Better Make It A Double

bliss?

The word People Magazine used on its weekly cover to describe Jennifer Lopez’s first months with twins is “bliss”. Aaah, brings back memories, doesn’t it?

Well, no.  Somehow that doesn’t quite describe my experience. Was there something wrong with me? Her twins are awfully cute, but so were mine, even without celebrity stock. On the other hand, I didn’t have to explain my weight gain to millions (actually, in my case there was a net loss of about 20 pounds, which was not a good thing), and wear heels through the whole thing. Still, this kind of thing honestly drives me a batty, because celebrity or no, it feeds into the unrealistic attitude people have about twins, especially baby twins. Having twins has many blessings, it really does, but not usually the ones people seem to think it does (I'm still not sold on the idea that it's efficient to do everything twice but poorly and distractedly) and yet there are some great things about having twins that aren’t always obvious. But the two infants at once part? Well, as far as I’m concerned, there’s nothing really blissful about that. It’s really hard to feel torn in two, to have one baby crying because you are tending to, his twin, to have one wake up just as the other is finally asleep and resent the hell out of it, to have your veins course an ever steady river of guilt. That’s how it felt to me, at least. Really bonding took some time, and I only knew it had really happened when they started sleeping enough and being on regular enough of a routine that things were a little more relaxed. Thankfully, they did turn out to be good sleepers—two hour naps at the same time, now that was bliss. When I wasn’t quite so busy and sleep-deprived I could really get to know their individual quirks, have more little games and know ways of holding them that were particular to each baby, have the good, constant back-and-forth dance that makes for good bonding with a baby. The first three months or so were baby triage, and baby triage is not bliss.

The attention twinfants get you wasn’t any kind of bliss either – I personally hated that most of the time (though I’ve met twin moms who loved it.) The attention so often seemed to go like this:

Me: lonely as heck, desperate for conversation. Female twin fan: Friendly at first, but only because she wants to gape with her face and hands too close to my preemie twins,/ Then she starts to make inaccurate or ridiculous statements to the assembling crowd, doesn’t say boo to me again, not even to acknowledge my correction of statements like “There’s always a troublemaker with twins” or “He’s the happy one, I can tell.” I actually had visions of ramming my Peg Perego double-stroller-with-the-carseats into their knees on occasion, and I’m a pacifist. If they did say anything else to me, it was to tell me in one form or another that my current lot in life must suck, which, while that felt a tiny bit true on some days, was not helpful. Somehow, call me picky and hormonal, I didn’t really enjoy hearing how much they wished they had twins either.

Later, as multiples get older, people comment less, it seems less impossible to people, and thereby less fascinating, yet, it is then that having twins becomes particularly fun. The comment I most often get these days is “Wow, that must’ve been hard when they were babies”. My response is always the same honest answer: “Yes it was, but it’s a lot of fun now, and there are some advantages too.” I know that having your kids one at a time is ultimately easier on your sanity, not to mention less risky, but I can’t help but feel that I am reaping some rewards for having put forth a tremendous amount of effort on the front end.  The best parts of having twins are still happening. Partly this is because we really are done with the baby-making part of life, and since I’m really at peace with that, it’s easy to appreciate the advantages. (And these things still eventually apply to moms who do have another singleton, because they do all that twice instead of three times.) OK, so every mistake I make I get to make twice, but when the really difficult, or just even mundane stages pass, they’re gone. No starting all over again just as it gets easier, no starting all over with diapers again. As most of my friends are still getting up all night, we sleep through. We’re done with daytime diapers. They use their own hands to feed themselves, and get in and out of their own car seats. We have tantrums, but they are eventually followed by intelligible words. They tell us they love us.

There is much to like about the companionable way two and three year old twins can fill your life. The boys really are best buddies now. They interact as much with each other as with us, mostly very happily, and they’re always roping us into their fun. Because they’re exactly the same age, the house is more or less set up for both of them, as are our days. Whenever we figure out where they’re going to preschool, they’ll go together, same schedule, same days, no baby’s nap schedule to worry about, the house actually cleared of children for a few hours each week. This scheduling advantage will probably be true for much of their childhood, though I’m sure there will be exceptions.

