My Amendment to H.R. 1628

Thanks to the behind-closed-doors method the Senate is using to try to pass TrumpCare, you now have the opportunity to request that your personal health care premiums not increase by any passing of the bill.  You submit your amendment and ultimately your Senator can decide whether or not to bring it up for inclusion in the bill.  It is then introduced, read, debated, and voted on.  You can learn about the whole process at http://www.ouramendments.org and submit your personalized amendment there.

Some of the essential agreements of the amendment are:

  • [your name] shall not experience a rise in health insurance premiums or a reduction in premium tax credit or assistance with paying cost-sharing.
  • [your name] shall not experience any annual or lifetime limits on coverage; or higher costs due to a pre-existing condition as defined in Section 2705 of the Public Health Services Act.
  • [your name] shall not experience the loss of coverage of any Essential Health Benefits as defined in Section 1302 of the Affordable Care Act or have to pay more in premiums or cost-sharing for coverage including all Essential Health Benefits.

Pre-existing conditions include things like asthma, cancer, and infertility.

Essential Health Benefits include pregnancy, maternity, and newborn care, as well as prescription drugs, lab services, preventive and wellness checks, pediatric services, hospitalization, and emergency care.

I ask you to protect yourself from losing coverage and seeing your premiums increase due to the tax breaks the TrumpCare bill will give to big businesses, like pharmaceutical companies.  Submit your own amendment.  And if you’re up for it, submit your personal story for your Senator to enter into the congressional record, as I did.  For inspiration, here’s what I submitted:

I am a mother of two with a preexisting condition that affected my fertility, a condition which wasn’t discovered until after my doctors declared I was infertile and put me through a battery of tests. I have a Mullerian anomaly – a unicornuate uterus – which means I was born with only one half of my uterus. As a result, many infertility treatments were not feasible due to my congenital abnormality, and I had a high rate of miscarriage as well. When I finally had a viable pregnancy, the fetus suffered from intrauterine growth restriction and was breech. Due to this high risk pregnancy, I had twice-weekly ultrasounds to ensure my baby was growing and healthy. I also had the additional burden of a C-section due to the breech position. I cannot imagine going through this ordeal without the provisions afforded women by Obamacare. I write today on behalf of women everywhere who might have an undiagnosed preexisting condition like mine to respectfully urge the Senate to keep protections for preexisting conditions, to keep funding for essential programs for low-income women like Planned Parenthood, and to keep healthcare affordable by not giving tax cuts to the wealthiest members and businesses.

If you’re so inclined, go ahead and comment with your amendment as well.

I realize it’s not exactly popular for me to have taken a political slant with my blog.  Most of you are probably just curious about what it was like for me to go through everything, and maybe it helps you feel less alone and gives you hope for building your family in whatever capacity that means for you, which brings me such great joy.  Although my infertility struggles are over, I see my role now to be a role model for others, to share everything I learned from the process, and to ensure women are empowered with the information they need to make the best decisions they can for themselves and their (future) families.  That means letting you know when major legislation affecting how infertility, prenatal, and pediatric care might be decreased (or increased!) and giving you the tools to help do something about it.  You may not agree with me, but it does not change the fact that I will continue to advocate for policies that will benefit you through the lens of infertility.  Even if I no longer have a personal need to benefit from those policies.  Maybe that’s just the mom in me.

*I’m not a professional protester, and I have not been paid or hired to write this post.

You need to read this magazine

My local library branch is small.  The building it’s in is basically a small modular ranch home; when you enter there is a small bedroom-sized space with all the book stacks, fiction and non-fiction.  The main part of the building is open, with four cushy chairs for seating in a circle, four computers for public use, magazine racks, and the circulation desk.  To the far left, with the highest ceiling and widest space, is the children’s section of the library, with a small desk with crayons on one side and a wooden alligator filled with board-books on the other.  What the library doesn’t have in books it makes up for in two important ways: one, the ability to have books from any other regional library delivered to this library when available; two, a great magazine selection.

