Seven Weeks or five months

I'd say that I haven't had any time to post, but the truth is that I have been spending what computer time I have available playing Scrabble online. It's addictive and it only requires one hand. Alex is napping (a rarity), so I'm gonna use my bi-ambulism to update.

At seven weeks adjusted (from his due date), Alex is now a healthy, happy 8 1/2 pound baby - almost four times his birth weight - and we couldn't ask for a better outcome. Sure, he cries sometimes for no apparent reason. He seems to want to eat all the time. He pukes occasionally. He goes for days on 6-7 hours of sleep (total, broken into short naps) and I can't get even the most basic of chores accomplished. But, this is life with a baby. I can't say that I am surprised.

He is smiling now, which, for those of you unfamiliar with this magical milestone, makes all the drudgery so very worth it.  I think he actually might be laughing sometimes.  He likes books and watching me type on the computer. He also seems to really like Jazz. We are encouraged, having feared that our genes would conspire against us to create a tone-deaf jock. I suppose there is opportunity yet for him to find the wrong calling.

I know that most men cringe at the mention of breast feeding, preferring to maintain their version of breasts as objects of desire and not infant buffets. But, given all that I have gone through to breast feed my preemie, I feel that it necessary to discuss some of the things that I have discovered in the hopes that it will encourage other parents of preemies to trooper through, because it can be done.

First, despite the mantra repeated over and over at the NICU about how supportive they were about breast feeding, I felt very much on my own when it came to realizing this unlikely goal. As mentioned in earlier posts, the lactation consultants were militant and uncompromising, and ultimately unhelpful. The nursing staff was focused entirely on getting the baby out of the hospital, no matter by what means (i.e. putting Alex on formula and giving me "you're nuts" eyes when I insisted that I was indeed going to breast feed him at some point). Let's face it, a baby who has been bottle fed for two months is not going to take easily to a more difficult means of eating.

But, something happened with Alex and I, something that was greatly underestimated by both the lactation and the nursing staff. I believe that Alex might not have been developmentally ready to breast feed until a couple weeks after his due date. I know that that is counter to what every expert out there will say. They will say that babies can do it as early as five weeks before their due date. Well, they can eat by mouth at that point yes. But, after having totally given up and resigned to my fate with the pump and the bottle, one day, about three weeks after his due date, Alex just figured it out on his own. And from that point on, he needed to breast feed, often refusing a bottle altogether.

That breast feeding is soothing to a baby might seem obvious, but the focus had been, up until Alex decided he preferred mom to a plastic bottle, entirely on weight gain. The bonding thing, well that would be nice, but... My experience with my preemie is that it has been absolutely essential. I believe that it has made Alex more secure, less fussy, and better able to relax on his own. It certainly has allowed me to relax, and to feel a part of the greater mothering world. There is so little help out there for mothers of such early preemies, it is impossible not to feel further isolated by the plethora of literature or advice written with only full-termers in mind.

There are a few things you can expect if you are attempting this difficult feat. One, a lot of babies need to be taught how to breast feed, not just preemies. So, some of the message boards can lend helpful advice, even if they are talking about their full-termers. Two, the baby ultimately has to figure it out on their own. I worked once a day for a couple of weeks trying to get Alex to figure it out. In the end, he just did it without any tricks or equipment. Three, even when the baby starts to breast feed, it's going to take a couple of weeks for them to get good at it. I still throw a bottle in once a day to top him off when he seems like he isn't finishing up on me. Four, babe will be on a much shorter feeding schedule. In my case, we went from three hours on the bottle to one and half to two hours on the boob. It's a pain in the ass at two, four, and six in the morning. But, it is temporary. Better yet, it soothes him to sleep and makes it easier to put him back down in his bassinet.

I can say that, after four months of working toward getting my 26 weeker to breast feed, it has been excruciatingly difficult, but well worth it.

Feeling Minnesota

The Twins. It's a funny name for a baseball team. Nothing scary or ferocious about that moniker. At best, it implies a talent for deception, or a duplicity in character. I wonder what their mascot is. No matter, it is not their year to be world fucking champions.

And the state- Minnesota.  Every time I look at a map of the US without the names of states written in, I'm always left with one hole, one block that I can't put a name to. That would be Minnesota. The blank state. The lost state. The empty home of twins who have failed to advance to the next level.

Today, I found myself spontaneously crying over our lost twin. I don't know. It is just so unfair that he isn't with us. Alex is about 7 pounds now. Had they been born this normal baby size, Nicholas surely would have survived. There's no point in thinking that way. But, you do. You can't help it.

I also realize that, with no family around to help, raising twins would have made me totally crazy. I don't know how people do it. Alex, with his need to be constantly strapped to my body, can be overwhelming. I get by most of the day with just one hand, a hand that should be tending to his brother. And though AO and I have made progress with breast feeding, he still eats mostly by bottled, pumped milk. I can't imagine doing that with two, all by myself, all day long. Nonetheless, I am terribly sad that I don't have that kind of day right now.

Joey

There are specific activities that I imagined I would do every day with my baby when he finally came home from the hospital. We would take long strolls together on splendid autumn days. We would Kangaroo all the time. I would carry him in a sling every minute of the day to make up for all the time that we were separated. Most importantly, we would breast feed. It would be beautiful. But, like everything that has lead up to this point - twins, Nick's C-cam, a C-section at 26 weeks, twin loss - I shouldn't have expected anything at all.

Though we do go for strolls, they are not always peaceful and they have to be carefully timed in between meals, as Alex has a tendency to puke when sloshed about (who wouldn't?). I had no idea that Philly sidewalks were so terrible until I rolled my not-so-sleeping baby along them and then felt like a bad mom for putting him through such a rough ride.

Most of my day is in fact spent trying to get Alex to finish a bottle and then holding him still over my shoulder for an hour in an effort to keep that bottle down. It's tough to take care of my own needs, such as using the bathroom or eating, when I have a baby in one hand at all times. I've learned to do an amazing array of things with one hand. The sling thing is getting easier as Alex gets bigger and I can trust that his windpipe is not getting crushed. But, as with the stroller thing, puke prevents us from going out whenever I want.  It's clear that, for the next 18 years, nothing is going to happen when I want it to.

And breast feeding... as I've mentioned, it's really, really hard to get him to do it. So hard, I want to give up every time we try. It's more exhausting than washing all the bottles.

But, there's one thing that is exactly how I imagined it. Kangarooing. I had actually forgotten entirely about kangaroo care, the practice of holding your near naked baby skin-to-skin, until I read some helpful info today on how to improve the transition from the bottle to boob. A no-brainer, it was suggested that I kangaroo him more. We kangarooed a fair amount early on in the NICU, when he was tiny and fragile, and it was not an enjoyable time. But, as Alex got closer to discharge, it was so cold in the hospital and the staff was so paranoid about him keeping his body temperature that I stopped doing it just as it would have been most helpful. But, as I sit on the sofa with my usually irritable preemie fast asleep on my bare chest, I can't believe I let this get away from me for so long. Of course. Me and my Joey, relaxing together.

Independence Day

Finally. This morning, Alex got his first full meal directly from me. Getting to this point has often felt like teaching Helen Keller how to speak, with a lot of screaming, scraping, and kicking. I had just about given up on the hope that he could learn to breast feed. But, I kept trying, having developed a complex system that involved my pump, a bottle, a boppy pillow, and a beer. And today, I can claim that that McGuyvering worked. Not that I imagine our very next feeding to be as successful as this. But, I can at least start to envision a life without all that bottle washing. Goodness. It's a full time job pumping and washing.

Tonight, I get to get out of the house. The task of parenting has been unevenly doled out to me in the past few days and I've gotten the greenlight from the hubs to hit the town. Independence indeed.

Playing Around

I imagine that we're not alone in this figuring-out-what-the-baby-wants game. I understand now why people lived in villages with large extended families. Parenting is not natural. It's learned, usually from your own parent (that is, if you think they did a good job with you). Responding to the shriek of an infant is instinct. But, the subtler aspects of caring for an infant can be perplexing. Even with all the books, this feels like we're re-inventing the wheel.

