassels on the top. Luna wears a yellow tassel, Stella a blue.

Luna's foot

Here's a picture of Luna's foot. No size comparison here, but it's about the size of Stella's hand.

Stella's Hand

Here's a picture of Estella's hand gripping my finger.

Stone Mountain

Bob, Tallulah & I took some time away from the hospital late in the day today. The twins have been alive for almost four days.

Rachel showed up this morning. (Jenny's sister) She flew in with her little boy James. Just showed up on the front steps and called on her cell. Unebelievable.

We had a visit to the hospital, and Jenny started handling the twins. Then it was off to the Varsity, which is downtown, fairly close to the hospital. The place was packed. I kept noticing the hordes of healthy young kids. I couldn't help wondering if Luna would one day be among them.

We hiked Stone Mountain, which felt good. When Tallulah wasn't listening, I asked Bob alot of questions about a "grade three." (Bob's a pediatric neurologist and has seen these cases often through his decades of doctoring.) He told me it was hard to say -- the important thing appears to be the size of the ventricles. If the ventricles increase in size, we're in trouble. If they stay the same, we'll be okay.

There was wild fox ontop of Stone Mountain. Some idiots kept chasing it with a camera. The fox was zig-zagging, panting, looking about wildly. I felt sorry for it. All these clumps of people -- probably hundreds -- milling around the top of this giant rock, and the fox is confused, disoriented. People tried to take pictures. A beautiful animal, deep red fur, quick moving legs. He trotted towards a little boy, and I hope nothing would happen. Would the boy approach it? He did not.

There is nothing we can do but wait on the next ultrasound. It's agonizing. I'm not sleeping well. I keep watching old movies that I like when I can't sleep. I've had alot of beer, but not too much, because I'm worried I'll have to drive into the NICU at a moment's notice.

I went to the hospital late in the evening and huddled over Luna in her isolet.

August 21: Grade 2 or 3?

Distressing news today. Very upsetting. Docs did an ultrasound on the brains of the twins. Stella checks out fine. Luna, unfortunately, has a small bleed in her brain.

The bleed is in a centralized location of the brain. The doc told me what it was, but I can't remember not. Cortex? Unsure. Here's the deal. It's not a huge bleed, but it's significant. It's located near the "ventricles" of the brain. These are important cavities near the top of the spine. They help to deliver fluid to the spine, help with development, growth, movement, etc.

Dr. Keene called the bleed "a grade two," or "possibly a grade three." This is on a scale of 1-4, with 4 being the worst.

Bob had come in, and met us in Jenny's room. And Jenny had gotten the word privately from Dr. Keene while Bob & I had stepped out to get Tallulah from school. (My folks have gone back to Athens). Jenny tells him, then tells him the grade, and I could see him go gray.

Jenny was tremendously upset as the day wore on. I tried to keep her spirits up. It's hard to know, though, from Bob's take and the doctor's take, what to expect. A grade 4 is like a stroke, and a grade 1 is something most kids recover from easily. But a grade 3? Could mean anything.

But what does it matter? I'm not sure. I'd love her the same, wouldn't I?

We went home today. Jenny was miserable, inconsolable. Bob made a run to Whole Foods with Tallulah, and eventually, Jenny said she was up for a walk. Three days after the C-section, and she wants to walk around the block.

August 19

I saw the twins for the first time since delivery this morning. Jenny wasn't feeling well enough to leave her bed. I walked down with a nurse. Banner morning, momentous, but I was overwhelmed, tired, unsure of what or how to feel. Hadn't eaten in forever, didn't want to eat. Worried about Jenny.

I had to scrub up my arms and hands with some red surgical soap. The soap was the color of blood. The brush had thin, sharp bristles on one side and a sponge on the other. The nurse supervised my scrubbing. Had to be two minutes. Then it was off into the NICU.

Luna is in one room, Stella a room down the hall. Both are on the same equipment. They're on ventillators and feeding tubes. They're bundled up. They wear tiny blood pressure cuffs and various stickers with wires attached to monitor different aspects of their bodily function. The nurse told me everything, but it's a blur now.

The isolets are like domed cribs. The dome is plexiglass, and clear. There are two holes on either side. The holes have doors on them. To touch the kids, you have to open a door. The nurses typically open two doors and work on the kids with two hands at once.

Later in the day, my folks came by the hospital. I took them to see Jenny, and then I took them to see the twins. They had to go in one at a time with me.

I was worried about how my folks would react. Nothing like this has ever happened to anyone in my family. First, twins. Then the news it was "mono-mono" twins. Then the early delivery. Now the long hard slough in the hospital. The docs told me it would be 2-3 months. That suprised me, but I guess it should not have.

Later in the day I wheeled Jenny down to the NICU and she got to see the twins for the first time. I positioned the chair next to the isolet. A nurse lowered the bed a little bit, for each twin, for Jenny to see clearly. She touched the plexiglass. She talked to them.

Jenny's doing okay, but it's been rough on her. She did not want the pregnancy to end this way. Hoping she's going to be all right, and I'm planning on sleeping in the room again tonight, on the couch under the window. My folks have agreed to take Tallulah again. They'll stay at a hotel. Tomorrow Jenny's dad comes in from Kansas City.

C-Section

I had to wait outside the delivery room for about an hour before Jenny's C-section. I made a few calls to family, namely Jenny's mother and my folks. Also put a call into Jenny's father but couldn't reach him.