I’m still not sure “bliss” is the right word for motherhood of twins or singletons, at least not as a catch-all describing the entire experience. There are certainly blissful moments though. Blissful when I realize that I really know both of them as individuals. Blissful is seeing them look out for each other, even knowing that sometimes their solidarity comes at my expense. Blissful is where I see evidence of their love for us and one another, when they take my breath away with their love of language and their humor, when I get great big hugs and messy kisses after coming home from work along with an “I missed you, Mama”. Bliss is knowing I really missed them too, because there were times that I didn’t, where part-time work saved my sanity because I was so overwhelmed (the age of 18 months comes to memory.)  This is still not an easy age, and we still have bad days, but I think I’m having more fun with my twins at just about three than I ever have.

When I run into moms with infant twins who seem approachable (and often when I have my boys with me, at the zoo or someplace, they approach me), I say this:

Your twins are gorgeous. Isn’t it tough on the parents in the beginning?  It gets so much easier, and  so much more fun.

 

 

lucky

My twin pregnancy was scary and difficult, but we had a very good outcome, making it to 35 weeks after 13.5 weeks of bed rest, 7 of those in the hospital. After the birth, I had some pretty hard-to-live-with post partum anxiety. I had a lot of trouble sleeping, and I was hyper-alert alert all the time. Unpredictable noise agitated me greatly, and I had a preoccupying fear of accidentally waking the boys when they were finally sleep. It was pretty awful, and a therapist later diagnosed it as mild PTSD from the stress of the pregnancy combined with PPA (post partum anxiety).

 It took many months to come to terms with all that, for the anxiety to lift and to be able to relax. It was during this time that I started this blog. Therapy helped a lot. It took longer just to grieve all of it, the infertility, the very sudden loss of a normal life, the fear for my boys’ lives. I can safely say I’ve done it; that I’m pretty much at peace with all of it. It was so hard to imagine ever being at peace with it, but here I am. I am at peace with being a family of four, and the word “infertile” no longer causes me pain. I am OK with the fact that I didn’t have the pregnancy experience I’d hoped for. I believe that save for a difficult stage here and there, things should only get better from here.

 What I didn’t have the clarity to realize until recently, (and this was brought home again today when I read this) was that I was so very lucky to have been on bed rest for all of 13.5 weeks. It’s the people who are “only” on bed rest for a much shorter period of time whose kids were born months early, their very survival a daily question. Every day on bed rest brought us closer to the shore, closer to survival, then to more certainty, then to a week shy of full-term for twins. This is a new way for me to think about my experience. Yes, it was hard, but how very lucky I was to have all of those 13.5 weeks with my babies still inside me. I am finally ready to be grateful not only for the outcome (for  which I’ve never been less than utterly grateful) but also to really appreciate what got me there. I received good care in an imperfect system. I had the economic resources to worry more about my kids than about the bills. I had the loving support of both sides of the family, two churches, and many friends. My kids are fine, wonderful.

People used to tell me, when the boys were babies, how lucky we were that they were OK. I wasn’t ready to hear it, and the very word grated on me – I resented the fact that only the people who deal with real hardship ever seem to get told that. I wouldn't say that to someone like me, even if it was true; I wouldn't expect anyone who has recently dealt with any type of scare or difficulty with their children to embrace their good fortune.

They were ultimately right though; we were and are lucky.

Alexa’s premature girl Simone is recovering from surgery on her tiny body, and she’s had a very rocky few days, though things appear to be looking up. Simone’s twin brother died in utero for unknown reasons.

