When I saw an article last summer about a woman who took to social media to expose and essentially pressure a school to stop asking questions perceived as too personal on a kindergarten application, I didn’t read it.  I thought it would pertain to one school, or just a handful of schools that maybe don’t have it together, and one parent making a mountainous outrage out of a question she could just as easily have ignored.

Then I took my kids to the dentist, and I was asked during the intake process if there were any complications with the pregnancies.  Not exactly the place I’d expect to ever get that question.

I’m not opposed to answering questions like this when it comes to my children – not in a protected privacy setting like the doctor’s office.  After all, there’s lot of research that what happens in the womb and even during birth can have lasting lifetime effects on children – from chance of obesity to reaching developmental milestones – which is presumably why there’s a question on the kindergarten registration.  But teeth?  Really?  And, who cares?  Teeth can be fixed, right?

So when I’m asked the question, I quickly dust off my elevator speech.  “Intrauterine growth restriction.”  The nurse, who was sweet, kind, and only asking questions as they popped up on her computer screen, continued, “Do you know what caused it?”  “I have a unicornuate uterus.”  I could tell by her pause that she hadn’t heard it before.  “I basically have half a uterus,” I finished.  She smiled and thanked me for the explanation.  No more questions.

Now, I still kind of doubt that a dentist would really need to know about that but maybe there’s a reason for it.  And why wouldn’t a school want to know if a child is coming in at a disadvantage compared to other kids, particularly if that child might need additional services?  And wouldn’t you as a parent want to advocate for your child?

I think if I were to put this into perspective, imagine for a moment that it’s 1985 and the question on the form was instead, “Did you smoke while pregnant?”  A loaded question, for sure, but at the time lots of people still smoked around kids and didn’t think there was anything wrong with it.  Three decades and lots of research later we know better to the point that legislations abound protecting kids from second hand smoke and a horde of other ills; but would you have blamed phys ed teachers in the 80s for wanting to know if a kid might have asthma?

So I went back to read the New York Times article after my experience at the dentist.  If suddenly people are probing into your kids’ health history as far back as birth then maybe there’s more I need to consider.  And it seems that the author of the article saw the question as an egregious invasion of privacy and didn’t like that the registration form wasn’t kept locked up under lock and key.  Okay, maybe that’s a valid point.  But is that really more egregious than search engines using information they know about you to sell customized ads and make money?  More egregious than apps on your phone wanting access to your identity, pictures, text messages, and location?  How do you think Google knows when stores are busy, or Instagram knows when one of your friends creates an account, or your phone gives you coupons for the supermarket you just pulled up to?  Is anybody wondering how secure any of that information linked to you is, where that is stored?  And I think my pictures, my messages, my email, my location are more valuable to me to protect than knowing if my kid was born through a C-section or not.  Especially if said information can actually help my child.

Here’s the original article about the kindergarten questionnaire.  And yes, my school district’s questionnaire asks the same question.

Participate, educate, and be heard

Yeah, so that Affordable Health Care Act review isn’t going to happen. I have a million excuses to use, most of which include my kids, but which also includes the daunting website itself. I underestimated the amount of free time I would have. But free time starts out as a fantasy with a newborn and increases exponentially as they get older.  And it’s only worse with another toddler added into the mix. So it’s a no-go… at least for now.

Fortunately we are only less than two years away from choosing the next president. This is a chance for you, as a voter, to ask whether policy makers will support your reproductive rights, support funding for treatment of your diagnosis, and support ARTs.  For an idea of where potential candidates stand on this issue – because for most politicians, and probably for a great deal of the general public, “reproductive rights” is a euphemism for right-to-life/abortion rights – you’ll probably have to dig a little deeper into their speeches and voting histories.  I just Googled “where does Marco Rubio stand on infertility treatments” and got a big fat nothing, though there is already some chatter about whether he’ll stick with the Catholic Church’s doctrine on that.  But it’s early in the campaigning and if someone, somewhere, asked anybody about anything it’s probably going to be documented somewhere…

…And it might also be spun somewhere.  So while we’re learning about what Hillary is going to do for the little people (aka. the village raising the children), or how Dr. Paul is going to get government out of the way for people, remember that there are few independent unbiased voices in the fray.  Media outlets – conservative and liberal alike – don’t always tell the entire story.  Candidates – heck, even senators, representatives, and probably your mayor if s/he’s running for reelection – are coached to say words that sound like answers but are really vague statements that are either so eloquent or so obtuse that we forget what the original question was in the first place and by the end we are ready to move on.  It’s kind of like looking at a Jackson Pollock.

