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.