My comment to Alexa today:

I’m sorry for the loss of your boy, and hope that the rest of Simone’s time in the NICU is progressively less bumpy. You are clearly a great and devoted mother, and hopefully there will soon be a time when all the damned wires and machines and fluorescent lights go away, and it is just the two of you, rocking in the dark, needing only each other.

breathing movements

It is 1998, a month into the new year, and am walking in cold February air, past brownstones and wrought iron fences, across stiff snow and hard concrete, air dry as paper, balancing myself across patches of ice. I can see my breath pluming in front of me, the plume separating in two as I walk through it. There is a beast at my throat, constricting my windpipe, every breath out is a huh, huh, a deep push to get the old air out before the new rushes in to fill my needy lungs, also dry as paper. I put one glove in my left hand, my other hand fumbling in my right jacket pocket for my little magic puffer, the one that will cast off the beast at my neck, send him fleeing into the cold bright air, let the air rush back into my grateful lungs, move back into my bloodstream, feed my brain and release the growing sense of panic. I stand in a borrowed doorway to do the puffing—laugh to myself that I’m doing drugs in a doorway—and realize I am dizzy for lack of the proper amount of oxygen. I  sit on the step for minute until I am so cold that my coat is a cloak of stiff, frozen fabric, and resume my walk home, home to my cozy little 1920’s one-bedroom, my two cats, waiting homework and paperwork for my business. By the end of two blocks, the beast is mostly forgotten. By the time I walk up the steps, then the two stories to my door, I am thinking of dinner with my boyfriend that evening, a phone call to return, a checkbook to balance.

In that year, my body seemed to be attacking itself, and actually, it was, with an overly defensive immune system that was, for unknown reasons, on constant, exhausting guard against invisible enemies. The asthma had begun, rather cruelly, when I quit smoking the year before. Endometriosis, as yet undiagnosed, gave me a constant, intimate awareness of the exact outline of my uterus, fallopian tubes, and ovaries. I envisioned little demons with tiny sharp claws, scraping angrily along my insides. Periods left me in a deep fog of alternating sharp and dull pain, a day or two every month of painkillers, heating pads, and bed. I couldn’t breathe well, and had an especially hard time around perfumes and chemicals. My thrice weekly trips to the Y kept my back injury pain mostly under control back then, but I was a bit frightened at how awful I so often felt. As I lay down at night to sleep, I’d be unable to relax into the deep breaths of slumber, realizing that the shallow and quick breaths I’d gotten used to during the day were a barrier to deep sleep. Puff puff, feel the heart race with albuterol jitters, read another chapter or two, try again.

The boyfriend and I married in 2000, and I finally got pregnant and stayed that way in the summer of 2004, with twins.  Though it was a rocky and frightening pregnancy, within a few weeks of our IVF transfer, it felt as if my lungs were also growing, opening up from the inside out along with my belly. Air rushed in and came right back out in the fairly effortless rhythm it ought to be when one is at rest. I was apparently in the lucky minority of women with asthma whose symptoms disappear entirely during pregnancy. And while I could feel my uterus grow and stretch, contort and contract as my front extended further and further out from my center, I could also feel the wounds of endometriosis it contained begin to heal. My boys are almost three now, and the pain is nowhere near where it was. Neither is the asthma. Pregnancy would seem to have been a reset button for my faulty immune system, my body’s insistence that it was being attacked when it was not. My last best hope short of a hysterectomy contained two beautiful healthy boys and my body’s ability to relearn how to heal itself a little, at least for now.

Both of those boys were born a bit early, bird-like in their beauty, still full of intrauterine twitches and reflexes, curled up in defense against a too noisy, too bright, too big world. They nestled up like larva on my flaccid postpartum belly, connected to beeping machines and lights, reminding me of high school science experiments involving electrical wires and russet potatoes. When not in their isollettes or in their beaming father’s arms, they were often curled up on the outside of my belly, their discomforts betraying their longing to be back inside if it, to be swimming in the crowded murk of fluid and cord, their limbs contained, their need to breathe limited only to early practice movements caught on ultrasounds. Those early breathing movements, viewed on ultrasound to our great relief as early as 32 or 33 weeks gestation, may have come partly due to the steroids I received at exactly 24 weeks to speed up the development of their immature lungs in case they came as early as it was feared, even predicted they would.

It was actually N who worried us most after the birth at 35 weeks exactly. He was a half pound smaller at 4 11’, and he looked ever much more the tiny bird preemie, oddly wise and old-mannish, occasionally opening his cobalt eyes wide in seeming disbelief. He had some feeding issues that turned into a sepsis scare, fairly standard stuff in the preemie shuffle, but scary nonetheless. The issues resolved, and he was officially discharged a few days after his brother was. We all went home together with no wires or machines trailing us; nothing but a little bottle of Zantac for N and some car seat bolsters adding to the usual baby detritus.