Alex mutters a lot. It's difficult for me to make sense of why or what it is he's blubbering about. Since yesterday marked 40 weeks gestation (full term), I consider Alex to be a newborn. I had no idea newborns talked so much-- or were awake for so much of the day yemmering on in their bizarre baby language. Sure, sometimes he's trying to tell me that his diaper is wet or that he is hungry despite having just been fed. But, sometimes, he's just playing around, I guess. Enjoying the sound of his own voice. Preventing me from getting a restful nap. Reminding the tribe that he exists and not to forget him when they move to another cave.

Puke update: We stopped adding formula to the breastmilk to see if he would hold it down better. Hard to say if that's what did the trick because we also just started Zantac. But, Alex pretty instantly ate a lot more per feed and seems generally less fussy. Given that the first two ingredients of the formula are cow's milk and corn syrup, this is not surprising. Keep adjusting until we solve the puzzle that is our son.

Nice...?

Of course things are going to be different when you get home. Our house couldn't be more different than the NICU. It smells weird all the time. The pets are always barking, meowing, or shedding. The windows are open and the unfamiliar city breeze wafts past our sleeping, confused babe. I can see how moving in here could really mess up a boy's system.

But, I have to admit, I didn't figure Alex would be such a different baby once in our complete possession. Gone are the smooth, efficient 75ml feeds that kept him satisfied for four hours. Now a resident of 1550 E Berks Street, he rarely takes more than 40ml for me and that only with great difficulty and much (much) puking. He wants to snack on these half-meals every three hours, every hour and a half at night. So, yes. Just as he has fallen asleep after a long burping/vomiting, he is awake, ready for more. We started him on Zantac today in an effort to reduce his discomfort and hopefully help him keep more milk in his belly. Then, we have to work on his flipped schedule so we can all sleep at night at the same time.

People keep asking me, or I guess telling me, that it must be so nice to have him home after three months of traveling to the NICU every day to merely visit him. I haven't honestly had time to notice how nice it has been. I suppose on three hours of sleep, not much strikes me as nice. And having to share him with the apnea monitor defies the total freedom I had imagined. But, as the boy sleeps on my lap while I watch the Phillies play from the comfort of my own couch -Yes. It's very, very nice.

Parenthood day 5

Well, no one said it would be easy. Actually, they said it would be really hard. It's not that hard. It's just that you can't do what you want when you want and you often have to do things you really don't want to do at really inconvenient times.

Alex projectile vomited four times on Saturday, provoking us to take him to the much dreaded emergency room. We figured nothing much would come of it, but felt guilted into doing it anyway because Alex seemed pretty miserable. And we were right.  The wonderful doctors at Children's Hospital had little more to offer us that a possible diagnosis of pyloric stenosis, the narrowing of the stomach-small intesting sphincter, that was causing a blockage and offered us the option of waiting another five hours until the ultrasound team showed up at a reasonable hour of the morning. Having only gotten three hours of sleep the day before, we declined the invitation to bed at Hotel Sickness and headed home. A wise decision, no doubt.

Sunday was pleasant, with very little in the way of regurgitation. Sunday night, however, something weird happened. Alex was utterly inconsolable in his quest for more and more food. It was like he was in a competitive drinking contest. In the span of 2 hours, he clocked a quarter of his total daily intake. And he would have eaten more, had we not cut him off. As one of our friends aptly noted, "and thus begins the Kennedy lifelong affair with the bottle."

In an attempt to get the use of both of my hands back, I have started using a sling to hold Alex. My first try is with a Hotsling and, so far, the review is not so great. Alex is only 5 bs, but hardly fits in the sling. Worse, his head keeps slipping out the bottom, requiring constant adjustment, which defeats the purpose.

Yesterday, today

Gosh. So, as one might imagine, I haven't had much time to blog since we brought Alex home on Wednesday. Lots of laundry. Many diaper changes. It's a huge relief to have him here with us all the time, though being tethered to the apnea monitor is a big chore.

Above all else, Alex the baby is a cliche. We literally did not sleep a single minute his first night home. Between him crying (or screaming) and the apnea monitor going off relentlessly because of problems with the leads, I think we finally got to sleep around 6 AM. Not kidding. Last night, we took shifts. I fell asleep on the sofa with Alex next to me in his bouncy chair around 5:30. When he awoke at 8 ready for breakfast, I passed him off to Mike, who had called it a night somewhere around 4. Today, we tried to keep him awake as much as possible in the hopes that he might sleep better (or at least some) at night. That of course required us to be awake as much as possible.

I'm functioning surprisingly well for someone on three hours sleep, though this has given me an entirely new appreciation for what it really would have been like to have twins. My friend Kelly just had twins two weeks ago and she seems to be handling it all surprisingly well- in that she is still sane and she was not a puddle of tears when she called me today.

Today we took Alex out for a long walk to have dinner outside at a local restaurant. It was really nice. Finally a family untied. Of course AO, in a moment reminiscent of his finest NICU moments, puked all over himself. Discovering that this restaurant has no changing table, I learned how to re-dress a baby on my lap, a valuable skill apparently.

Tomorrow

I can't believe it. After weeks of thinking Alex will be home soon, he is finally set to be discharged tomorrow. I was in a mad hurry this morning, running errands and wrapping up loose ends, realizing that after all this talk about how my life has been turned upside down, it is finally about to undergo a beautiful, happy evolution that will keep me homebound for some time.

The past three months in the NICU have been terrifying and depressing, but also enlightening. I've learned more about neonatology than I ever thought possible. I've seen things that no parent should ever have to see. My marriage has been put to the test, as have my maternal instincts. Words are insufficient to describe what I have experienced since the twins were born, though this blog has helped me sort some of it out. As I sit and write this, I am crying. I hope you can imagine why.

The Formula for Success

Funny this morning that I should write about my breastfeeding woes and formula fears, because my visit to the hospital revealed a plot by the nurses to put my boy on formula in order to see if "breast milk isn't the problem". That problem would be a stall in Alex's weight gain that is keeping him from coming home. 

Their logic is to do whatever is necessary in order to get him home. I argued in return that a temporary fix is just cheating and will be problematic in the long run. Whatever they do to get him to gain weight should be something we can and will continue to do when he comes home. There's no sense taking the dramatic step of completely changing his diet for two or three days, just for us to revert it once he comes home and have him then stop gaining weight. With us living on one income, a specialty, high-cal formula is not something we can sustain at home. It will also do nothing to reduce the 100+ bottles of pumped milk crowding our freezer.

Thus began a back and forth about my diet. The question, "are you eating right?" came up over and over. I suspect this is because I'm back to my pre-pregnancy weight already. I've always had the metabolism of a hummingbird. But, I could see how it might seem to them like I'm on a crash diet. In doing some reading on how what I eat becomes what Alex eats, alterations in my diet can indeed have some small affect on his caloric intake. I pledge to eat more fish and nuts. And although it won't help him as much, I pledge to eat a lot of chocolate cake.

Other than that, we've agreed that a simple fix would be to dump what is called the fore milk and feed Alex the higher-fat hind milk. If the terms are not self-explanatory enough,  the further into a pump or feed you go, the more fat there is in the milk. Chocolate cake...

Boob envy

Several of my friends have recently given birth to healthy, hearty, full-term babies. Although there are numerous reasons for me to be jealous of their smooth transitions into motherhood, it is the ease with which they are able to immediately breastfeed their seven pound babies that makes me crazy. Their kids are born strong enough and with the coordination to do it. Those babies don't know any other way to get fed.

But, breasfeeding a preemie is difficult at best. I read this early on, but did not fully comprehend what that meant. I really thought that we'd be the exception, especially since early on, Alex seemed so amenable to the idea. But, he's been bottle fed for over a month now (I can't be there 24 hours a day) and getting him to work for lunch is proving to be pretty impossible. 

