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.

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If you’re reading this, you probably have a pre-existing condition

And, if the TrumpCare repeal of ObamaCare is approved tomorrow in Congress, your state may be able to allow insurance companies to charge you more or even deny you coverage for it.

Many people in the US population suffer from health concerns that can be classified as pre-existing conditions: asthma, diabetes, high blood pressure, cancer, heart disease, and yes, even pregnancy and infertility.  Unlike our Mullerian anomalies, which are congenital (meaning we were born with them), some of these pre-existing conditions may have come about from environmental conditions – such as secondhand smoke or contaminated water – or from personal choices one has made – such as smoking or those supersized fries.  Sometimes cancer or heart disease happens to the “healthiest” people.

I’m not going to let someone turn me into a nameless number and decide I don’t deserve coverage because my parents smoked in the car.

I’m not going to stand by while children with neuroblastoma or leukemia awaiting expensive treatments like chemotherapy are told they can’t get life-saving treatment because they can’t afford the premiums, were placed in a high-risk pool and priced out of coverage.

I’m asking you to call your representatives and find out where they stand on this latest TrumpCare bill.  If they are opposed, thank them for protecting your right to affordable coverage.  If they support TrumpCare, tell them about your pre-existing condition and why it’s important to you – and your (potential) family – that pre-existing conditions continue to be fully protected under any new healthcare law.

You might also want to find out where the $600 billion in tax breaks in the law are going – and how lawmakers intend on making up for that $600 billion deficit?

Need to find your representative?  Here’s an easy finder.

The Affordable Care Act and Infertility, Revisited

Several years ago, during the heyday of this blog and my adventure as an infertilite, I wrote a little ditty about how increasing Americans’ access to health care was a good thing, and that the law that would become known as “Obamacare” was particularly good for women.  Little did I know that post would become one of the most read and searched for of all the posts in this blog.

So I’m going to do it again.

On the “verge” of “repealing and replacing” the Affordable Care Act (ACA, aka Obamacare), we face a lot of unknowns about what will actually happen.  A draft of the first version of the bill was circulated just 24 hours ago (notably to news outlets that have been denied entry into the White House Press Room), but it’s still just a draft and there may still be many battles to fight.  Therefore it would be a waste of my time to simply go through the draft and say all the problems that are wrong with it.  Instead, I’d like to give you the information to take to your representatives – local, state, and national – so you can tell them how you, fellow infertilite or concerned citizen, are personally impacted by the benefits of the law.

Are you a woman with health insurance?  If so, you’ve probably noticed that your annual visits to your OB/GYN, mammograms and other screening procedures, and birth control contraceptives are covered.  If you have been pregnant in the last few years, all of your visits pertaining to pregnancy, whether to your general practitioner, a midwife, or MFM specialists, are covered.  The birth is covered, too.  Providing for well-care visits and pregnancy-related care is a national mandate of ACA.  The proposed repeal and replace bill removes the national mandate for insurance companies to cover pregnancy, meaning that it will be up to your state and/or the marketplace to determine how much coverage is provided for and how much you would have to pay out of pocket.  Which means that, should you happen to only have access to plans with minimal coverage, you might have to choose between keeping your electricity on and paying for your hospital stay.  Tell your representatives that providing for pregnancy-related care is a basic human right.

Do you have a pre-existing condition, such as, I don’t know, infertility caused by a uterine abnormality?  Under ACA, an insurance company cannot deny you coverage based on pre-existing conditions.  The draft bill released yesterday keeps most of this part of “Obamacare,” but does limit the kinds of conditions allowed under protection.   Tell your representatives to keep this protection of coverage for all people regardless of pre-existing conditions.

Do you want to wait a few more years to have a child just so you can get a bigger tax break on your insurance?  Currently, the ACA provides subsidies to cover some of the cost of an insurance plan based on your income, so that the burden of coverage is more evenly distributed.  The draft bill proposes that older people, who generally are sick more often and have more medications, would get a bigger tax credit than a healthy 30-year old – almost twice as much.  But where is the equality in this situation when the 30-year old might more likely have one or more dependents who need coverage, and family-level insurance plans aren’t exactly a bargain.  Tell your representatives to keep tax credits for health insurance based on need, not on an arbitrary factor such as age.

Do you think your property taxes are too high?  You might be wondering what property taxes might have to do with health insurance, so let me explain.  Services such as Medicaid are provided by your county in part from federal money that they are granted.  Republicans have talked about creating “block grants” of money, essentially capping the amount of federal money states have access to, which leaves states, counties, and cities in a terrible predicament: do we cut services to people on Medicaid – for instance, do we close nursing homes which would displace seniors and increase unemployment in our community for the doctors, nurses, and workers who worked there – or do we find another way to pay for it?  And they’ll likely find another way to pay for it through your property taxes.  Tell your representative to keep Medicaid expansion.