O had round little cheeks for a preemie, and a fair bit of early chub. By his due date, he was as round as the letter that begins his name, round as an olive, with big rosy cheeks and chubby little leg rolls that delighted me every time I unwrapped him like a present to change a diaper. My body did this, was doing this with my milk flowing into him and transforming, as if by magic, into muscle, bone, and baby fat, smiles, cries, and big lungs full of air.

But it was O who had a meningitis scare five months later, an ear infection that infected the lining of his brain and might have killed him if he hadn’t gotten antibiotics quickly enough. It was O with the croup all last winter, with the wheezing, with the all-too-frequent colds and the cough that would linger for an extra week or two after. It is O who just finished up his third course of prednisone since his birth and who now has a twice daily appointment with the nebulizer. When we agreed to this course of treatment, we hoped that a preventative medication would keep him off the hard drugs and avoid the visits to Urgent Care and future overnight hospital stays.

Since O was about 15 months old, I’ve had a nagging feeling about his gross motor skills. He walked soon enough, but awkwardly, and his balance wasn’t great even for a toddler, though he could scale playground equipment with an agility and determinedness that scares me even now. He didn’t really run until he was over two, and even then, it seemed to be with great effort at actually lifting all the appropriate limbs in the air at once. He was evaluated for a gross motor delay at 22 months, and he passed, but not by much. Quit worrying, said my mom, J’s mom, our pediatrician, J, and me to myself. I am a worrier, and I bristled at the idea of being one of those parents –the kind that needs her kids to be good at everything.  But as I watched O’s uneven skills develop, watched him struggle to run and ask to sit a while as we went for hikes and his brother ran in impatient circles around him, I have continued to worry.

He’s been on the new meds for about a month, and the cough that lingered far too long is gone. A couple of weeks ago, I also started to notice other changes, a lightness in his body that I’ve never seen before. He’s running, and getting real air underneath him as he moves, his face full of the joy of movement for the first time. He’s got more sustained energy, the kind with stamina and not just physical strength. His newly official diagnosis of asthma has been with him more severely and for longer than we’d known. All those things that worried me are sorting themselves out before my eyes, as air rushes in and comes right back out in the fairly effortless rhythm it ought to be.

I looked through my hard drive files the other day, and saw picture after picture of O trying to catch up to his brother, a yard or two behind him. One of his first non-noun words was “wait!” We missed it. We missed this. We did our best, our pediatrician did her best, and we couldn’t even have started him on the Pulm*cort before he was two, but we missed it, something that makes so much sense as I flip through those pictures, and I am filled with a crazy-making mix of sadness and validation. But mostly, I am happy the kid can finally breathe, and still hopeful that he’ll grow out of it yet.

Yet, I can no longer say that while the price to have our children was high, the boys are at least unscathed by the experience. At least one of them is quite likely not, and we may never know for certain how either of them was affected by all the medications they were party to in utero or their prematurity. The rate of asthma is higher in all preemies, even those born only a few weeks early.

I’m not sure why NICU doctors and nurses are so bent on telling parents of “older preemies” that their kids are just like any other kids when a growing body of research contradicts that notion. Perhaps it is because these kids do so well in general, because minor learning difficulties, attention issues, asthma, and the like are nothing compared to what earlier preemies and their families have to contend with. I don’t suppose there’s a whole lot to be gained by a pediatrician telling a parent that her child’s issues may be connected to that child’s prematurity where there’s absolutely nothing that can be done about that and the prematurity itself doesn’t affect the treatment plan.

Last night, after I spent a solid two hours scanning the pictures on my hard drive, I tried to sleep and instead scanned the pictures in my head. I remembered O’s birth, baby B stuck sunny-side-up in the birth canal in a complete split, one leg up by his face and the other trailing behind him. His heart rate was too low for too long, and there was a lot of tension in the final moments before his release from me, a slippery, floppy fish whose eventual cry was an angel chorus of relief to all of us.