Consumer Reports, Real Simple, Martha Stewart Living… ah yes, this is what dreams are made of.   Issues available for the loaning for two weeks, all free and within five miles of my home.  It was on one of these days thumbing through Consumer Reports for phone reviews a few years ago when I noticed the magazine placed next to it.  Brain, Child was the name.  The tagline: The magazine for thinking mothers.  I gave a half-smile, thinking, “Oh good, there will be a magazine to keep my brain from turning to mush when I have kids.”  I was still blissfully ignorant of how difficult of a time I would have becoming a mother at the time, and I tucked away the knowledge of a magazine I had never heard of before into that place where I save trivia for a rainy day.

Last summer, several months pregnant, I happily checked out my first issue of Brain, Child for a 12-hour car ride.  And within minutes of opening the pages, I was crushed: this issue was going to be the last.  I thought It figures, the minute I get close to becoming a mother one thing I looked forward to is taken away.  I read the magazine sad with my knowledge.  I guess there isn’t a market for thinking mothers.

Fast-forward to a few weeks ago.  Now that my son is no longer a ball of instinctual and evolutionary responses and is gasp! learning things daily, I am making more of an effort to give him purposeful activities.  This would include Saturday morning story hour at the library.  While waiting for other children to arrive, we wandered over to look at the magazines and lo and behold, Brain, Child was there on the shelf.  I thought they must have been saving the old issues for posterity.  But no, the date said “Summer 2013.”  Wait a minute, I thought.  Was this an episode of baby brain where I had completely missed the message?  I grabbed the oldest magazine there – Winter 2013 – and brought it home.

Turns out the magazine did end, but not long after someone had come along to purchase the magazine and keep it up and going.  The new owner/editor, Marcelle Soviero, was a reader who, like me, couldn’t let the deliciousness of the magazine slip away – and I am so grateful she took the leap to keep it alive.

You need to read this magazine, especially if you are an infertilite, but it’s not going to be easy for you.  Every poem, article, essay, and letter is written by a mother.  But every poem, article, essay, and letter is moving and impactful and considers different perspectives on what it means to be a mother, and what it means to have a family.  The Winter 2013 issue alone hears the voices of women who’ve had miscarriages, who are searching for egg donors, who are foster-cum-adoptive parents, who are infertile.  And I have cried at their stories, able to know exactly what they mean and so grateful they were brutally honest about their thoughts, emotions, experiences.  Brutally honest.  But underneath it all, every story is written by a “mother” in however way that means for her.  Unlike other pregnancy or parenting magazines which focus on what chic stroller you should buy or the latest in teething biscuits, this magazine gets to the root of discovering what it means to be a mother.  The decisions you make on behalf of your children and how you think through those; the emotions of reproductive endocrinologist waiting rooms and their travertine floors; understanding teenage neuroscience…  It’s all peacefully co-existing in the pages of one relatively-ad-free (there are a few) judgement-free magazine.

You won’t find this magazine easy to find.  There are no beautiful cover models.  The cover story of this issue is “Playing God? Do kids really need religion?” and beneath that, “Babies and BMI: How big is too big?”  Those headlines fall below the main water color painting on the issue of two red-brown owls with large magnetic black eyes.  But if you let yourself listen to these women and take the time to hear their stories, you’ll find that not only are you not alone but that there is hope for you too.

Go, now.  http://www.brainchildmag.com or @brainchildmag.

Maybe I should play the lottery

It doesn’t matter that I had a baby.  Every time I see a pregnant woman it’s as if I had never been pregnant.  The same internal dialogue races through my mind, even in the day care parking lot as I’m carrying my son in to school.

It must have been so easy for her.

Look at her, she’s working on number three.

Lucky!

I should know better.  I was aware of my own belly bearing those same reminders to other women, to the point that I was sometimes embarrassed I was pregnant.  Spending the better part of 2012 pregnant did nothing to stem the jealousy that I still feel.  Maybe I feel this way because I spent my whole pregnancy walking on eggshells, hoping to make it to the next week, the next month, the next trimester.  I am still in disbelief that I made it to full term, much less almost to 40 full weeks.  I know how the odds were stacked against me at every turn, and still I beat them, and no one would have known that by looking at me.

(Well, if they had looked closely at my stomach in the last trimester, they would have seen the lopsided effect of the unicornuate uterus keeping the baby on the left side…  But who really knows that you can have half a uterus unless you’re the one facing that diagnosis anyway?)