Finally, I’m going to address the issue of Planned Parenthood, which under the Republican bill would lose all federal funding.  Supposedly because, and solely because, it provides access to abortion services.  What they don’t tell you is that the other 97% of services provided by Planned Parenthood to men and women across the country include preventative health exams, providing contraception, tests and treatments for STIs, Pap smears, breast exams, and outreach to schools and college campuses.  One in five women have reportedly visited a Planned Parenthood at least once in her life (see the link here).  I know abortion is a highly personal topic and questions about life run so morally deep I can’t even begin to illustrate the range of them here.  But I do know that this country was settled by a brave group of individuals at Plymouth who were considered outlaws in their home country for their beliefs and who sought to find a place where they could live as they chose in peace.  Tell your representatives to let us continue to live our life as we choose, to keep our choices for what we do with our bodies our decision, not decided for us by lawmakers, and keep the funding in Planned Parenthood.

I will continue to update the blog as progress on the health care bill continues.

TMI

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.

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.

What made the second c-section birth better

I was really dreading having another c-section.  Mostly because the memory of the first one is fresh in my mind – how painful it was to sit up, much less walk for the first few days.  I remember feeling helpless in the hospital bed, unable to sit up enough to reach my son who was crying for a diaper change.  It was a terrible feeling – not just the pain, but the inability to move like I wanted to.  Afterward, I wasn’t looking forward to the restrictions – not being able to lift my son, or go up stairs too much, or even drive for a few weeks.  But without an option, I had to resign myself to the repeat surgery and its aftereffects.

I did have the option, though, in hospitals given that my doctors practice in three different area hospitals.  I chose (after discussion with the doctor who would be performing my surgery) the smaller, local community hospital that’s near my town.  With my son I went to a large city hospital with a full NICU unit, just in case there were any issues with my son and his size.  With my daughter, who was growing really well and above average on her weight, I felt less of a need to make sure I had a huge medical facility.  Neonatal care was available at that hospital if I needed it.  And now looking back, I enjoyed that hospital stay much more than I enjoyed the one at the larger hospital.  While I realize my experience is highly specific to these two hospitals, I thought I’d outline some of the distinctions that made my second visit a more pleasant one.

1. Convenience.  The community hospital is less than 10 minutes from my house, while the city hospital is 30 minutes on a good day.  With a little one at home, being so close was handy for my husband to run home and take a shower, and for my mother and sister who were helping to care for my son and who don’t know the area well.  For my 6am check-in appointment for surgery, it was nice to only leave 15 minutes early rather than more than half an hour.  And there was no charge for parking.

2. A smaller, quieter facility.  I was the only scheduled section the day I gave birth; and from what I could tell I was one of the only people in recovery for a while.  My recovery room was the furthest from the nurses’s station and entrance – the last one on the floor – so it was furthest from outside noise.  When there was a code red or blue in the hospital, it was difficult to hear from my room.  No one was wheeled past my door.  It was nice.

3. Nurses were friendlier… and they actually came when called.  In the large hospital it might have taken an hour for a nurse to come in when called.  In this case, if my nurse wasn’t available they sent someone else in – which was the case when I wanted to stand up for the first time.

4. Pain control was more of a priority.  Seriously, you should ask about this at any hospital you are considering.  In the bigger hospital, you had to call for your nurse to bring you pain medication – and as mentioned in the previous bullet, that could take an hour before they even showed up to see what you wanted.  This time around, the nurses and the lactation consultant stressed making my comfort a priority – if mom isn’t feeling good, she’s no use to anybody, especially the baby.  The nurses were always concerned about my pain level.  Yes, I did have to call for medications a few times, but they were prompt and sometimes scolded me for waiting so long to call (since I wanted to see if I did need them or not… and I really did).

5. I had more than 5 minutes with a lactation consultant.  Her office was two doors down from me, as a matter of fact.  She asked that I call for her at every feeding while she was on her shift.  She sat patiently with me, reassured me I was doing everything right, and told me how much further along with breastfeeding I was than people are usually.  She checked in before she left to teach a class.  I saw her a lot and I didn’t feel guilty about it one bit (unlike at the other hospital when I was told, “You know, people usually only see a lactation consultant once before they go” after I had seen her twice).

6. I felt listened to.  When I was concerned about my daughter’s weight loss, her constant crying, her constant nursing (to what felt like no avail to me), all of my nurses were patient and explained options to me.  When I described what happened with my son, they listened but reassured me each pregnancy is different.