I also imagined that silent air-robbing beast flowing out from me with him, released from me and into him, a legacy of my body’s betrayal that would remain silent for many months yet. I know O's asthma didn't happen that way, i know that it isn't anyone's fault including my own, that probably nothing could have prevented it. It isn't guilt I feel so much as a sense that it isn't supposed to happen this way—my own burden being released from me a short time before it descends, unbidden upon my son, for whom I would gladly take it on. I am mourning this now, this unwanted validation, this proof, even as I wait, in this season of advent, for a fuller knowledge of all the types of healing and hope that are possible. Even as I also scan in my mind a picture of a smiling round-faced blond boy running neck-and-neck down the sidewalk with his brother in snow boots on a bitterly cold day, saying “I win, N*ah! We won!”

 

Nurses Week: a thank you

It’s Nurse’s Week. Julie’s tender post thanking the nurses who’ve supported her along the way made me realize I’ve known a more than a few gems of my own. I also had a couple of duds, but they were far outnumbered by the extraordinarily kind and competent women that cared for us before, during and after my pregnancy with the boys.

So, thank you to the sweet and chirpy nurse at the IF clinic who said, somewhat uncharacteristically, “Hon, this really sucks, and don’t let anyone tell you different!” when we got our first negative after starting IVF. That was my answer to anyone who asked how I was doing. “This really sucks”. That nurse gave me permission to say it like it is and not constantly qualify it with forced optimism I didn’t really feel yet.

Thank you to the nurse who acted as excited as I was when we got a great beta on our third attempt, and thank you to her colleague (Nurse Sweet and Chirpy) who called separately to offer her congratulations, and then popped her head in to give me a delighted shoulder squeeze when our first ultrasound at the RE’s showed twins with a strong heartbeat.

Thank you to the antepartum nurse who reminded me that doctors are better at reading charts than communicating sometimes, and that she really thought we’d be OK. I don’t know how she knew that we’d be OK, but she was right, we were, and I needed to hear those words when I was only 21 weeks pregnant and experiencing PT labor, facing weeks and weeks of hospitalized bedrest.

Thank you to her colleague on the antepartum wing who nicknamed my kickboxing boys “Thumper and Bumper”, and talked affectionately about them when she attended to me, helping me to bond with them and have faith in their resilience.

Thank you to the nurse who appreciated my gallows humor and responded with more of her own.

Thank you for the nurses who helped me politely limit the number of visitors in my room, who could see when I was overwhelmed and on the verge of tears even when my visitors couldn’t.

Thank you for the nurses (almost every one) who never, ever, brought the difficult situations from the other rooms into my room, who had every sympathy for my pain and frustration even when others were dealing with far worse. Thank you to the nurses that got to know us, who told us about their kids and their lives, who brought a touch of normalcy to a strange and frightening experience.

Thank you to the NICU nurses, not only for taking such good care of our boys, but also for taking such good care of their parents. For exclaiming over their cuteness when they still looked a little like skinny plucked chickens. For urging the doctors to let us co-bed them because they knew it mean a lot to us. For respecting and supporting my desire and efforts to breastfeed them by not only teaching me and making it possible, but by assuming we’d succeed. For showing us how to care for them, and how to advocate for them, even helping us to rehearse how to insist people wash their hands and keep them from getting passed around too much in those early days. Despite all the beeps and equipment, all the wires and machines, the NICU nurses took care of our whole family, insisting we get enough to eat, allowing us to deal with our emotions, reminding us that we were going to have so much fun with these boys.

Thank you for your technical competence, for taking the the time to make sure of your measurements, to ask follow-up questions, to troubleshoot with us, to pass on anything worrisome to our doctors right away.Thank you for being straight with us about the possilibilities and what to expect, or at least finding someone who could tell us what we needed to know. Doctors were utterly unreliable in this area, and nurses were consistently able to detect when we didn't have the information we needed from our doctors.