There are a number of reasons for this. Obviously, he's used to getting milk just poured into his mouth and the effort it takes to get my milk moving is so frustrating for him, he flails and screams until I give up and give him a bottle. Second, there have been a lot of interruptions to our transition from bottle to breast. If he is not gaining weight, or even losing weight, I stop. It's more important for him to grow, and breastfeeding burns more calories than it provides. If they are trying to transition him from the isolette to the open crib (where he is expected to maintain his own body temperature and continue to gain weight), I stop so that I am not contributing to him failing this test and being sent back into the isolette.

Mind you, he's still getting my milk (I pump and bring it to the hospital) and I'm dedicated to keeping him off of formula if I can help it.  But, I really want both the bond of breastfeeding and the convenience of being off the pump (there's a lot of cleaning involved with bottles).  As with every other aspect of my pregnancy and subsequent motherhood, however, I may have to accept that normal is just not in the cards for me.

I'm torn about seeing the hospital lactation consultants about this. They are, as so many women who have been consulted by them called them, the "breastfeeding nazis". They grab your tit, grab your baby's head, and mash them together violently. They tell you to relax while provoking your three pound peanut into a frenzy of frustration. They are at constant war with the nursing staff, whose job it is to get the baby big enough to leave, now matter how the baby is fed. I really want Alex to get enough to eat so he can join the ranks of babies his [adjusted] age. But, I want that to happen in a manner that he does not and I'm not convinced that the lactation consultants will be sympathetic to my situation.

A 2 K

Alex has hit an important watermark: 2,000 grams (4 lbs, 7 oz). We've been days away from bringing him home for over a week and a half now (I really don't know how long). This part of preemie parenthood, the part where progress stalls and there's no telling when your kid can come live with you despite their overall good health, is extremely frustrating. Basically, he has to be able to hold his own body temperature outside of the plastic box (the isollette). He's failed this test four times. So, the staff has decided to let him get to 2 kilos before trying again. This afternoon began the fifth attempt. I don't know what will happen if he fails again.

I had lunch today with M, another NICU mom. We were trading war stories, citing that New York Times article about the prevalence of PTSD among NICU parents, and generally commiserating about problems with staffers and protocols. We struck upon another aspect of our situation that has been overlooked in all the writing and research: temporal distortion. 

Both M and I spent over a week in the hospital before delivering our sons, who we have been visiting now for at least two months. All that time in a hospital, with our days marked by constant trepidation and a saturated state of limbo, has made the telling of time and the tracking of dates nearly impossible. When your days are both painfully similar and at the same time totally unpredictable, your brain stops recording that kind of data. It is in crisis mode, even on quiet days when everything seems to be going well. It's thinking about escape and survival and all the other primal feelings we modern humans are so good at ignoring.

You couldn't have known

I talked at length yesterday with one of the nurses in the NICU who had lost both of her premature twin daughters. They were born at 22 weeks gestation, both at a little more than a pound. As a nurse charged with caring for tiny preemies, she realized what her babies would be up against. They would most likely grow up blind. They'd have many months of struggle, only to possibly die. So, she decided to not admit them to the NICU, meaning that she and her husband held them as they died, just as Mike and I held Nick as he died. No tubes. No wires. Just a peaceful passing, inasmuch as death can ever be peaceful.

As we anticipate Alex's homecoming within the next week, I think about Nick all the time. It's impossible to avoid considering what it would have been like to bring the two of them home together. I think about how things might have been different had I carried them longer. Would more time in the womb really have saved Nick? It's normal to think this way, I think- but not healthy.

It hasn't helped that, in recent weeks, the subject of my pregnancy has come up several times with strangers or rarely seen acquaintances. Invariably, when I say that my son was born three months early (I always start out implying that I gave birth to just one) and is still in the NICU, the other person asks why I went into premature labor. It's a rude question because, obviously, the answer is going to be horrible. Doesn't matter what the circumstances. When people have medical emergencies such as premature labor, the answer to why is going to be shitty and you are going to end up crying in a supermarket or hotel lobby at a stranger's story.

But, you couldn't have known. It's a baby story. You are curious. She looks so healthy. Is there something to be learned, something useful to yourself in knowing why? Or is it just a formality? Maybe you think the storyteller wants to share her medical calamities and you are simply being polite by opening that door for her. Maybe you kind of see it coming- the train wreck- as the words leave your mouth, but you ask anyway because there is some catharsis for you in hearing horrible things. These are things that happen to other people. That is relieving. Maybe you are in denial. You ask what seems to you an innocent question, even though it is not, and you are truly shocked at the answer because you couldn't have known.

September third

Today was the day the twins were supposed to be born.

Shell Shock

It's inevitable. You see someone that looks like you every day for two months, you end up talking. I got into a long conversation the other day with M, one of the other NICU moms. Her son was born two weeks after Alex, but two weeks more premature. I noticed something about M that I had not seen in myself, though it must have been there up until recently- the look of shell shock. The expression on her face did not once vary from that of bewilderment, even when she laughed, even when she listened intently to my end of the conversation. It remained a countenance of "am I dreaming all of this or did my life really just suddenly fall apart?"

The New York Times ran a piece this week about NICU parents suffering from post traumatic stress disorder, suggesting that the incessant barrage of bad news coupled  with the incessant bling of alarms brings about similar trauma in parents who go through what we've been through as does war in a soldier. You see tiny kids almost die all the time. In our case, you see your own kid die. If you are lucky enough to get out alive, you don't easily shake the memories.

It's hard to not learn about the other patients in the NICU. With ten babies or more lined up just feet apart in a big room, you hear most everything, hushed voices be damned. We see newer parents go through that we've been through with Alex, overhearing the same medical terms we had to go home and Google in order to fully understand: bradycardia, billirubin levels, spinal tap, CBC counts, ventrical bleeds, and  so on. Sometimes, we hear them deliver really bad news and, from the corner of our eyes, watch parents grapple with things so far beyond their control, it feels like they just assumed somebody else's life. Meningitis. Cerebral Palsy. Surgery.

Life really isn't fair and the NICU is a constant reminder of this truth. You do everything right and everything can still end up completely wrong. You have no control. As one grandmother said in attempt to sooth her daughter, the mother of a 3 lb boy who was having seizures, "We'll deal with the hand we are dealt."

Little Man

I'm in love with my son. I know it's the makings of a Greek tragedy, that someday, he will betray my love by being insensitive to all that I have done for him. He'll stomp on my feelings the way that children do. He'll ignore me. He'll try to get away from me and be his own person. One day, he'll fall in love with somebody else. But for now, I am mad about him and I love it. He's undeniably handsome and when he throws a fit, he's all the more charming. Nothing makes me happier than to hear him scream out his dissatisfaction or sob because his perfect little world is somehow lacking. I guess that this is how every parent feels, my own included. I didn't know.

Alex is an astounding 4lbs 2oz today. I stopped by the Baby Gap and looked at normal baby sized clothes- not with jealousy or sadness, but with excitement. It may sound morbid to say that I had avoided buying anything for him that suggested a future because, let's face it, the odds were stacked against him. But, now I can look forward to waxing nostalgic about how tiny he used to be as I purchase size 3-6 months for him. One day, when he becomes a parent, I hope he will appreciate what this meant to me. 

Transitions

Alex has graduated to the "transitional" nursery, the quiet place where babies go to grow when they are no longer critical. He's made tremendous progress in the past two weeks, so much so that it's hard to believe that he was once the purplish amphibian of June 20th. We can now do the things that babies and parents do, things most parents take for granted. We bottle feed him, hold him whenever we want, change his clothes...

So, I am spending a lot more time at the hospital in preparation for his homecoming (perhaps within the next two weeks!). In a normal pregnancy, the baby comes out and the family is united within a couple of hours. Baby comes home with the parents. Life continues on. With Alex, life has been suspended. The past two months have seemed like one never-ending dream in which I can't tell if what is happening is real or imagined. 

We have refused to let ourselves consider what life will be like when he is home and we don't need to go to the hospital every day to visit him. Now, I am starting to think about what that will be like and, I have to admit, I'm more than a little nervous. He still seems so delicate. What if I hold him wrong? What if I don't understand his cues? Will we feed him enough or change him enough? Someone else has been doing this every three hours for the past 9 weeks. Are we up for it?