One: Number 31, 1950

It’s substantive.  It’s impressive.  And it might even make you feel something, although this one makes me feel dissonance, like my eyes are listening to static.  Then you feel, “But is it art?”  And then you wonder if that was his message all along, and we’ll never know, because once art is viewed it becomes an experience shaped by both the viewer and the artist alike.

…See what I mean?  Back to the point – voting is only democratic when it happens in the aggregate.  Like choosing organic at the supermarket – alone you might feel like it doesn’t make a huge difference, but if enough people do it we begin to see change in choices.  Voting with your money is yet another way to use your voice. And infertilites already have voices on the outskirts of the mainstream.

Participate, educate, and be heard.

 

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!

Yes, my boobs are weird…

So remember how I said that I keep reading that “there are few medical reasons” why a woman couldn’t breastfeed, but never saw any references for what those might be? Well, here’s one: hypoplasia.

Hypoplasia is a term most often used by plastic surgeons to describe breasts that haven’t developed fully. Sometimes described as “empty sacs,” hypoplastic breasts don’t look full and round. And the tissue that doesn’t develop during puberty may have trouble producing enough milk later.

I don’t think that hypoplasia and Mullerian anomalies are partners in crime, but hypoplasia can be caused by estrogen-mimicking chemicals like BPA and parabens in fragrances, shampoos, and other girly things. Good reasons to avoid them.

So I don’t know for sure that I have hypoplasia. Most obgyns don’t talk about it because it is truly more aesthetic than medical in its implications – that is, until you start breastfeeding. In fact, in one report I read it’s mainly women with hypoplasia who sign up for breast augmentation, feeling something was “off” about their breasts. If I asked a plastic surgeon I’d probably get an answer. Until then, this is all self-diagnosed – but with the photos available on the internet I’m pretty darn sure I’ve got this.

The main symptoms, if they can be called that, are:
Widely spaced breasts, over 1.5 inches apart (check)
Breast asymmetry, with one breast larger than the other (check)
Stretch marks on the breast (check)
Tubular breast shape (um, check?)
Really big areola
Absence of breast changes in pregnancy or post-partum (kind of)

Big breasts and little breasts alike can be hypoplastic. It’s the shape and placement that matters most. Finally, an explanation for why I always felt like a grown woman with a 12-year-old’s chest. Let me put it this way – I was always jealous of the way my friends could fill out shirts. A good push-up bra often gave me little cleavage, cleavage that usually went up, not together, making my boobs look like lumps of fat and not desirable objects. In fact, in order to get the kind of cleavage where my boobs would meet in the middle, I’d have to really force them together to the point of pain, and still I’d get nothing more than a line.

Don’t get me started on the lopsidedness. It’s only gotten worse with the pregnancies, and it would make me laugh more if it wasn’t so sad-looking.

“But you’re breastfeeding now, so why does this matter to me?” I’ll tell you why this matters. Consistent with the theme of this blog, know your body, your medical history, and get a thorough evaluation especially if you have trouble TTC. Some women with hypoplasia can successfully breastfeed, but not as easily as “normal” women. They need more support: physical, emotional, and moral. Their lactation consultant will want to be more aggressive about feelings, or be open to discuss supplementation if needed. And she will need to forgive herself for something she cannot change or control.

The Sjogren’s connection

One night, halfway through my daughter’s evening “cluster feeding” session, where she nurses for hours gathering all the calories she’ll need for several hours of sleep (NOT COMPLAINING that she sleeps 7, 8, sometimes 9 hours at night), my husband brought me a glass of water.  Dutifully, he had read that everytime you nurse you should drink a glass of water.  More water = more milk, as one of my nurses had said.  “Here you go, my dry wife.”

“Oh my God,” I said.  “That’s it!”  Eureka – maybe it’s the Sjogren’s!