It’s a weird feeling, trying to rectify the absolute miracle that happened to me – from beating the odds of having a spontaneous pregnancy, to beating the odds of complications likes placenta previa, to beating the odds of having a miscarriage, to beating the odds of pre-term labor and incompetent cervix – to making it full-term.  About the only thing I couldn’t beat was the intrauterine growth restriction, try as I might with the amount of protein I ate every day, and the breech position.  I have friends who had completely normal pregnancies, completely normal uteruses, but delivered early for one reason or another.  They were never on bedrest, were never asked not to exercise, weren’t going for twice-weekly non-stress tests like I was.  One of my midwives had said he expected my baby to come out “glowing” from all the surveillance he was on.

No, my baby didn’t come early.  He was content to wait even in cramped quarters until the scheduled C-section.  He was healthy enough to room-in with me – another miracle.  And yet, in speaking with my friends who had the early or pre-term babies, for as much as having a pre-term baby is a heartbreaking, scary experience, it meant they didn’t go through the same discomforts that I went through in the last month of pregnancy.  They didn’t gain weight rapidly or get so uncomfortable in any position they couldn’t sleep.  And once they had their baby, they could recover – and sleep! – in their hospital room because their baby was not with them. 

I look at other “normal” women and think they are lucky without having any clue as to how long it might have taken them to get pregnant, just because every minute I was pregnant was a victory for me.  But a newly-pregnant first-time mom might know I had my baby skin-to-skin immediately after birth and rooming-in with me during recovery, and think dreamily how that is the perfect, ideal scenario, and how lucky I was for that to happen.  And then I talk with my pre-term friends who hear my story about the guilt of sending the baby to the nursery just to get some sleep for a few hours, about never getting any sleep longer than two hours because the baby wakes up, and how that hinders your ability to recover.  And every single one of them has said, “You know, although it was really scary at the time, we were so lucky to have had the baby being taken care of in the NICU.”  

Imagine that. 

No one wishes the NICU on anybody.  But every pregnancy, from start to finish, is different, complex, and scary – even the so-called “normal” ones.  So when you think someone else is lucky because their situation might be more ideal than yours, remember that person might be looking at you and thinking you’re the lucky one.  Count your blessings each and every day, especially the blessings in disguise.

The infertilite and the next baby question

No matter how old – or young – your first baby is, there is going to be someone who asks you “So, when is baby number two coming around?”  You will be overwhelmed with managing the first baby, quite possibly with the little squirt in your arms, and you may or may not have gotten around to putting on makeup that day.  But someone will ask the question, and they will be puzzled when your response is anything but positive – because of course you want another one!

This question shows just how tricky it is to be polite but not misleading in a (formerly?) infertilite situation like mine.  People who know just how difficult it was for you to get pregnant won’t ask – just as they knew not to ask when you were going to get pregnant in the first place, and knew not to have a baby bump watch for you.  It’s all the people who don’t realize how difficult it was, who don’t know, or who don’t think it was such a big deal because you got pregnant anyway so obviously you’re not infertile, who will rush right in to discussions of your future children.

Fortunately, I like using these kinds of questions as an opportunity for anthropological studies.  The first time I got the question was from some coworkers I was visiting this week.  One woman, who both shares too much and manages to turn every conversation into one about herself, asked with glee when I’m going to have the next baby.  I tried the evasive approach first – “Uhhhh….  I’m not sure.”  I said it with a smile, hoping she might infer that I already had my hands full.

Result: The evasive approach is not enough of an answer.  The questioner will continue prodding, probably with a statement like, “Oh, come on.  Don’t you want another one?”

I tried the duck-and-cover excuse for this second round.  “I think if you asked my husband, one’s enough.”  I was half-joking about this, because he really doesn’t enjoy the night wakings.  But this excuse still did not satisfy her.  She really wanted to hear me say, “Maybe in a year or two!” and maybe that’s how I should have answered.  Instead, I continued to excuse it.  “I don’t know, the first six weeks were rough.”

“Oh, but you get over that.  Aren’t they so cute?”