I had envisioned toting Alex around with me everywhere all the time when we got him home. We would take naps together, go for long walks together. We would finally be free to be mother and son and I could finally make up for all the time that I have not been able to hold him. But, it probably won't be like this. He's likely to come home with an apnea monitor, the bane of so many parents of premature infants. It's a small device that hooks up to your baby and sounds an alarm whenever baby seems to stop breathing or his heart rate slows down. More wires, more loud beeping. More scares.  Just when you think you are home free, think again. Life with Alex will never be "normal".

Marathon

In the story of the Battle of Marathon, a soldier runs himself to death in order to carry news from the the battlefield at Marathon to the citizens of Athens that the outnumbered Greeks have beaten the invading Persians. That's it. News of victory. And he died. So impressed are we by this one man's fatal endeavor that we repeat his race toward death millions of times a year. Why repeat an action that evidently killed the first man who tried it? Even if this fable is not historically accurate, it shows us something about what we value in humanity. We love to see other people put their own best interest aside in the pursuit of an impossible feat. It makes us feel like their is a point to all of our own suffering. The reason for trying seems to be a tautology: Suffering is useful because suffering is useful, just like the point of living is to live. We have faith because we must have faith, and so on.

Hm. There is a point, and every marathon runner has reached this point, where you are so exhausted by your own feedback loop of logic, nothing makes any sense. I have reached that place. I no longer remember why we decided to have baby. I only know that now we have one and he is in a hospital and we have to keep going with this crazy business because there is no stopping. I go to the hospital every day and watch my boy sleep and wake, get and give blood, breath and stop breathing, all the while fabricating a faith that one day, he will come home with us so we can start to be a family. I wonder, when that happens, will I see him as the marathon or as the person who ran it?

3 pounds

It's hard to believe that Alex was born six weeks ago and is 33 weeks post-conception today. Born at 2lbs 4oz, he's made tremendous progress, now clocking in at a whopping 3 lbs 1 oz and outgrowing the micro-preemie clothes I bought for him. We're hoping this week he can make two huge strides: getting off the nasal canulla that helps to keep air flowing when his premature nervous system forgets to make him breath, and to try to feed him with a bottle (he is currently fed through a feeding tube). I can't be that disappointed if he doesn't succeed at either goal, since he's not supposed to be born for another seven weeks.

There's been a lot that I've wanted to write about lately. Foremost is that I am feeling weary of this limbo. Though much of the stress of becoming a NICU parent has dissipated as Alex becomes more stable, another stress is taking its place. I feel like I should get a job, do something with my time to help out our bank account. But, in five weeks or so, I'll suddenly be the full-time caretaker of a baby I have watched grow inside a plexi-glass box like some kind of TV show. I often feel that I am not Alex's mother, but just a visitor in his complete hospital world. The excitement of seeing him evolve has started to take on a perverse  hue. With the nurse asking "Do you want to take him out for awhile?" followed by "We need to put him back in now," Alex is starting to seem more like a kitten in a pet store than my son.

Beneath the obvious identity confusion, I can sense a real crisis. I am 35, I just closed up my business in order to raise twins that did not materialize, and I need to figure out what to do with the rest of my life. Unanimously, people will respond with, "Raising you son." Duh. Of course raising Alex will be the focus of my life . But, I don't cease to be a three dimensional person with my own needs and aspirations simply because I have a child. In fact, failing to pursue my own goals will result in a total lack of respect from my son as he grows up feeling that his mom could have been something, but chose not to. Being a person your kid can respect is more important than telling him what's right and wrong.

Away from A

We went to the beach this past weekend. Going out of towm whilst your baby is in the NICU begs this unnecessary comment from people: "You deserve it after all you've been through." I suppose people don't know what else to say, or maybe they think I feel guilty leaving him for a day and want to help erase that. But, I wonder, who doesn't deserve a trip to the beach, no matter what they have been through? It's an uncomplicated pleasure enjoyed by prince and peasant alike for as long as there has been leisure time. My response: "You deserve it too."

Still, being away from Alex causes a cramp in my heart.  Even when we are home, we are separated from him for most of the day. Mike and I talked about this problem and found that we had the same strange coping mechanism. The many hours apart makes Alex seem more like an idea than a baby. It's like before we got pregnant, when we would talk about our imaginary baby Nick Nak. Then that idea turned into my belly. Then that belly turned into Nick and Alex. Now there is just the idea of a baby named Alex who is only sometimes real.

However, the elusive (and addictive) mother-child bond became indelible on Friday. When we stopped at the hospital on our way to the shore, Alex's nurse made an offer I could not refuse: a first attempt at breast feeding. Non-nutrative sucking is what they call these preliminary attempts. A chance for Alex to get used to the process-- or, as we experienced it, to get the taste in his mouth that will turn him into an inconsolable two and a half pound vampire.

Again, nature and its perfectly designed mechanisms surprised me. Inches before the first nipple-mouth connection, he was agape and anticipatory. Only one thing prevented my miniature boy from engaging in an all-out feeding frenzy: his gavage (or feeding) tube which blocked entry to his mouth. I'm proud of the boy for nonetheless trying to extract something tangible. A mother at last, I could happily depart to the beach knowing that when I returned, Alex would know exactly who I am.

Impossible Words

June 27, 2009

There are a few words that I never thought I would have to associate with my pregnancy. One of those is “funeral”. Mike is on his way to begin the arrangements for Nick’s cremation. Our plans are not settled just yet. But, the basic idea is that we will have some small gathering at a park with friends and family and spread a few ashes under a tree. I was thinking of planting something there, some flowers or a small shrub- even though the park rangers might not like it.

It’s one of the more surreal aspects of losing a baby. You have to do something with the body. You immediately have to start thinking about how to memorialize someone you never got to know and that requires a conversation with the other parent that has to be logical and clear. “What do you want to do?” Well, I’d like to turn back time and, like some choose your own adventure story, change fate. But, with that being impossible, I would like to forget about it entirely. Again, impossible. So, I guess we’ll have a memorial.

Another word that I was hoping I would never have to consider post-partum, though with Nick’s lung issues, there was always the chance, is “single”. Though it’s expected that Mike and I should feel cheated after our loss, it’s really Alex who has been robbed. He seems to me only one half of a person, with the other half mysteriously missing.  I never wanted more than one kid, but now feel totally responsible for giving Alex the sibling he was undoubtedly supposed to have. 18 months. That’s how long I’m supposed to give my body before trying to do this again. And do I really want to go through any of this again? In 18 months, I’ll be 37. All of the anxiety about bringing a healthy baby into the world is exponentially worse at 37. 

Hospital 9: Father's Day

June 19, 2009: 

Today is Friday. Mike has taken the day off from work to get some things done around the house and have a little time to himself. He’s been stretched thin going to work, attending to the pets and the house, and then rushing over here to grab a few hours of bittersweet time with me before going home to sleep alone. He never eats dinner and has lost about five pounds in the past week.

He’s going to try to make it to my ultrasound this morning, though they only ever give me 20 minutes notice. It would be a nice occasion for him to participate in my healthcare, as he has been mostly relegated to the position of Dad, which is pretty far down the list of important people to the hospital staff. We don’t get it. When it comes to maternity issues, the father is always treated like an accessory, told to go hang out until something deemed important happens, as though men are some how immune to the stress of watching their baby mommas writhe in pain they helped bring about, or that every moment of this process is unimportant except the last one (when the baby comes out). Delivery and all the medical care involved in getting to that point are completely mother-centric, shredding the togetherness that many couples work hard to maintain during a pregnancy.

Sunday is Father’s Day. It’s hard for us to celebrate, given the precariousness of our situation. I’ll be 26 weeks, 5 days. Babies born at this gestational age have roughly an 80% chance of survival, though there are no stats to describe Mr. A’s likelihood of making it, what with his C-CAM being so large. The medication they have me on, Indicin, is like a very strong ibuprofen. The good news is that it works in keeping me out of labor. The bad news is that it presents risks to the fetuses and is given in 48 hour spurts, separated by as many days as possible. So, when they take me off it today, I could end up in labor again within a day or two without a safe way to stop it. 