As I type this, I have a dry mouth and I’m wondering where my water is.  It’s not because I’m breastfeeding.  It’s because I have an extremely mild case of Sjogren’s syndrome, diagnosed about four years ago by none other than an opthamologist.  I had been experiencing discomfort with my contact lenses, and it turns out I had developed cysts under my eyelids from dry eye and from not changing out my contacts enough, and wearing them too long during the day.  My doctor, concerned about a woman so young having dry eye like me, sent me to a specialist in autoimmune diseases.  The specialist listened to my case and a blood test confirmed his (and my doctor’s) suspicions: I had Sjogren’s syndrome.  It rarely shows up in women younger than 40, and as it was I seemed to have a mild, manageable case – even my bloodtest was borderline, my results being the lowest count of antibodies you can have and still be considered to have the disease.

In Sjogren’s, your body’s moisture producing glands don’t produce enough moisture.  Oh, don’t worry, I still sweat plenty.  But I’m always thirsty – rather, I need liquids to help me swallow my food.  I have had a ton of cavities though I take care of my teeth – because I don’t make enough saliva to kill the bacteria in my mouth.  I have dry skin and moisturize daily, even in the summer.  And I have dry eye.  It’s really not that bad, compared to people who have to take medication for their Sjogren’s.  I’m good with just a few changes to my routine. A year of Restasis, for instance, rid me of the cysts on my eyes and I’m vigilant about changing my contacts on time and not wearing them for 16 hours a day.

While there’s sparse studies linking Sjogrens to trouble with breastfeeding, there is anecdotal evidence on the internet. And it seems logical to me. Rather than reiterate what is out there, here is my favorite article by a Sjogrens formula-feeding mom:

Fearless Formula Feeder – Sjogrens

But if you need something more scientific, here’s a great response on a breastfeeding website:

Medical professional response about breastfeeding with Sjogren’s

When I had my eureka moment, my wonderful husband shared in my response. “That makes a lot of sense,” he said, and reiterated his support for making a bottle of formula whenever needed.

Love him.

Still, I said before that I had two theories about medical conditions preventing me from having a great milk supply, and the second reason is a little more graphic and personal. It is also pure speculation on my part – it’s never been confirmed by a doctor, but then again I never brought it up. How do you explain to your doctor that you think your breasts are shaped weird?

The breastfeeding freakout, part 2: The odds are still against me

Let me start this post by saying that with better support from a caring lactation consultant, I have been able to breastfeed my daughter better than I was my son.  I’ve heard that milk comes in better the second time around.  I also advocated harder for support and knew a little bit more about it, having already done it.  Still, my daughter gets one, sometimes two, bottles of formula a day.  And trust me, it’s not for lack of trying.  I have come to the conclusion that the odds are still against me: my body is just not capable of producing enough milk for a baby.  After a year and a half of wondering, I have two new conclusions as to why that is.

Plenty of websites and medical professionals, lactation consultants included, love to tell you that if your baby fusses while breastfeeding, it’s not because you don’t have enough milk: “It’s just a growth spurt.  Hang in there!”  “Every woman can breastfeed successfully if she tries hard enough.”  “There are very few reasons why a woman couldn’t breastfeed successfully.”  Did you hear that last one?  There are reasons why you wouldn’t be able to breastfeed.  The ones usually stated have to do with the immediate health of the mother – surgery or illness, for instance.  It’s extremely difficult to find any information on true medical diagnoses that might lead to a woman not being able to breastfeed – a diagnosis that she might have known prior to pregnancy and might have been able to seek more support or at least prepare for supplementing, mentally, physically, and let’s face it, economically.  Formula ain’t cheap.

My daughter lost 12% of her baby weight while in the hospital before I began supplementing her with formula, the same as my son.  Her fussying and crying was exactly the same as his.  And the look of relief, “Ahhh!  Food!  Now that’s what I’m talking about!” was the same as my son’s once her father gave her the first bottle and first taste of formula.  It was an easier decision to make in the moment to supplement, having had to do it once before.  Still, all the doctors, nurses, and lactation consultants assured me that I could stop once my milk came in.

A few days later, I began to finally hear the puff-puff noise of my daughter swallowing while feeding.  What a satisfying sound.  Yes, I did it!  I thought.  I am woman after all!  Half-a-uterus be damned.  But by 7 or 8pm, the fussing continued or worsened, and I begrudgingly continued supplementing with a bottle.  She gained back the weight she needed to and passed her checkups with flying colors.  She was perfect, right on track.  No more, no less.  “You can stop with the formula now,” the pediatrician said.

