News about what’s next

I realized that over the last year, while I haven’t had much time – or even infertility-related news, considering – to keep up on the blog, that my most popular posts aren’t even the ones having to do with medical conditions. I guess with unicornuate uteruses being rare to begin with there just isn’t a huge demand for information for it. No, instead some of my popular blogs have been product reviews and, strangely enough, about Obamacare. It seems weird to me that of all places on the internet, this website is a popular hit among people wanting to find out whether or not Obamacare covers infertility treatmets. And my initial posting on that was rather vague, given that Obamacare hadn’t been rolled out yet. But now we’re almost approaching one year of Obamacare being available, so it’s time to update the post.

I plan on continuing to provide product reviews and updates. I still have a few more posts to go about my experiences with my now five-month-old, and my new life as a stay-at-home-mom (temporarily!). But my next big focus is going to be delving into more details about Obamacare. I personally don’t know a lot about it, only what I’ve heard about in the news or what friends and family have told me about their experiences with it. And in order for me to really be able to answer the question, “Does Obamacare cover infertility treatments?” I’m going to have to do a lot more learning about it. I am not going to be the expert. But I feel I owe you, the reader – and perhaps you, the person who used Google to find me, you who are new to the land of the infertilite – a little more in the way of navigating the answer. It’s going to take me a while, but I hope to have something substantial by the time I’m through. In the meantime, expect some more reviews and updates from me. Thanks for reading and happy fall!

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.

Stretch remarks

You don’t truly understand what it’s like to have kids until you have them.  And you don’t truly understand the hard parts of (getting, staying) being pregnant until you are and have been.  And as much as my name is Hope, I try to keep my optimism realistic without too much pessimism, personally.  But recently I had an encounter with a coworker that made me question my own outlook until I realized she didn’t know what she was talking about.

We had been talking about big changes happening at work, and I had started the conversation by asking, “Do you have time?  I have to tell you something.”  Conspiratorial in nature, perhaps, but I didn’t have a serious demeanor – more like, “you-never-guess-what-just-happened” gossipy a-la TMZ. We had our little conversation and then went about our business.  Later, we walked out to the parking lot together and she said, “You know, when you first came in to talk to me I though you were going to tell me you were pregnant again.”

This coworker is in a committed relationship but not married, no kids, no house.  She knows about my UU and saw me leaving early two or three times a week for the testing I had to endure.  Sometimes I think she makes these kinds of comments because she wishes I wasn’t in the picture, that maybe I’m a threat.  Our friendship is sometimes more frenemy than friends; this is one of those moments.

I retorted, “I’m not ready, and I doubt that would happen anyway.  It was a miracle that it happened at all.  And I was so grateful for every day I stayed pregnant even into full-term.”  I thought that would shut her up.

“But everything’s stretched out now, so that’ll make things easier.”   Ugh.

“Doesn’t change the fact I have one tube and one defunct ovary.  And it’s still banana-shaped.”

“My aunt had one tube here (she pointed to her right) and one ovary here (she pointed to her left) and still had both my cousins.”

This example didn’t seem very useful to me.  I know this woman and I know her relationship with her family isn’t exactly all cookies and milk.  That she would know this much about her aunt’s anatomy was surprising, and I am willing to guess it’s all second-hand knowledge from her mother.  So a third-person story about a woman who had her children at least four decades ago didn’t seem that relevant to me, even if it was about a Mullerian anomaly.  She only said she had one tube and one ovary, and while it might have been likely she had a normal, pear-shaped uterus that part of the story was missing.  That’s kind of the critical part in my situation.

Without wanting to get into it, I tried to deflect the conversation with “Still…  I don’t think we’re going to have another.”  And then I changed the subject to weekend events.

I’m trying to understand why that conversation wasn’t very helpful to me, and I’ve settled on the fact that it’s because she doesn’t know what she’s talking about, but acting like she does, and not exactly being sensitive about it – as in, continuing the conversation without noticing that I didn’t want to talk about it.  When you’re infertile, the issue becomes highly charged and personal; when you’re fertile (or blissfully unaware of your fate, as I was) you take for granted that pregnancy can/should come easily, and you can banter possibilities about like laundry hung out to dry.  No big deal.  This should be easy female bonding talk, and it would be if everyone were in the same boat.  Infertility is like dirty laundry; something no one who doesn’t have it wants to talk about and something people who don’t know any better seem to think can be easily fixed.

File “Don’t worry – you’ve already had one kid, your uterus can stretch for the next” under “Irresponsible remarks to an infertilite.”