7. Even the cafeteria workers took pride in their job, even if they realized the food they were delivering wasn’t so great.   They were very kind to me, always offering to make something off the menu if nothing sounded good.  (I never took them up on that offer).  One morning the woman had an extra food tray (like I said, I was at the end of the hall which usually meant I was the last to get food), and she gave it to my husband so he wouldn’t have to go to the cafeteria and pay $3 for yogurt.  Super nice.

8. Between my husband and I, we had a connection to at least two of the nurses who treated me throughout my stay – that we knew about.  One of my surgical nurses during the birth was connected to me through someone at work, and one of the head nurses requested to be my nurse because she knew my husband and his family from high school (she was the nurse there).  While sometimes people might find it annoying to know someone everywhere you go, I can tell you this much – I don’t mind knowing people at a hospital, since I think you’re bound to get better service because if you don’t, then everyone will know about it.

9. I had two anesthetists with me during surgery.  In the large medical center, I had a nurse anesthetist.  She was great, sure.  I flinched during the spinal – actually, I tensed up pretty bad, which you’re not supposed to do – and later I realized it was because I was ticklish on that side on my back.  So the second time, I warned everyone who would listen that I was ticklish, and to please warn me when things were happening with the spinal.  And the second time, I had two people working on numbing me – a nurse anesthetist and the actual anesthesiologist.  They were both phenomenal, but it also added two more people to help talk me through the process and keeping watch over my vitals and state of mind.  It helped they both had a sense of humor and put me at ease.  Whereas the nurse hadn’t warned me during the birth of my son that lightheadedness, nausea, and a sense of panic are all side effects of the anesthesia, the anesthesiologist was very forward in asking how I felt and told me to tell him the minute I felt anything different.  I told him once I started feeling lightheaded, and he put a hand on my forehead and said, “Yep, you’re getting a little sweaty, a little clammy.  Don’t worry, perfectly normal.  We’re going to give you a little something to make you feel better.”  That. Was. Awesome.  I couldn’t have asked for a better team.

I hope you will be able to ask some tough questions and take a critical look at your birthing center, wherever it may be, and think about what’s important to you.  Privacy, quiet, pain control, accessible nurses…  You may think you know what you want – if you’re like me you think you don’t want a lot of pain medication, but then you do – so just keep an open mind, and I wish you the best of luck.

Oops, I did it again

At my two-month checkup after giving birth earlier this year, my OB/GYN told me I could get pregnant again before I even got my period back.  I kind of rolled my eyes at her and said, “Are you serious?  Yeah, I don’t think that will be happening.”

“You’d be surprised,” she said.  I countered by reminding her it had taken me two years to finally get a pregnancy to stick.  “You never know,” she said.  I dismissed her advice.  Given the fact that I had beaten the odds with my son at every turn, as I’ve detailed throughout my early pregnancy, I really didn’t think I’d have the luck to beat the odds again.

I spent the first few months as a new mother panicking about the idea of raising an only child.  I worried that he would be spoiled, unable to socialize with others, not having any playmates growing up.  I worried that in old age he would be solely responsible for my husband and I, that he would have no one else to confide in.  I thought about my relationship with my sister, and my husband’s with his siblings, and I wanted those same bonds to exist for my son.  And I dismissed my feelings and resigned myself to being a great mom even if that meant only being a mom of one.

Well, here I am, 12 weeks pregnant, against all odds.  I am still holding my breath, as if none of it seems real.  And knowing what lies at the end of the road, I’m a little more nervous about another c-section.  Sometimes ignorance is bliss.  My OB/GYN group this time around is taking a wait-and-see approach to my care; “It’s possible you just make small babies,” one doctor said.  “That’s just how your body works.”  At this point I feel utterly clueless about how my body works.  Why now and not four years ago?  What about my body is so different?  It’s older now; I thought you were supposed to be more fertile when you’re young?

I’m already fielding questions, again somewhat unexpected, that seem somewhat insensitive to the infertilite journey.  “Well, I heard your body is more fertile after being pregnant,” said one nurse.  This doesn’t seem like a statement of fact to me; and she’s a nurse.  “Are you still considered high risk even though you’ve already been stretched out?” said another person.  And my answer: “Yes, I am,” because the uterus returns to its usual size after pregnancy, which for me is the shape of a deflated balloon.  A little deflated banana balloon.

Here we go again!  I will be tracking both responses to my pregnancy as well as observations going through this for a second time.  For me it is all about getting through one day at a time, and being thankful for the family I’ve been blessed with.  And my wish for you is to give you Hope, that though it seems preposterous, though it seems far-fetched, though it’s something you might roll your eyes at, it’ll happen for you and sometimes when you least expect it.