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.