The infertilite in the c-section class

With a UU I’m really conscious of the fact that in the last stage of pregnancy, you need to be prepared for an “anything goes” situation.  With an increased risk of preterm labor, incompetent or early effacing cervix, low baby birth weight, and breech baby, I think it would be foolish to ignore the possibilities of bed rest, early labor, or c-section.  That’s not to say that women with UU haven’t had perfectly healthy, large, full-term babies before because they have – just go to the Yahoo group for a number of those stories.  And as much as I may hope for a normal situation, I realize I’m not normal.  One of my first actions was to be open to both “childbirth” classes and c-section classes.  Yes, believe it or not, my hospital offers a c-section class.  I signed up for it and dragged my husband along for the ride.

Apparently the c-section class is not as popular as the “Maternity Information Night” class, which was packed with probably 30 couples.  Nope.  This one-time class was just two couples (including us), the nurse educator, and a PowerPoint.  Hello awkward!  But at least when it came time for questions, I didn’t feel so bad asking as many as I could since there were only two of us there.  Yet between the two of us, we had two vastly different approaches to this whole birthing process.  The other woman in the class, who was maybe 34 weeks at the time, had already scheduled her c-section delivery and admitted that it was elective and entirely her choice.  She also admitted that she didn’t want to deal with the pain of childbirth (it was her first child).  She had great questions about what to bring, what to expect, because she had clearly thought about how to prepare herself for walking into the hospital calmly and walking out with a newborn a few days later.

Meanwhile, I found that the medical profession faces so much liability that it might actually hinder those of us with special medical consideration to get the kind of information (or plain old confidence) that we might need to make the best decisions for us.  I told the nurse that I have a unicornuate uterus, and I asked her how that impacts which kind of incision the doctor makes in the uterus and what other complications might arise from that.  “Ask your doctor,” was essentially her answer.  And that was her answer for most of my questions.  So here is a woman who has worked as an OB delivery nurse for 30 years who couldn’t share with me her experience with women with Mullerian anomalies because, I’m assuming, of liability – because there might be someone out there who says, “But my nurse said most women with this MA don’t have to have a c-section,” and decides to sue the hospital.  I’ve found that to be the case with most health care practitioners.  Here I am trying to advocate, and here I am running into brick walls.

The evasion aside – after all, she really wasn’t going to tell me someone I didn’t already know or suspect (but a little reassurance would have been nice) – I walked out of that class thinking one thing – I don’t want a c-section if I don’t have to have one.  Frankly I don’t understand people who elect for that kind of surgery.  Major surgery.  MAJOR abdominal surgery.  It’s not a matter of just taking something out under the skin – they are cutting another organ open, then have to sew everything else back together.  I’ve heard women say that having a c-section is the easiest way to get your stomach back into shape after birth – but do you really want to give up the ability to hold your baby once he or she is born?  Do you want to delay establishing breastfeeding within the first hour?  Do you want to be in a post-operative recovery room with pressure cuffs on your legs to prevent blood clots the first day after the surgery?  Does not driving yourself anywhere for at least 2 weeks, maybe longer, really excite you?  Or what about your child having an increased risk of being obese later in life just by virtue of being born through c-section, regardless of your health history?  All for an “instant” flat stomach and a baby without a squished face?  Sometimes I have to wonder if people have really lost their minds.

My bottom line: if I have to do it, if it’s medically necessary, then that’s just what I have to do.  We will just have to wait and see if my body and my baby cooperates!

If Mr. Hyde was an infertility patient

My husband has really been a trooper about all of the testing and doctor’s appointments. He’s even subjected himself to two separate sperm analyses at two separate labs – first at the bright and shiny new fertility clinic last summer, then again a few weeks ago at our current fertility clinic (the one that’s been open essentially since IVF has been around, 30 years).  Our current clinic wanted to do another test because “We have a little higher standards and look for different things than the other clinic does.”  Oh, okay. A mild embarrassment for him yet a relatively painless procedure, and compared to what I’ve been put through he didn’t complain.

He received his results on a Saturday, sent right to his online patient website.  One of the findings of this test was a term unfamiliar to both of us – “macrospermia.”  It isn’t exactly an easy term to find even on the internet, and it was often paired with or used as a synonym for “necrospermia.” And I’m pretty sure I can figure that one out without a dictionary.

Essentially, his sample was full of dead or really disfigured sperm.  Or, as he calls them, “Monster High sperm.”

Sidebar: Monster High is some kind of tv show that our niece is obsessed with; I think you could probably guess the concept from the title and the picture above.  Our niece has more MB dolls than Barbies and loves them, even if their hands and arms do tend to break off the doll at an alarming rate.  Or maybe it’s more true to character, if they’re all dead anyway?  That’s Clawdeen pictured above, just so you know.

And of course, you get this news and once again the tunnel-vision settles in: We could be dealing with a double whammy.

Given that his first test was “normal” at the other clinic, and this one was a huge fat zero, the doctor recommended that he repeat the test in a few more weeks.  This time at the clinic, rather than collecting the sample at home and bringing it in.