Thank you to the postpartum nurse who, after discovering me sobbing heavily in my hospital bed, pump parts still in my lap, bottles sitting empty on my tray after fruitless pumping, said “Here it is! The 48-hours-past-delivery meltdown!” She followed that with a big hug, and reminded me that milk does come in almost all the time, that most women cry in the days after birth, and that everything I was attributing to the NICU and being so out of shape after all that bed rest was in fact much he same as what most women go through. She was right. My milk came in the next day; I was mostly off the walker a week later.

Nurses are probably in the best position to see the big picture in a hospital environment. They spend much more time with patients than doctors do, and often better know what patients need and don’t need from those around them. They deal with less than glamorous scut work; long, often nighttime shifts, staff shortages and the resulting overwork, hospital and insurance bureaucracy, and difficult patients and family members. They deal with tragedy, triumph, loss and hope on a daily basis. Thank you, nurses, for being willing to do that work. May you be paid fairly and treated well. We need you.

The IVF ethics post I really didn't want to write, part II

This post got a big response, both in e-mail and comments.* Your responses were thought provoking, validating, and heartbreaking, and I thank you for taking the time to share them. I realize that there are a lot of factors to consider, and that there's more than one legitimate perspective on the ethics of embryo transfers and fertility treatment in general**. In fact, I am working on another response to all the interesting and heartfelt feedback, and addressing some issues I didn't get to in my first post.

However, the most recent comment ( by Gudrun) kind of sidetracked that for me. As respectfully as I can, I need to take some big-ass umbrage at this statement:

Because I'd like four kids and am nearing 36, twins seems to be a relatively easy solution for getting there before I'm 40.

Hon, I'm just not entirely sure you're following this. Perhaps we ought to call a spade a spade and rather than simply refer to mutiples as "riskier", lay out what we're actually talking about.

You have (or soon will have) 2 singletons. With a twin or greater pregnancy, you will:

• Double your chances of miscarriage .
• More than double the chances that you'll losing one baby after 20 weeks or in the first month after birth.
• Possibly be among the 10-20 percent of women carrying twins will develop preeclampsia, twice the rate in women pregnant with one baby. (It also tends to develop earlier in the pregnancy and be more severe.)
• Placental abruption is more common, and is responsible for about one in five twin deaths late in the pregnancy or in the babies' first month outside the womb.
• Almost half of twin pregnancies have fetal growth restriction.
• You will have an increased chance of severe morning sickness or even hyperemesis, insomnia, fatigue, general discomfort and pain, water retention and swollen legs, nausea, and problems moving about easily.
• Nearly half of twin pregnancies involve preterm labor. One third of those women end up delivering early (before 36 weeks).
• More than 20 percent of all twins are born before the 31st week with nearly 10 percent born before week 28. Similarly, less than 1 percent of all singletons weigh less than 1,500 grams at birth (very low birthweight) but nearly 10 percent of all twins fall within that category. (source: Everything You Need to Know to Have a Healthy Twin Pregnancy, Dr. Gila Leiter, Page 201)
• A very good chance you'll be on bedrest for weeks, or even months, possibly on a terbutaline pump that will make you feel like you just drank 6 pots of coffee, with no income and no ability to care for your other children.

Not to mention:

• There is nothing "relatively easy" about taking care of two newborns at once, especially if you just got done going through any of the things above.
• There is nothing "relatively easy" about feeling torn in half trying to bond with and meet all the needs of two distinct human beings that both want your 100% of your undivided attention at the same time.
• There is nothing "relatively easy" about having your kids spend their first days in the NICU, for any length of time.
• There is nothing "relatively easy" about breastfeeding twins (in most cases), or not being able to because you don't have the support or resources you need to pull it off.
• There is nothing "relatively easy" about having 2-3 times the chance of divorce compared to parents of singletons.***

There is research that shows that couples are often unaware of how risky multiple births are. This is the information that I would have preferred to know.  If you (Gudrun) were to say simply that you would be willing to risk twins in order to have a child, well, that would be one thing. In fact, that is the choice I made as well, though it was not a fully informed one. I also know that the costs of fertility treatments contribute greatly to the rate of multiples by upping the stakes of each try. I have all kinds of empathy for the hard choices infertile people have to make.