Hospital 8: No Rest

Wednesday, June 15th:

Hospitals are lonely places, no matter how many people come by to see you. They can leave, you can’t. You’re scared, maybe in pain. Put two such people in a room and they end up talking about their common woes, like new inmates at a prison.

I have a new roommate, though she’ll probably be discharged this evening. She has a hernia that they’ve decided not to operate on. She’s spent the past three hours telling me all about herself, particularly about her relationship with her most recent baby daddy, who she has been dating for almost exactly as months as she has been pregnant. She has three kids by other guys and doesn’t work. I’m always curious how that plays out, having kids with no job. Now, I know all about her relationship, her kids, her life and I don’t even know her name.

She told me everything about her through a curtain, like a confession... or an urban bedtime story. She talked until I fell asleep, only to be awoken every half an hour to have monitors put on or taken off, vital signs checked, medication administered, doctors inquiring if I felt dizzy or weak (who isn't when roused from a deep sleep?), French toast and coffee slipped in front of me. No rest for the infirmed, I tell you.

Hospital 7: Choice

You soon find in a hospital that there is no privacy, not with your body, and definitely not with your situation. It’s you, a doctor, and a curtain. Your roommate hears everything. I have a roommate now. She’s 24 weeks along and facing a far more dangerous situation than I. Her water broke, which means that her timeline is probably short. I can go on and off medication that mitigates my labor and keeps me stable. But, with no amniotic fluid, there’s only so much time she can keep a baby in safely. It can be a heartbreaker, this baby business. 

This poor woman is facing a difficult choice: try to save the baby at all costs, though the chances of survival are only about 70% and serious disability is likely. Or-- let nature take its course (i.e. let the baby demise in utero and try again later). This got me thinking about the abortion debate. The staff here, with all their experience and knowledge of the power of modern medicine, has been trying to steer her toward a C-section the moment the baby seems in distress -- to save the baby at all costs. My roommate and her husband, realizing the risks to the long-term quality of life for a baby born so very premature- should the baby even live- are not entirely convinced. They want a more sure thing.

This is what I find so fascinating. Right now, she is offered a choice to intervene (the equivalent of keeping her baby) or to not intervene (probably akin to an abortion at this point). A 24-week termination is, as far as I understand it, considered a partial birth abortion and is illegal in this country. But, if there is a chance that “nature” might do the job (because the parents refuse to interfere), this is their “choice” and seems to tip the scales of morality ever so slightly in favor of OK.

I’ve been trying to encourage her with both my experience, that they told me the day I got here I would probably have the babies within hours and have instead been here a week in fairly stable condition, and anecdotes related to me by nurses of miracle preemies who went on to do just fine.  The doctors, they need to show you the ugly for legal reasons. But, all hope is not lost.

The Here and Now

In between posting my hospital journal, I feel like I should probably write a little about what is currently going on. Tomorrow, Alex will be three weeks old, or minus thirteen weeks, if you calculate from his original due date. He's doing pretty well, so we've been lead to believe. As one doctor puts it- no news is good news (and- you panic when we panic). No one at the NICU is ever in a panic, to the point where they totally ignore all the alarms going off, even when they seem to indicate a problem, like when I went in yesterday and saw that Alex could barely breath because he had spat up his lunch into his nose. I must admit- I panicked. This is a persistent problem that I've tried to point out to several nurses an doctors. They almost always patronize me with "I checked him a couple of hours ago and he was fine". Hmm... I was also fine a couple of hours ago. Now, I'm freaking out.

I find myself thinking in terms of one baby now. He was born.. he will be... I had a son... I had two sons, actually. They were identical twins. This leads to some uncomfortable conversations. For instance, I went to my first Phillies game since the twins were born last night. In the handful of games we attended previously,  we had become somewhat friendly with the couple in the seats in front of us (we all have partial season tickets and sit in the same seats every game). Last night, they asked how I was feeling, which lead into the unavoidable, "We had them three weeks ago" and then, "Oh? how are they doing?" which must be followed by, "One didn't make it. But, the other one is doing really well." And then, "Oh, I'm so sorry" punctuated by a sad silence. Mike and I have had this conversation several times now with people who don't know about the blogs and don't know what has happened. We've come to deliver the news with what must seem like a disarming flatness. How else can we answer the question? It happened. It's the past. Now, there's just one baby. But, he's doing fine... I think.

Hospital 6: The Move

Tuesday, June 16:

I thought stabilization would be a good thing. One by one, the tubes and monitors came off as my condition improved. I could finally sit up straight, move around in bed a bit, without the help of two people. After four days of near complete immobility - freedom at last. The idea of being here for a while, as the doctors have implied, was not seeming so bad. Then, I got moved from Labor and Delivery into the busted, run down Ante Partum ward of Pennsylvania Hospital. 

It sucks here. Unlike the ward that I came from, I have a roommate (along with her entire family), Mike can’t stay overnight with me, and I have to pay daily for the crappy TV (vacuum tube, with a VHS player- I kid you not) and crappy local-only phone. Apparently, the people next to me are equally disappointed and have no problem voicing their discontent to the nursing staff. Brave new world indeed. Hospital bed rest looks like it could be the suckiest thing that has ever happened to me.

The nurses of L and D, the ward I was hastily dismissed from this evening, were amazing. They were patient, sweet, seemed to know their stuff. I get the impression that the nurses here in APU are, well, less successful at their craft. With a 5 to 1 nurse-patient ratio on a slow day, I don’t expect to get much respect around here. I wonder if they’ll remember to feed me. 

Oh, and as I approach day 5, they still haven’t worked out the “bugs” with the “free” wireless internet, deepening my separation from the world. Tomorrow, I demand the window bed. I deserve that much.

Hospital 5: First World Problems

Tuesday, June 16th:

Today is my second day of solid food. Hospital food gets a bad rap, and that’s because it’s generally pretty bad. Well, if you are starving, as I was by 8 this morning, there are far worse things in the world. But, I think it’s funny. They give you a menu to fill out and then they just bring you whatever they feel like. Let me humor myself...

My order for this morning: banana, scrambled eggs, English muffin, yogurt.

What I got: French toast and sausage (same as yesterday), cream of wheat, orange juice, milk, coffee. (Why would they serve any patient coffee? Aren't we all on a half dozen medications? Aren't we all sleep deprived?)

Hospital 4: Homebound

Monday, June 15th

“Homebound” is the term used here to refer to long term patients, not people on their way home. That’s me now- Homebound. Now on my fifth day in the hospital, I still can’t get onto the wireless network. So, I still can’t communicate with the outside word except by text message. No news, no e-mail, no entertaining myself with weird Google searches. To top it off, today is Monday, the day everyone returns to work. I don’t’ expect any visitors until Mike gets here around 6pm. This would all be fine if I could chat with people while they sit in their computers at their jobs. But, I can’t.

Last night was tough. I hadn’t slept since 6 am and, even after they cleared out the other woman and her family around 11 pm, making this (at least for now) a one-bed room, they kept coming in to strap monitors on me or take my temperature every half-hour or so. At some point, my body gave up and I slept through whatever it was they were doing to me—including a cervical exam.

I am still contracting about every 5-10 minutes and am 2 centimeters dilated, as I have been since yesterday morning. At least my cervix has lengthened and I’m not in pain. Trying to keep it that way. Tomorrow marks week 26, still way too early to deliver, and there are no plans to stop labor again until I have been clear of the magnesium sulfate for at least a week. So, if I go back into labor in the next couple of days, the boys are coming out no matter what. It’s life or death, you could say, that I don’t go back into labor.

I get to use the toilet like a normal human being now (no bed pans or catheters jammed into my bladder). But, after four plus days on my back, it is unbelievable how much my muscles have atrophied. I have to support the weight of my belly with both hands, as my stomach muscles are no longer doing the job. It took me ten minutes to get out of bed, get to the bathroom eight feet away, pee, and get back in bed. When I see my doctor today (hopefully around 9), I am going to ask about exercises I can do in bed.