Excuse number three: “I had a section, and I don’t think I could put my body through that again.”  Another half-truth.  “You know, I couldn’t drive for six weeks, I couldn’t exercise until last week…”

“Oh, well I had two c-sections, and I don’t regret them one bit!”

Grrr!!!  She’s good.  And before I could throw in excuse number four, the two guys, both with kids under 5, jumped to my defense.  “Nah, it’s too soon.  You’ve got enough going on with that guy.”  That seemed to shut her up enough to change the subject to the exact shape and location of my scar, which is not exactly what you want to talk about in the office.  She just wanted to ask, though, because she wanted to share hers.

I know there will be others who ask the question, “So do you want another?”  I don’t know why people think that’s an appropriate question.  I think I’ve probably asked the question, though, because it seems like what you do.  Maybe I might have asked it differently, though, and left space for people to tell a half-truth: “Do you think you will have another?”  Still, if a person is persistent enough, they could ask that question and still want to know why.

If I were to answer anyone about having another baby with, “Oh, well, I have a unicornuate uterus, which increases my risk of miscarriage, low birth weight, and preterm birth, so I’m not even sure if it’s the ethical thing to do to try to have another one…” it’s too much information.  And besides, they’ll say, you had your first one without any problems.  Which isn’t true, but I did beat the odds at least in having a full-term guy, though he did have intrauterine growth restriction (IUGR).  But you can’t tell that by looking at him, other than the fact he’s smaller than other kids his age.  No, I think this time around my approach has to be a little more polite.  “Not for a few more years,” is one option but leads people open to starting another baby watch in a few years.  “If I have another one it won’t be for a few more years,” is probably more prone to the round of questioning and excuses as I went through the other day.  “Thanks, but let me get my sleep back first,” can be a funny way to dodge the question.  Maybe that’s the one I’ll try next.

I wasn’t expecting this question to sting, but it does.  It rips open that same wound that was there when I first learned about the UU and the odds I had, because having one baby doesn’t change that fact or change my odds for the next one.  And the guys at the office were right, it is too soon to really think about anything.  Most days I’m not even sure what day it is… and that’s a beautiful thing.

The infertilite and the c-section

Yes, the arrival of my beautiful baby boy is here!  He was delivered at 39 weeks 5 days via scheduled c-section because he remained breech with his head fully engaged in my ribs.  Even though all the other birthing “experts” said “Oh don’t worry, there’s still time, he’ll turn.”  Well, he didn’t, because little did they know he barely had room to grow.

It was a minor miracle that he was delivered at 6 pounds 10 ounces given that he had a unicornuate uterus for a home for nine months.  Getting him to that size was no small feat on my end, and required me to eat a lot of protein, a lot of calories, and a lot of fat.  And as the time came near, and the specialists dismissed me from their care because he had gotten far enough and at a big enough weight (at 6 pounds they were no longer concerned), there was nothing left to contemplate by the actual birthing process.  Which, granted, I knew wouldn’t be a vaginal birth.  I spent nearly two months petrified of going into early labor, constantly checking in with myself about possible contractions.  It was no solace when an OB told me that due to the nature of my uterus I was “likely to fell things differently anyway.”  For the record I recall only two contractions, and both were at night and were excruciating back labor pains.  Some of the worst pain in my life.

I was still in denial about having a c-section when I had to schedule it.  I was told to meet with the surgery scheduling secretary of the OB group one day after my NST, and when I walked in I had been frantically texting my husband about what was happening.  The secretary started the conversation with, “Well, it looks like January 2nd, 3rd, or 4th.  What’s better for you?”  Really?  What’s better for me?  How bizarre; I felt like I was in another world.  Although I thought it might be “fun” to have my son’s birthday be 1/3/13, I ultimately chose the 4th for two other factors: 1. the doctors who were available that day, 2. I wanted him to stay in as long as possible so that he had the best chances once he was delivered.  What if all the doctors were wrong?