He’s a little excited about that idea just as much as he is skeeved out by it.  He’s had a peek at the collection room – comfortable lounge chairs, a television, a collection of magazines and movies.  You would think that a sperm bank would have the most efficient material available, and I think that’s what he finds interesting.  It’s more of an anthropological dig in his mind than it is a serious medical facility. I can’t wait for a full report – to find out if 50 Shades of Grey is included among the material for all the press it’s gotten in the last month.  I’d probably even read the book, just to join in the water cooler discussion, except I read a review that said it was Twilight fan fiction but with enough details to not get the author’s ass sued.

I’ll pass – I already have enough monsters in my life…

A visitor of undetermined location

When, on my seventh cycle of clomiphene citrate – and the third round at 100mg doses – my period didn’t arrive when expected on day 28, I didn’t panic.  The previous month it had extended my cycle to day 30, so I didn’t worry.  I took a HPT which was negative and went about my business.  When it didn’t arrive on day 30, I didn’t panic either, thinking it would happen any minute.  But on day 32, when putting on a sports bra to jog was nearly unbearable, I took another HPT – got two lines – then panicked.  I purchased a different brand HPT and took it in the afternoon the next day.  Two lines again – positive.  Having just begun to accept that the natural odds were stacked against me I had to unwind all of my thoughts and start preparing for the next whirlwind of steps.  I called my clinic and was scheduled for my first blood test early Tuesday morning. 

After a six hour wait for the test results, my nurse called with the news exactly at the time she said she would.  “Congratulations!  You are pregnant.  Your hCG level is at 80.  We will have you come back in two days to check your levels to make sure everything is rising.”  W-o-w.  There was no more denying it.  I googled an expected due date (end of November).  Based on my calculations I should have been, technically, about four weeks pregnant.  On the ride home that day I thought twice before sticking a piece of gum in my mouth, wondering if the artificial sweeteners and chemicals in it were safe to ingest.  I thought better of it and put the gum down, despite the Pavlovian need I have to chew gum while driving home. I was determined to give this pregnancy every possible chance to succeed.

In those first few days I had mild cramping, deeper and higher than usual PMS cramping, which started on day 32 and lasted until the day after my first blood test (day 36).  Everyone told me this was normal to experience, and at best it was distracting, at worst mildly irritating.  But in my mind, as long as I felt cramps, something was growing.  So when they topped part of me was relieved (maybe I could finally concentrate on work), but part of me knew something wasn’t right that they had stopped so soon.  I don’t know that I could call it women’s intuition, but I guess I’ll just say my fears were confirmed with Thursday’s test result phone call, which took at least three hours longer to get than Tuesday’s: “Your hCG is rising but it’s rising abnormally.  It’s at 96.  We would expect the number to have doubled by now, somewhere between 150-160.  We need you to come back in two days.”  By now the inside of my elbow was bruised, but at that point I knew and started to prepare myself that things weren’t going to last.  I waited another 48 hours for my third set of results.  The number then was only 123.  This is the point at which they start to prepare you for the worst – that it’s ectopic, meaning in the middle of my only good tube, which has a danger of rupturing the tube and could be fatal.  I panicked, backed off my exercise routine and waited another five days for my next appointment – an ultrasound. 

I didn’t know what to hope for from that appointment.  I hoped that it wasn’t ectopic.  I hoped that it was in a place where there might be a fighting chance.  I hoped I hadn’t done something wrong to cause the word “abnormal” to become the situational descriptor of choice.  But nothing prepared me for the sight on the screen – an empty gray and white cavity (my uterus, which the doctor and nurse had both concurred, “That sure doesn’t look unicornuate from that angle”), and a dark spot barely discernible by even those who stare at these kinds of pictures all day long in the top left corner.  It was like trying to find the big spot on Jupiter, if Jupiter’s atmosphere was entirely as orange as the spot is.  “We think that’s it,” the nurse said.  “It doesn’t look ectopic but we can’t be sure.  We would call this a ‘pregnancy of undetermined location.’  But your levels are still not rising as they should.  If it doesn’t take care of itself naturally, we’re going to have to give you some medication.”  

I went home to tell my husband and to prepare for what I knew would be coming – the reality of this pregnancy being non-viable and the side effects of methyltrexate.  In typical fashion, my husband was optimistic.  “This is good,” he said.  “That’s okay if this doesn’t work out.  What it means is that it’s possible – that it could happen.  This is all right.  This is for the best.”  I wish those feelings came as naturally to me as they do to him.  That’s why I fell in love with him. 

Three days later, the miscarriage started just as it had four years earlier.  I updated the folks on the message boards I belong to, who had been sending positive thoughts and well wishes my way since the start.  And there, one of the women gave me a new meaning that eased my pain and gave me the strength to move on: 

“Maybe somebody out there doesn’t want you to give up.”