Hospital 3: Toxicity

Part three in the journal I kept while in the hospital:

Saturday, June 13

Magnesium sulfate is not good for the human body in large doses- and I was on a large dose to start. It slows all bodily functions down. It loosens all mussels, including the ones that control breathing and the heart. And it makes you very hot, dizzy, confused. So, for two days, I’ve had a nurse in here every half hour and a doctor every two hours to make sure I’m not getting toxic. Seems that I tolerate it well, which is good because I may need to go back on it at some point.

The Plan had been to take me off the magnesium today at noon and we see what happens. But, since I’m tolerating it so well and it seems to be keeping me pregnant for now, they’re going to keep me on it.

 

Hospital 2: Expect nothing

Second entry in the journal I kept while in the hospital:

..."What the hell is going on?" - Mike Kennedy

Friday, June 12

What is going on: the drugs seem to have worked. I am on antibiotics, magnesium sulfate, and another oral medication (Indicin) to stop the contractions, which have spread out from every 1-2 minutes to every 15 minutes or so. I’ve been told that I could be here for weeks with a baseline of contractions without labor progressing. Either way, I’ll be here, if all goes well, for 7 weeks or more. That’s the best-case scenario. We want to make it to 32 weeks at least. So, that means around two months of hospital bed rest. It’s a brave new world for the Kennedys.

The outlook for a 25 week-old fetus is not great. Add a C-Cam (lung abnormality) to the equation and things look bleak for Mr. A. Not hopeless. Just very difficult. But, at this point, I have come to accept that ‘difficult’ is just my lot in life. When pregnant, make no plans. Expect nothing specific. That’s the wisdom I have garnered.

Hospital 1: But I Feel Fine

I have not posted in awhile because I was in the hospital for two weeks (the first to stop labor, the second to deliver our twins and recover from a c-section) where I had no internet service. I did keep a journal and will be posting it in sections.

BUT I FEEL FINE: Sunday, June 14, 2009

Thursday (now three days ago) seemed pretty usual. I woke up without issue, got on the train, and headed to Children’s Hospital for my weekly ultrasound to monitor Mr. A’s lung lesion. Though the news on this front had not been great as of late, I was prepared for whatever the doctors were going to tell me. Except this: at 25 weeks gestation, I was in labor. Well, they didn’t use the word ‘labor’. But, I had a backache, my cervix was very thin, and I was having painless contractions that I hadn’t thought much of. Collectively, that would be labor.

I didn’t get it at first. The message seemed murky, even cloaked in positivity. Children’s Hospital was sending me across town to Pennsylvania Hospital with a packet of ultrasound reports to “be evaluated”. I responded with, “Okay. I’m going to get a bite to eat and then I guess I’ll take the train down there later.”  Um, no. Within ten minutes I was in a cab (with an empty stomach) on my way, not to be evaluated as it turned out, but to have my labor stopped. This is not how it was supposed to happen for me. I was supposed to be the one who carried to term.

Here’s how it unraveled in short order. I was admitted. Mike left work and rushed to meet me. A monitor for each fetus and one for my contractions were strapped to my belly. An IV was put in my arm. That seemed normal enough. But, I still didn’t quite realize how serious the situation was, not even with nurse after nurse looking at my read-out and saying, “Wow, you’re contracting like crazy!” This was about 11 am.  By noon, they had me on an IV drip of magnesium sulfate to stop the contractions long enough to give me a course of steroids (to hasten fetal lung development) and I was moved from triage to labor and delivery. Still, I was pretty calm. I figured, these are normal, preventative measures… right?

By about six o’clock, the pain really set in. A doctor came to evaluate my cervix and that’s when I realized what was really going on. As the words, “two centimeters dialated” were uttered-- it hit me. These kids were on their way out. When Mike, who had been in the hallway for a few minutes on the phone, stepped back into the room, I was in tears as a team of nurses strapped, poked, stuffed, and manipulated me with everything medical, and our OBGYN rambled on about a C-Section. As Mike so aptly asked, “What the hell is going on?

 

Month Six

It's hard to believe that a) this is actually happening and b) it's happening so fast. Six months ago, Mr. A and Mr. B were jokingly referred to as Nick Knack, an imaginary baby that no one believed would actually come into being. Yet here I sit, 30lbs heavier,  gradually becoming completely immobile, incubating two future people made from half my genetics.

I am not immune to vanity and two things are preoccupying  my mirror-mirror. First, my legs are developing a bluish hue which, upon closer inspection, are revealed to be a dense map of spider and vericose veins. I like to think that I'll have this unsightly mess "taken care of" once de-childed. But, if I can't afford the simplest of luxuries now, it's clear I'll never have the dough to zap my legs pretty later on. Second, though I have thankfully avoided getting stretch marks up to this point, they are undoubtedly on the way. Even if they are mild, I can't imagine the disaster that will become my belly once I am no longer pregnant. Spongy, saggy, deflated... you get the picture. Does it ever go back to "normal" after twins? I'm pretty sure this extra skin cannot be zapped with the same ease as spider veins. Shorts and bikinis never again. Oh well.

Kid A

No matter how they try to brighten things up, children's hospitals are depressing places. You look around at all the kids, some look fine, some are clearly broken and there for fixing. And then the rest are there because their brother or sister is broken.

Today, when I went for my weekly ultrasound, I saw three things at Children's Hospital that were profoundly sad, things that seemed like omens given why I was there. First, as I was walking through one of the many glass-walled corridors on my long walk through the hospital to my doctor's office, I caught a glimpse of a teenager in a bed, surrounded by machines and tubes, his mother sitting nearby reading a book. From the door leading to that ward walked a little girl, maybe 5, balding with wisps of white hair, wearing a surgical mask. Clearly, this is where kids go for chemo.

Later, an elevator door opened to a packed car. In the center, a woman with employee badges stared ahead into nothingness, one tear dripping from her left eye. No puffy red cheeks. No sobbing. Just a tear on an otherwise stoic face. I wondered what she had just seen.

So, when my doctor delivered some unsettling news, that the mass in Mr. A's chest had grown faster than he did, past the ratio that sets off alarms, I was saddened, but not heartbroken. Because he's hidden beneath my abdomen, I don't have to watch him suffer the way all the other parents in that hospital do with their diseased children. That mom with the teenager and the parents of the five year old and the employee in the elevator have to look at sick kids and feel a far more palpable helplessness than I. For now.

Mr. A is going to need surgery. I will at some point be that mom sitting bedside watching my kid suffer. Hopefully, it will be just once, with just one kid. Hopefully, Mr. A will stabilize and stay inside long enough to grow enough lung tissue to be able to breath once he is born. Hopefully, he will not be born before 32 weeks. 

Changes

Every major turning point in my pregnancy has been sudden. No gradual shifts. Just big, bold changes. By the time I could really feel a kick, the kicking was non-stop. Two days ago, I saw the kick. My whole belly jumped. Now, it's like snakes under my skin-- and they're only a foot long and a pound and a half. I can't imagine how surreal it will be when they are big. I've been told that I will be able to count toes through my skin. I'm hoping for twenty.

The Question

Swiss cheese. That's what my unborn kid's chest looks like. Today we went for our second of many weekly sonograms to keep tabs on his lung cysts and, even to the untrained eye, the multitude of negative spaces populating his chest cavity are terrifying. But, the doctor reassured us that this was to be expected. These things get worse before they get better. Totally reassuring, doc. I'm left feeling completely at ease. Um, no...

But, his heart still beats. His brother has spun around so that they are face to face. I'd like to think this was on purpose, to lend some comfort. Seeing that they are now both head down explains a lot of the aching I've been feeling in my lower pelvis for the past few days. One mystery explained.

I try not to be scared. What would be the point? There's nothing I can do about it. Just wait and see. Trust the doctors. Go to my appointments. Hope for the best. Put it out of my mind and focus on other things. But, it's always there, looming. The question. What if it all goes horribly wrong?

Battle Royale

The mass in Mr. A's chest is pretty big. After only a couple of hours of ultrasound observation, even I could look at the squirmer being examined and see that something was awfully wrong with his chest. Large black holes orbit his heart. The technician marked the outline of one and typed, "Largest cyst, 1 cm". Largest. Meaning there are more. 