It turns out that scheduling a c-section creates the same kind of pause in others as much as a story about infertility, or about using IVF, to conceive.  There’s always this uncomfortable silence, like, “Oh why would you do that?  That’s so unnatural.”  It’s enough of a silence to make you feel like less of a woman, that your body is not capable of doing what it is biologically created to do.  I couldn’t help but think of even 100 years ago, before all our modern medical trappings, that a woman like me would probably have recurrent miscarriages, stillborn babies, and be at a higher risk of dying during childbirth, and I felt so utterly sorry for all of those women who didn’t have the luxury of scheduling a surgery.  So whenever someone asked about when the date was coming, or when I was able to start telling people that unless he came early the 4th would be his birthday, many times the news was greeted not with joy or happiness but of confusion.  Even among nurses that I encountered in the hospital, when I explained it was a scheduled c-section, they would stay quiet and I could tell they wanted to ask – but I guess so many people elect the section out of convenience they’ve stopped wondering why people do it.  So I fill it in for them – “He was breech.”  “Oh.”  And I can almost hear their brain ticking as they silently forgive me for not being woman enough.

The only person who seemed to take me and my condition seriously was, appropriately, the doctor I had chosen for the surgery.  She had been supportive during my OB meetings with her, and was equally supportive during and after the surgery.  And she used the opportunity, with me still open on the operating table, to show the entire staff in the room just exactly what a unicornuate uterus looked like in the flesh.  “You read about it in textbooks, but you’ll never forget it once you see one in person,” is what I distinctly remember her introduction as.  I wish I could have seen it too.

As a side note, my doctor confirmed the left-side uterus diagnosis, and discovered that my right ovary had a non-functioning/non-connected tube and was actually slightly smaller than the left ovary.  “But you only need one!” she said later.  I don’t think she remembers I ovulated from the right side.

At the same time, I wish I wasn’t awake for that part, since I couldn’t see but could sense all those eyes in the room peering over my belly, staring at the remains of my uterus and fingering a limp infertile ovary.  I should have felt proud, to live what I preach here, to help educate those who can do the most good with this information – those on the front-lines working with patients – by being a living example, but with a few stitches being the only things keeping me from joining my husband and baby in the recovery room at that moment all I wanted to do was get the hell out of there and meet my son.

Freaky Friday and the minor miracle

At my week 10 appointment I officially “graduated” from the fertility clinic to my OB/GYN group.  My PA performed the ultrasound and let me watch the baby the entire time she took measurements.  I was shocked at the amount of movement going on in there that I couldn’t feel at all.  Little kicks and little waves, already trying to push its way out of the narrow spaces.  Then the other shock – hearing the heartbeat for the very first time.  I would be lying if I said it wasn’t freaky, hearing the big “BUMP bump.  BUMP bump.”  (that’s you, the doctor said) then a little “whish-whish-whish-whish-whish-whish” after she moved the transmitter a little to the left.  FREAKY.

Oh, but that wasn’t even the freakiest news of the day.  In her final measurements, the PA located and measured the follicle from which the egg had erupted.  “I saw this last time but I wanted to make double sure.  You ovulated from your right side.”  Meaning, from the ovary that doesn’t have a fallopian tube or half-a-uterus to connect to.  Meaning, that little egg had to criss-cross my abdomen to even get sucked in by the other fallopian tube, then it had to get fertilized, and then it had to be healthy enough to even stick.  And the chances of that happening in a unicornuate infertilite is like slim to none (technically less than 5%).  Maybe running 12 miles a week helped move things along?  J

Oh, but wait – the story gets much better.  There is kind of a superstition in my family that when one person dies, someone gets pregnant.  It’s just how it goes, and how it’s always worked ever since I could remember.  In late January my husband’s grandmother passed away and I really didn’t think much of it, because after all she was an in-law and probably didn’t count in my family rule.  But then I got pregnant and miscarried right afterwards.  Oh, but then I got pregnant again.  “Do you realize,” my husband said to me last week, “That you’ve been pregnant every possible time that you could have been since she died?  How do you feel about the name Agatha?”

He likes telling that story to his aunts and uncles, especially now as we are finally cleaning out her house and dividing her belongings.  I think it helps him have some kind of ownership of an experience that is largely out of his control, even if it’s not entirely true.  And thanks, Grandma Agatha, for your divine intervention, but your name still isn’t on the list.