But even if things are quite a bit easier for you that they were for us, I have doubts that any of it will be "relatively easy".

Another reason why some women (including yours truly) not only risk twins but want them is that the thought of going through any more IVFs or other procedures seems so awful, but physically and emotionally. But in addition to not fully understanding the risks of having twins, I really didn't get that an IVF cycle has nothing on a complicated twin pregnancy, perhaps not even on a fairly uncomplicated one. For me, the anguish, fear and stress combined with the physical discomfort and pain of gestating twins made an IVF cycle seem like a day at a rather expensive and high-tech spa. That's not true for everyone, but there's a good chance of it being true even if you do end up with healthy, full-term babies. I know that sucks, but it's the truth.

I look at our situation as a learning experience with a very fortunate and good outcome. I am at peace with all of it. But it was not even close to "relatively easy", and I can't let that get by.

___________________________________________________

*I love hearing from you however you prefer to communicate, but some of the e-mails would have been great for others to read. Posting anonymously is totally fine, if that's the concern. I won't erase respectful anon comments, even if I disagree with them.
**I thought this was interesting, as it gives some insight as to the barriers standing in the way of single embryo transfers.
***Dr. Thomas Beneditti, Director of the prematurity clinic at the University of Washington stated that multiples are twice as likely to die of Sudden Infant Death Syndrome, twice as susceptible to birth defects, six times more likely to have cerebral palsy and 2.5 to nine times as likely to be victims of child abuse. The divorce rate among parents of multiples is two to three times higher than the national average.

For more blog posts on these issues, go here.

The IVF ethics post I really didn't want to write

      

I have IVF twins. We transferred more than one "good-looking" embryo. When I read Julie's post today, my heart sank, because I knew it was time to write about something I've been avoiding.

It is hard to let two truths coexist. Truth 1: I would do anything for my twins, in fact, I love having twins, and I'm so very glad that my family feels "complete". It was worth everything we went through. Truth 2: I would not transfer more than one embryo again if I wanted more children, and I'm not sure that I didn't have some serious blinders on going into the process of IVF. I don't think we were given enough (read ANY) information as to the risks of a multiple pregnancy, and I will always feel like we were somebody else's problem once I actually got pregnant. I take some responsibility for this, but I'm not letting the infertility industry entirely off the hook.

We went to a state-of-the-art clinic and got "gorgeous embryos" with both fresh cycles. We transferred 2 the first time (negative), with a frozen cycle in between (mc at 5 weeks), and the third time (which worked). The third try is running around my living room trying to escape a diaper change, 19 month old twin boys. They are everything I ever hope parenthood would be and more.

BUT

I cannot do the mental and ethical gymnastics required to say that the end justifies the means. It just doesn't. We received NO (ZERO) actual information about how high risk twins are, just a comment here and there and a stated preference to avoid triplets or higher, but that "most twins do OK". What 2 years+ infertile who is desperate for a baby is really in a good position to even be able to imagine having one actual baby, much less more than one? There is solid information out there suggesting that a single embryo transfer in a young "good candidate" like me is just as likely to result in the birth of a child, my doctor even mentioned that this is the direction things are going, but that he "can't quite go there yet".

I first went into labor at 20.5 weeks. I spent months on total bedrest, on lots of medication and monitoring, in and out of the hospital for weeks at a time. My boys had a NICU stay that cost (our medical insurance) hundreds of thousands - for a fairly "uneventful" stay. The costs to our own savings, to our sanity, to my health, the difficulty of parenting twins after months of bedrest, were also astronomical. It was so totally worth it all, but I am still left with the conviction that if single embryo transfers are as effective (or close) for women like me (young, otherwise healthy, good candidates), then the costs to the women, their families and community should be more carefully considered. I am also curious why the clinic psychologist was so much more concerned with how my husband and I "handle stress" than with giving us any real information about the realities of twin/multiple pregnancies. It might not have changed our minds, but it would have been a more ethical approach.