After eight hours of testing and waiting, a platoon of white coats sat us down to explain that the mass-to-baby ration is within the "don't panic just yet" zone- 1.2. At 1.6, we panic. So, he's got some time to cook before we'll really know what we're dealing with. One thing is most certain- the boy can kick.

Mr. B, the quiet one, has just started to make his presence known in my womb. He is feet down (breech). So, you an imagine where he might be kicking. Sometimes, it's my bladder. Sometimes my colon or, even more tickley, my cervix. The MRI tech referred to the spectacle within me as a "battle royale". Lots of sibling rivalry. We are going to need a much bigger house.

The scientist

I've always thought of myself as having a scientific perspective on life and why it is the way it is. Gather information, test hypothesis, make conclusions. My way of dealing with crisis might come across as cold to some people. But, it's really because I want to understand the problem, consider the possibilities, attempt solutions, and be in charge or my own fate. Nothing is inevitable, just probable or improbable.

So, I have been reserving judgement on our situation until tomorrow, when the tests and expert advice show preference toward one conclusion above all others. Yet, I can't help but to have expectations. It's a dangerous beginning for a scientist, to prefer one particular outcome, because the reality is sure to not align with my desire. I expect that there will be a "wait and see, low likelihood of danger" prognosis, which of course means that I am not prepared for the other possibilities.

Several times, Mike has mentioned that he wishes he believed in some higher power right now, something to divert his fear about losing our babies and make him have faith that things happen for a reason. I think that, if I did believe in god, this might be the point at which I stop believing. I mean, what god would do something like that? What would be the reason? It wouldn't make me stronger or teach me any important lesson or give me some sublime insight into the workings of the universe. It would simply make me hate god, and I'm pretty sure that's not what the great intelligent designer would be going for.

No. It's all numbers. We just happen to be on the light side of probability at the moment.

Welcome to the Terrordome

Week 20 anatomy scan. It's a concise way of saying "the ultrasound where you get a good look at your 5 month old fetus". Or, in our case, the day you realize that having babies can be utterly terrifying. Two very unexpected things were discovered in our scan two days ago.

 1) we are having IDENTICAL BOYS. We had been told in our first ultrasound that they each had their own placenta and were, therefore, most likely fraternal. Now, we know that they share a placenta - a situation that brings its own set of potential complications - and that they are identical. More importantly, they are both boys. Man, are we screwed.

2) one of the twins has a very serious developmental problem- cysts in a lung. There are a lot of things that can go wrong here, especially because right next to the sick fetus is a perfectly healthy one whose outcome might be compromised should the sick one get sicker. Primarily, the concern is that the cyst will get bigger and push on the heart until it can no longer beat. In the one of several worst case scenarios, they will operate to remove the tissue in utero.  That's right-- inside of me. Again, the fact that the two babes share a placenta makes this extremely complicated.

We are being referred to Children's Hospital here in Philadelphia for a battery of tests and meetings with every possible kind of fetal, neonatal, and pediatric specialist. It is, so we have come to understand, the best facility in the country to treat this rare disease. In just about every instance where there has been a probability quoted, like 1 in 250 (the chances of having identical twins) or 1 in 30,000 (the likelihood of this cyst problem), we have been that one. The only lucky improbability is that we happen to live in the city in which the best possible place to get treatment is located.  We are, much thanks to good insurance, about to enter the world of ultra-modern (and ultra-expensive) medicine. 

I started this blog to talk about some of the realities of having twins, minus the delicate sugar coating with which so many books and websites patina the subject. So, here you go. Welcome to the Terrordome.

The Mirror

Sometimes I forget that I am pregnant. From my perspective, looking down, my belly does not seem that big. It just seems like I have been drinking too much beer.  Then, I catch a reflection of myself and realize how unmistakenly knocked up I really am. Other mornings, I wake up and roll out of bed thinking it's just another day. Then I see my naked, bulging self in the mirror and think, "Oh, yeah, right. I've got two people in me." Not an average day for anyone.

Two. One for each tit. One for each arm. One for AM, one for PM. One for good, one for bad. The question is, will there be two of us to take care of them? Sometimes, you take a step back and look at your life only to discover that it is not what you had expected it to be. I'm a daughter of the Womens' Lib movement, a 70's girl who was raised to resist the feminine and avoid the pitfalls of my mother's generation. Yet, when I assess my situation, I realize that I do almost all the cooking, absolutely all the cleaning, all the laundry, and all other things domestic in my home while running a custom cabinet business- more than a full time job. We really have made no progress.

If my sixteen year old self could have seen a picture of me right now, she probably would have committed suicide.

 

Kicking, not yet screaming

Yesterday, we felt it for the first time. As we sat in the cold watching the Phillies lose to the Nationals, a hard little bump formed just below my rib cage. A foot? A hand? It lasted a minute and then went away.

I've been feeling them on the inside for a couple of days now. Today, I can feel the one on top (medically referred to as Baby B) making little jabs at the same spot. Very active kid. Mike thinks it's a boy. The one on the bottom is harder to feel through my belly. But, at band practice the other night, it (she?) was moving around quite a bit, dancing or perhaps really annoyed.

Very exciting. You go through all this crap that makes pregnancy seem like just a long series of calamities. Then, you start to feel that they are alive and it makes all the bloating and heartburn not so bad. I am starting to feel that the worst of babydom is probably not so bad either.

A lesson in the magic of hormones

There is no shortage of fascinating changes occurring in the pregnant body. One that, despite the warnings in the books, I was not quite prepared for is how much my gums bleed. I mean, gush like I just stepped out of an ultimate fighting ring. And, I kind of have to floss because my gums get cranky and will bleed even if I don't touch them. I went through a quart of Listerine in a month, trying to rinse that ferrous taste from my mouth.

Here's why it happens : all the extra hormones loosen the membranes and the muscles in the body. It makes sense. You're stretching. You're adding blood and other fluids. All that needs somewhere to go. Your blood vessels, lungs, and abdominal muscles need to be able to expand quickly. Thank you hormones for making this possible.

On the downside, some tissue that does not need to expand does. That would be your gums. Oh, and yeah- there's also all that extra blood in your body. Good luck with that.

It's all in the legs

Gravity... the arch enemy of the pregnant woman.  As skinny as I have been my whole life, I have not avoided the leg swelling made famous by gestation. Do other mammals swell like humans when pregnant? I can't imagine what it feels like to be a knocked up horse. They sleep standing up.

Basically, we women with child have a whole lot more blood than our former selves- about twice as much by the time the child is done with us. And, as you might imagine, most of that finds its way to our lower limbs as the day goes on. Thus, the kankles, the spider veins, the cramping, etc..

I'm still working (building cabinets). I have about three good hours in the morning before I feel totally exhausted and my feet start throbbing, regardless of what I'm working on. Surprisingly, I'm more mobile than I was a few weeks ago, probably because the uterus moves up and out, allowing for less crowding in the lower abdomen. Nonetheless, bending over is literally a pain. Sometimes, I feel like gravity is conspiring against me, slyly pushing writing implements to the floor so that I have to double over for a mere pencil.

Crystal Balls

Undoubtedly, now that we are sure that the uterus does not wander and that orgasms are not just between a crazy woman and her doctor, it's safe to proclaim that books on female reproductive health are fairly accurate these days. In fact, our species knows so much about the subject, reading one of these books is a lot like going to see a psychic. Every week is laid out for you in extreme, clairvoyant detail. You will feel sick this week, crampy the next, and great three weeks later. On this day, you shall feel a kick, find out the gender, experience this or that profound feeling. It's both comforting and totally creepy. Why doesn't this kind of book exist for adolescence?

Then, there are the real psychics- moms. I recently ran into a friend of mine as she was out walking her dog and her one month old girl. She gleefully, I dare say even sadistically, said, "It's really, really, really hard. Harder than you think it will be. You've got two. I feel sorry for you."

Hmm. I haven't imagined that first month being especially easy. I'd like to think that I have a pretty clear picture of it: me, half asleep, reclined on a mound of pillows in bed trying to get two screaming infants to latch on at the same time. Later: me, almost totally asleep, tandem diaper changing, laying the little guys in their crib, cranking some Steve Reich on the iPod, then putting in some ear plugs so I can do what my body is telling me to do.