Protect yourself from obsession, pregnant infertilite

One of the first words of advice I got from both my PA and one of my former-infertilite friends was not to believe everything you read.  (B. confessed to me that she threw What to Expect When You’re Expecting across the room when she read that if she wasn’t eating 6 small meals a day she was starving her baby; she could barely keep water down much less eat all day long).  Every author has their own angle, and no one really covers everything that you need to know.  And, they said, don’t drive yourself crazy with the internet.  It is so tempting to look everything up, analyze, and freak yourself out.  Just keep things in perspective and trust your doctor.

In the four brief weeks I’ve been fortunate to even be thinking about this, I’ve started to put together my own words of advice to any infertilite experiencing pregnancy.  Here goes.

First, the internet isn’t that bad as long as you stick to reputable sources.  There are a ton of websites out there who want you to sign up for their weekly emails to tell you what you should obsess about each week.  Take a look at a few that are interesting to you, give their site a glance-through and see if it’s tone, messages, and level of information are right for you.  I personally subscribe to BabyCenter.  Try to pick one, or two if you find two sites with complimentary features, but make sure not to overload yourself.

Second, be very cautious of discussion boards and comments especially if they are on a general pregnancy website.  Sure, it may be reassuring to know that you’re not the only one craving York peppermint patties.  Just know that the moms on those boards represent a WIDE range of age, background, and experience.  You won’t find the same kind of sensitivity on those general boards as you might in a smaller, more intimate group – especially one in tune with your infertility background.  (Again, I can’t say enough about the UUSisterhood and Mullerian Anomaly Yahoo groups and the supportive women on those boards).  I recently read a post on the January Birth Club discussion board on BabyCenter of a wonderful poem written “for those of us who have had mc (miscarriage).”  It was followed by another post – written in all capital letters – DON’T TELL US ABOUT YOUR MISCARRIAGES – which asked all the women who, in their responses on a post, write about having had a miscarriage after doing certain things or as a result of whatever happened to refrain from bringing everybody down.  “We’re already all scared of a miscarriage; we don’t need to be scared any more, we need to be reassured.  Don’t rub it in our faces and keep it to yourself.”  OUCH.  It made me want to respond, “There are women on this board who have really struggled to get pregnant and might have had a few miscarriages on the way.  Don’t rub it in OUR faces that you’re on your fifth baby and you weren’t even trying.”  The women’s bios that I’ve read on this particular board range from teenagers in high school to women in admittedly abusive relationships to women with multiple children already at home who think their advice is the definitive Truth.  While we all should be supporting each other through this time, instead the banter factions into cliques and sometimes hysterical drivel.  If you peruse them at all, take it with a grain of salt.

Third and finally, just because it’s a trend doesn’t mean you have to do it if you don’t want to.

Seriously the cutest jacket ever.

“Belly photos” are all the rage now – some people actually have these professionally done.  This, and other suggestions such as “creating a daily ritual that helps you connect with your baby,” sound like a great idea in practice but are met with skepticism from the burned infertilite.  You may want to take belly photos but you’re petrified about the “what ifs” – what if this one doesn’t last?  What will I do with the photos then?  You may want to keep a daily journal of your pregnancy experience, thoughts, and wishes for your baby, or even start a scrapbook, but you’re worried that this will jinx the experience and it will be all for naught.  These emotions duel with the other implication that you’re afraid if you don’t do these things that everyone else is doing that your child will be at a disadvantage and you’re a bad mother.  How could you not record every moment of my life, mommy? you hear your disappointed unborn child ask.  Do I mean that little to you?  Well, this just sounds silly, doesn’t it?  Ignore the trends.  Do what’s right for you and what you’re comfortable doing.

If you’re crafty and excited and ready to live in the moment, scrapbook till your little fingers bleed.  If you love the camera and have a willing photographer and scenic landscape, go ahead and do the belly shots if you want to.  But do not feel guilty for not doing any of these things, and don’t let anyone tell you otherwise.  Your only responsibility is to have the healthiest pregnancy you can – physically and emotionally – and if that means holding off on cuddling the cute Carter’s bear cub jacket in the store until you’re six months along, instead of blissfully daydreaming at week 10 about how cute your little bear cub would look in it, then so be it.