I wore scrubs and paper boots and a hair net (but, I have no hair?) and a surgical mask. I could not sit down. I paced in the small room.

A curtain made a divide in the room between beds. I could hear the folks on the other side of the curtain, a woman and her father. The woman had just given birth. She talked about the birth weight of her boy, Will. He was nine pounds.

We'd been given estimates of the birth weight for the twins: two pounds, and just under two pounds.

As soon as I managed to sit down, a nurse hustled into the room and told me to hurry, it was time for delivery. Next thing I knew we were jogging down the hall. 'They're in distress,' the nurse said. 'We have to hurry.'

Within a few moments of being in the operating room, the delivery occurred. I squatted next to Jenny, who had a curtain across her shoulders that prevented her from seeing the delivery, the open incision on her belly. She'd had an epidural. She was awake. Her arms were spread wide on the bed, and they were trembling, a natural reaction to the dope in her spine.

There were about twenty people in the room. Mostly women, mostly nurses. All the docs were women, two of them very young. Two isolets for the twins had been set-up on one side of the room, giant hot white bulbs above the felt bedding.

I said a few words to Jenny. Then, I looked over the curtain. A tremendous release of amniotic fluid. Just gushed out of the opening, sloshed over the hips of the doctors, speckled their scrubs with fluid. The docs were amazed. 'Never seen that,' said the lead.

They were in a rush. The heart rate of one of the twins had plummeted. The lead reached inside of Jenny's bare belly and pulled back the skin, ever so slightly. Then I saw both of the twins, heads down, ensconced. The lead pulled out Luna, the smaller twin, naked and white as fresh dough. 'Baby A out,' she hollered. She passed Luna over to a tray and a nurse. Her bright white body turned crimson, blood flowing throughout her veins. She was motionless, and I felt my whole body clench. I held Jenny's hand. Out next was Estella, so pale. But neither one of them were as small as I'd imagined, especially Stella. They were long, and from my position even, I could see delicate, long, nimble fingers and toes. 'Baby B out,' the lead hollered, and Stella's body color blossomed into rose.

The next good thing to hear? Baby B is breathing. I swallowed, and it hurt my neck. I sat down for a moment. I told Jenny the twins looked good. We could hear Stella cry, a sound like a baby kitten mewling. Then finally Luna was breathing. 'Baby A breathing,' the nurse said to me.

I got up and went to see them, wrinkled and red, but not all that small. Dark hair, long arms and legs, hard to imagine they were only two pounds. Stella was kicking, kicking. I took a few pics with my iPhone. I went back and sat with Jenny and told her the girls were beautiful.

Tuesday August 18

Jenny went into painful preterm labor this afternoon. She was frightened. She had driven herself to the maternity center at the hospital thinking that the docs would examine some pain and discomfort that she’d been having and say it was normal. But it wasn’t normal. It was pre-term labor.
When I got to the hospital room, Jenny was in a gown and stretched out on her side on a gurney. Her clothes were in a disorderly pile by the window, along with a stack of Science journals. Two nurses and a doctor were huddled around her and examining her belly with an ultrasound wand. The gel was silver, livid, glowing around her navel. No on was talking. Everyone was looking at the monitor. Jenny was sweating profusely.
Within a few minutes, the doctor gave me the details. “Baby A” was in distress. She wasn’t moving. She seemed pinned within the amniotic sac. “Baby B” was very active, easily detectable. The doctor was deeply concerned with the condition of Baby A.
A couple of other doctors came by and read Jenny’s chart. No one was doing much talking. When they did talk, they sort of muttered to each other self-consciously. What the hell were they saying?? I kept trying to ask politely, and then I wondered, why am I being polite? My wife is stretched out in agony here.
Jenny was tremendously upset. Lying on her back made it difficult for her to breathe; but lying on her side made the ultrasounds difficult. So it was a difficult thing to do but she stayed on her back and sort of panted. No one could see to get a good picture on the device. Lots of whispering, consulting in the shadows, more incessant insider muttering.
Finally one of the doctor’s that had been seeing Jenny gave us a choice.
Really it wasn’t much of a choice. We could continue with the pregnancy and try to minimize the labor pains. This would allow the non-distressed “Baby B” to grow fully, mature more, be more likely to live outside the womb. This would also threaten the life of “Baby A” dramatically. There was a high chance she would die, or perhaps live, but severely disabled, depending on the amount of trouble she was in, which was hard to say. It would also raise the risks to Baby B somewhat, if Baby A deteriorated further, which seemed likely.
Our other choice was to do an emergency C-section and deliver both babies, giving both of them a good chance of living. A second doctor said that babies born at 27 weeks, which was our case, had a 90% survival rate. That seemed good to me. The doctors gave us an hour to make our decision.
We didn’t debate long. Really it didn’t seem like much of a decsion. We were in easy accord. Of course we’d deliver them; Baby B, essentially, would be making a sacrifice to save the life of Baby A. We sat and talked, and when the docs came back, we informed them of our decision. Jenny was immediately schedule for her C-section, for three hours later.
Some time in that spell of time, we called a few people, held each other, and worked out the names for the twins. It was a set of names we’d been discussing but had yet to settle on until that moment. The smaller child would be Luna Dorothy Sanders. The larger girl would be Estella Faye Sanders (Stella).