But, the psychic is telling me that I have it all wrong. She has said that there will be no more me. I will devolve into a blithering, incomprehensible mess of womb-man, incapable of controlling the situation nor defining the terms- a mindless being with shattered crystal balls.

The book doesn't tell us this part. It talks about the labor, the post-partum blues, the recovery, positions for breastfeeding. Nowhere does it say that I will be destroyed by this. At this part of the story, the book that has been so accurate gets very foggy.

The Honeymoon

Firmly in my second trimester, I find pregnancy to be a little less annoying. Well, except that my belly is growing exponentially, I feel like I'm going to herniate something every time I bend over, my legs are turning into spider-veined sausages, and I am still terrified when I envision my future life.

Sometimes, I find myself already in love with Nick and Nack, imagining cuddling them as infants and making claymation movies with them when they are kidnergarteners. I see all the good things to come. 

Then, I feel a swell of panic as the reality of parenting consumes my pretty dreams. C section. A hundred and forty diapers a week. No sleep for a year. A house full of toys. Disney movies. Bullies. Boring as shit T Ball games. Ballet recitals. College funds. Or, maybe none of the above. Maybe Ritalin, expulsion from school, drug habits, prison visits. Perhaps both, as I have two imaginary futures to consider.

I have no idea what I am doing. This seemed like a good idea. Now I just feel in way over my head.

Week 13

Much of the unpleasantness of the early weeks is gone. Now, I just feel fat. I've gained 10 pounds, a bit much for 13 weeks, even for twins. But, I still fit into my old clothes. Not sure where all the weight is going, though I am starting to suspect that much of it is in my aching feet.

A little bit about "happiness":

People expect pregnant couples to automatically be elated. Some people are even insulted if you dither from that prescribed course. If you show your fear, if you express some hesitation (even though there's obviously no going back), you're a bad parent or you're an idiot for doing this in the first place. Let me tell you, if those people are parents, they are liars- of not to you, then to themselves. This is the most permanent thing two people can do together (other than murder someone). Mike and I have never done this before and I'm not going to apologize for saying out loud that I'm unsure how this will turn out and that makes me afraid. 

Anxiety is a normal part of pregnancy. If you spend nine months gestating another life without a hint of worry, you are willfully ignorant. Unfortunately, emotions like anxiety and fear can mask or muddy feelings of happiness or excitement. In some ways, being pregnant is like getting ready for the SAT. The ultimate goal is to get into a good college. But, in order to do that, you have to go through this hellish, ulcer-inducing process that pits you against unknown equations. You can read the books and take the classes, but it will be a long time until you can step back and say that you did the right thing and you made the right choices. 

What have I done?

I am certain that, early in every pregnancy, there is a moment when mom and dad must stop to ask themselves, "What have we done?", probably followed by, "Why did we do this?" I have finally reached that point. Mike had his moment very early on and then repeated it in the ultrasound room. My split second of regret hid deep inside, percolated, waited to catch me off guard. I just yesterday found myself staring at my bloated belly in the mirror, realizing that there are to people in there, thinking to myself, "What have I done?"

Ch-ch-ch-changes

I noticed today that my abdomen is changing. Not just getting bigger or pudgier. It's changing shape. My belly button is starting to push out and the area around it is swelling. I've put on about 5-6 pound so far. About right for twins. But, as a woman who has been a consistent size and shape for 15 years, it's very strange. I can see how women start to feel fat when they are pregnant, even if it's not really fat that they are gaining.

Examples of unpleasant things that are now a normal part of my life:

I itch all over- all the time. A histamine problem, perhaps caused by new hormone levels. My legs itch, my elbows itch, my tits itch, my crotch itches. I catch myself sometimes scratching my boobs in the grocery store. People probably think I'm homeless and crazy.

I have gotten a cold sore every three weeks. This was something that I had hoped pregnancy would somehow fix, not make worse. I look like my husband has been "showing me how it's gonna be around here from now on", what with all the scabs on my lips. Perhaps I'll start to spontaneously bruise just to add effect. It wouldn't surprise me if that's another perk of pregnancy.

I have a "gestational rash" on my rib cage. There are four kinds, all non-life-threatening. One of them is gender specific (the baby, not the gestator). I'm probably going to have boys. Damn it.

When I get even a little bit cold, my nipples really, really hurt. No amount of padding can hide this very 1980's symptom of chilliness. They are pointy for all to see.

Not to make too big a deal of it, because I already mentioned this, but it can not be understated how much gas I emit.

Sex life? Ha ha ha ha ha ha ha. I'm an incubator now. No man can look at his woman's lower abdomen, knowing that there are his babies in there, and think, " I want to fuck that". Both sides of the equation may want to do it, but actually doing it is really not that appealing. Hormones make me disinterested (why do it, when the goal has already been met?). I'm also asleep by seven PM. Alternative methods? The thought of jamming something that isn't food in my mouth is... nauseating. The subject of cunolingus has not come up, leading me to believe that thoughts like "hello, who's in there?" might be distracting to my man. Though every book and expert says an orgasm won't hurt those little guys, it's tough for me to be feel okay masturbating. After all, it's like causing an earthquake in their tiny world. What if it shakes them loose?

It's a gas

I never knew I could fart so much, or for so long. I have always been a flatulent girl. But, pregnancy has unleashed a new superpower. I can now lay out monumental, euphonic toots that ought to win me awards. And no, they do not smell like baby powder.

This is, so the books tell me, normal. So many disgusting things are now normal. From what I understand, there is still a plethora of bodily malfunctions yet to come. No wonder we pregsters feel so darn unsexy.

Twins, twins, and more twins

I have two friends who are also pregnant, both about three weeks ahead of me. Kelly, who never really planned on having children, and Bridget, who wants a big family and is jealous of my doubleness. 

Saturday night, my hubs Mike and I met up with Kelly and her hubs for dinner. They were still adjusting, they said. As Mike and I told the story of our ultrasound and talked about how having two was going to change our plans, it's doubtful that they had any notion whatsoever that they were also pregnant with twins. Yeah. Crazy. They had that same ultrasound experience today. What are the chances that two former college roommates who work together could double knock up their wives at the same time? I smell a screenplay.

Now we wait for Bridget, whose ultrasound is around the corner. By god, if she has twins, I'm calling Fox news.

AN INTRODUCTION

Something happened Monday that completely changed our game. We already knew we were pregnant. The basic blood-work and pee tests were normal.  But, we were getting an early ultrasound at nine weeks instead of the usual twelve because of a persistent pain near one of my ovaries. As soon as the technician put the trasnducer on my lubed, still flat belly, we knew something was awry.

They were like googly-eyes, two shiny globes with dense white balls at the bottom. She moved the transducer around, claiming that she was looking for the ovaries, but clearly stalling. I know what ovaries look like and this wasn't it. The same image kept coming back on the screen: two watery bulbs containing fuzzy nuts. I thought, this must be a difficult part of her job, delivering news like this. Finally, she found a tactful way to break it to us, "So, who has a history of twins in their family?"

It's Thursday. I'm at home painting the living room, preparing to sell our tiny house a lot sooner than we had planned. Someone else probably ought to be doing the painting. But, there is no one else. I feel the pressure of accelerating time, a coil of days and weeks that constricts my chest and makes my breaths short. Officially, we are due September 23, seven months from now. But, twins alter the time line. I could be put on bed rest for months. They could come very early. Everything has to be done right now.

This blog is about what really happens to two self-interested urbanites when they discover that they are having two babies instead of one. It's about a pair of thirty-somethings used to having a lot of personal space as they prepare to share their 950 square foot home with a Lab, an active cat, and two infants.

There will be no sentimental waxing about the beauty of creating life. I won't be referring to my fetuses as "little miracles" or "double blessings".  If you are put off by the graphic details of a pregnant woman's anatomy, find another blog. If you are looking for reassurance as you try to cope with your own surprise, find another blog. If this all sounds extremely entertaining, read on...