For that matter, someone more objective than infertile couples ought to take a bit more responsibility for the decision to begin with, weighing the costs to everyone involved - the community, the parents, and the babies. The stakes are high when transferring embryos, but the costs can be much higher when more than one are transferred. It would help if insurance covered IVF so that the stakes per "try" are not as high. It would probably also be better if the RE's and the perinatologists actually talked, rather than acting as disconnected parts of a reproductive assembly line. I think my RE is a good man who cares about his patients, but he is almost entirely insulated from the consequences of what he does, beyond seeing his former patients in the elevator. In my case, I was on a walker, so debilitated from bedrest that I was unable to stand on my own. I felt both immensely grateful to the man who had succeeded in getting me pregnant, and vaguely betrayed.

I love both my boys more than life itself, but it might have been best to have them one at a time. I realize that this might be hard to read, and that this is just too easy to say after having had any baby at all. Believe me, I am aware of that, to the extent that I almost didn't write about this for fear of hurting or offending someone going through infertility/IVF. This is too important for me not to talk about. I am arguing for a more ethical and responsible approach on the part of infertility clinics, not trying to judge your individual choices. But please remember, we almost lost them both.

For Part II of this post, go here.

So lucky

Julie has written a wonderful and eloquent post about the kids at her preemie playgroup. She was even kind enough to mention that all NICU experiences are difficult. DH and I received an invitation about such a group a while back, and decided to do the regular “Birth to Three” classes instead. N and O were born at 34 weeks and 23 hours. They have no complications other than reflux, and that’s temporary. They are already on the charts. Yet this good outcome came after 14 weeks of bedrest. I was on a ton of medication during that time, and will always wonder if they might have any long-term issues from that. I was so nauseous that whole time that I gained a total of 11 pounds, and worried constantly about their nutrition. And they were still in the NICU for 2 weeks. Yes, my experiences were nothing like those of babies born much earlier. But there are still many and significant losses. I didn’t get to hold them for a few days, the birth was fast but scary and felt completely beyond my control. I didn’t even feel like I was their mom, the whole thing was so abstract. I didn’t feel like they had any way to know that I was their mom – that I was in a different category from all the other nice people caring for them. After 2 IVFs and a miscarriage, I coun’t really make myself believe I could be someone’s mom, and the tubes and wires made it all that much harder. Because of prolonged bed rest, I hobbled around the NICU and at home on a walker for the first month. Since I went into preterm labor for the first time at 20.5 weeks, we really didn’t know if we were going to bring home our boys at all at one point. The sheer prolonged terror  (and physical pain) of that experience has left me with something akin to prost-traumatic stress. I have nightmares, I feel hyper-alert and anxious a lot. It’s getting better. My boys were born at 35 weeks, and it was still really fucking hard.

I think the decision not to join the preemie group was a good one. Parents of preemies deserve to have a place to talk about their prematurity-related fears and concerns for the future, and we don’t really have any of those. I like our regular baby class, but I can’t help but feel like our experience is invisible. Yesterday I finally got up the courage to ask the one other twin mom where she gave birth. Turns out that she not only gave birth at the same hospital as I did, but that she also spent time on bedrest and hospitalized in antepartum. Her b/g twins were born at 34 weeks, and are healthy one-year-olds. When we discovered this link, we looked at each other like we had found the only other person in the desert.

Friends of ours recently had a 34-week boy, and they went home in five days. He was a giant 6 pounds. She had no preterm labor until her water broke. They are still reeling, it is still hard, and because their boy was (barely) able to go home so early, she does not have the support of the NICU. Her boy was on a bottle right away, and she didn’t get a pump in her room until day 3. She has had to bring her preemie into a germy pediatrician’s office every day to be weighed. She’s not breastfeeding, because she didn’t have enough knowledge and support to get going, and now her milk is drying up. It would be so easy for me to say that their experience is no big deal because they “got” to hold their baby right away, and they “got” to go home so soon. I could tell them how “lucky” they are.

I’m not sure what it is about witnessing a difficult experience with a good outcome that make people want to gush about how lucky the people who went through it are. No one ever seems to find it necessary to say that to the people who get pregnant without much effort and go on to have healthy pregnancies, good births and healthy babies.