Well, easier said than done.  In fact, there has only been one or two days in the last seven weeks that my daughter didn’t have formula, not including the first few in the hospital.  More than once I broke down in tears after hours of crying, fussying, and sucking: “Why can’t I be enough?  Why can’t I be enough for her?”  I asked myself if she was supposed to be happy between feedings, like the doctor said she would be, why is she still cranky, tired, or hungry?  She’s not colicky, because I can soothe her… with food.

I tried another “nursing vacation” where you do nothing but nurse for days.  And guess what?  As with my son, it didn’t work.

So I started wondering again, Surely this isn’t for lack of trying.  What might be the cause, something that no one talks about because they don’t want to give you an excuse for giving up on the very difficult work of breastfeeding?

The first clue dawned on me one night as my husband brought me yet another glass of water.

The hidden costs of daycare

I took my son out of daycare the week I had my daughter.  He had been in daycare for a little over a year and he had a great time there.  We paid a lot of money to have really great care, but no amount of money could really change some of the drawbacks to having him in that setting.  So for those of you contemplating using a day care facility for your little one once you go back to work, here’s my lessons learned.

First, the positives:

  • For kids with no close relatives (geographically, or in age) or siblings, day care helps them learn to share and live with others.  My son LOVES his sister and I think it’s because he was around lots of other little kids all the time.  He’s also great playing with other kids.
  • I could always rely on day care being available.  It was my responsibility to get him there, not to wait for someone to show up at my house.  And I could rely on them having plenty of supervision and qualified caretakers available.
  • My son learned things he wasn’t learning at home, like baby sign language, which has been a huge help.
  • For me, I got to hear advice from other moms and teachers, which was helpful as a first-time mom. They taught me about mum-mum cookies, showed me it was ok to fasten a diaper tightly, and reassured me about normal baby behavior. I am grateful to his early teacher for sharing their stories with me, supporting me, and showing him as much compassion as they did.
  • My son loves his sister and plays well with others. He was always a social baby and I think he did well in the day care classroom environment.
  • I didn’t have to think of clever activities to do – his teachers did that for me and he came home with projects and art work, and sometimes a card made of his hand and footprints that made me cry.

The negatives:

  • My son learned things he wasn’t learning at home, like throwing his food off his tray when he was done with it.  I know he picked that up from other kids at school.  It has taken a month to unlearn this habit – now he politely pushes his food away and says “Done,” or sometimes signs “done.”
  • My son was constantly sick.  While it took almost six months for him to develop his first ear infection at day care, he had three ear infections within a period of six weeks and was on antibiotics throughout the holiday season.  He had a runny nose… always.  We went through a box of tissues a week – and that’s just with mornings, evenings, and weekends!  He was never a fully healthy kid.  Everyone says it gives kids a greater immune system later for school, but…
  • I had to leave work to get him when he was really sick.  Because he was sick a lot, I had to use a lot of my own sick time to pick him up, rush him to the doctor, and stay home with him while he recuperated.  Some weeks I only worked one day and struggled to keep up with my job.  I might as well have been a stay at home mom those weeks!
  • In addition to the monthly fees, there were always fundraisers or other things happening that required additional money.  From candy sales to book sales to holiday candle sales, there was always another ask for cash.  Then twice a year there was staff appreciation collections done by the parent council.  Not to mention things we had to purchase for class parties (such as food, valentines, cards, books, etc.).  And whenever we switched classrooms or celebrated a major holiday, I bought something small for his teachers.  There was something every month.
  • It was downright expensive.  Really, really, expensive.

I wish someone had told me about how much my son would be sick.  I knew what I was getting in to with the tuition of managed day care, but I wasn’t counting on the stress of getting that phone call to pick him up.  I had one hour to pick him up from the time of the phone call; one time the poor guy was in quarantine because of a goopy eye which they believed was pink eye.  So I usually had less than an hour to find or call my boss and explain the situation, send emails to anyone with whom I had meetings later that afternoon to inform them I’d cancel and reschedule, leave notes or sign timesheets if needed, let people in the office know how to reach me, and call the pediatrician and get an appointment.  (Oh, and if you’re pumping at work, don’t forget your breastmilk).  I wish I was better prepared for it.

So there you have it.  If you’re considering going with the option I did, instead of a babysitter, nanny, or relative and you’re returning to work, here’s some things to ask about when you visit the facility.  And be prepared.