Get Out and Vote

There are several anti-abortion amendments on the ballots this November, but two that are particularly relevant to me. Amendment 1 in Tennessee, where I currently live, and Amendment 67 in Colorado, where I went for my late-term abortion.

Amendment 1 states, “Nothing in this Constitution secures or protects a right to abortion or requires the funding of an abortion. The people retain the right through their elected state representatives and state senators to enact, amend, or repeal statutes regarding abortion, including, but not limited to, circumstances of pregnancy resulting from rape or incest or when necessary to save the life of the mother.” Assuming my understanding is correct (and I’m pretty sure it is, since I’ve read plenty on it), the amendment wouldn’t initially change abortion laws in TN. Instead, it would give politicians the power to make any changes they want later on, including banning abortion entirely, even in cases of rape, incest, or danger to the mother’s health (and presumably, situations like ours where it was in the baby’s best interest, to allow them a quick, easy death instead of a painful, protracted one).

The most common defense of this amendment that I’ve seen has been that it is intended to allow further regulation in order to make abortions safer for women. But, “If they’re actually worried about women’s safety, and the ‘women who have died’ obtaining abortions in other states, then the measures they’re trying to take will only ensure that happens more frequently. The most certain way for a woman to seek insufficient medical care is enacting rules so stringent they force most currently legal abortion clinics to close. See Texas, where all but 8 clinics were forced to close after recent legislation (that the supreme court has now overturned). That’s when women are forced to go to back-alley, black market-type places, or here in Texas they go across the border. I mean, have you even SEEN Dirty Dancing? (Ok, kidding…sort of). A recent study found that getting a legal abortion is safer than childbirth — much safer. So safety clearly isn’t an issue.

Finally, if anyone thinks this is about ‘safety’ and isn’t a pro-life measure, it specifically says on the Yes on 1 website, ‘The wording of this Amendment was carefully drafted by the nation’s top pro-life constitutional attorneys and organizations so that it would be compatible with what we are trying to accomplish.’ If you’re pro-life and that’s why you want to vote yes, then fine. But own that. Don’t try to pass this off as something to protect women, because it does the opposite.” (Quote from an online friend.)

Also, “a common argument (to restrict abortion)… is that requiring admitting privileges by the physician performing the abortion will protect women’s safety. However there are no demands on other facilities that perform much riskier procedures. The mortality rate for a colonoscopy is more than 40 times greater than abortion, but there are no bills requiring gastroenterologist to have admitting privileges. The logic doesn’t hold. The restrictions are to make abortions harder to get, not to protect women… The harder it is to get an abortion, the more dangerous it is for the woman.” (Also from an online friend.) And I will say, when we first realized that we were going to have to have an abortion for our daughter’s sake, it was made clear to us (without anyone saying it outright), that if we couldn’t get to Colorado or another state where it would be legal, our doctors would help put us in contact with someone who could do it illegally for us. Banning abortion absolutely will not stop women from having them, it will only make it more dangerous for them when they do.

Basically, I am all for making abortions safer, but that isn’t what this amendment will accomplish. It will put far too much power in the hands of politicians to make decisions that should be between a woman and her doctor, in consultation with her family and her faith. Abortion simply isn’t a black and white issue, and I don’t think politicians should be deciding what’s acceptable and what’s not for me. Like I said, this amendment opens the door on banning abortion entirely, even in cases of rape, incest, or danger to the mother’s health (or baby’s best interest). It also could wind up leading to a “personhood” law, which leads us to Amendment 67 in Colorado.

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Amendment 67 is what is known as a “personhood” amendment. “The official ballot question reads as follows: Shall there be an amendment to the Colorado constitution protecting pregnant women and unborn children by defining ‘person’ and ‘child’ in the Colorado criminal code and the Colorado wrongful death act to include unborn human beings?” (source) This is the third personhood amendment to be proposed in Colorado, and the first two were voted down. From what I’ve read, this one came about as a result of a drunk driving accident that killed a woman’s unborn child. As it stands, the drunk driver cannot be charged with murder, because an unborn child isn’t considered a “person” legally. Having lost three unborn babies, including one late-term, I sympathize. I really, truly do. But the consequences of a bill like this are SO much farther reaching than just giving “justice” in a situation like this. “Here’s what Amendment 67 would really do:

  1. Outlaw all abortion in Colorado, even in cases of rape and incest.
  2. Ban some of the most common and effective forms of birth control, including the Pill and IUDs.
  3. Make it illegal for a pregnant women with cancer to choose treatment that could save her life.
  4. Restrict options for women wanting in vitro fertilization.
  5. Any birth that isn’t a live-birth — so miscarriages and still births — could be deemed suspicious deaths and would be investigated by police.” (source)

I lived in Colorado when I had my two miscarriages. “In El Salvador, when women come to hospitals seeking treatment for a miscarriage, they can be detained until a forensic vagina investigator can arrive and perform an exam to see if they had an illegal abortion.” (source) This is something I could have been subjected to, had this amendment been in effect. Certainly my late-term abortion, which we procured in Colorado as a selfless choice to give our daughter a relatively quick and easy death after her brain was destroyed by severe hydrocephalus, would have been impossible. And the doctor who helped us is older; his home is in Colorado. If this amendment passes, I don’t know that he’ll choose to move to one of the two remaining states where he could legally continue his practice. He might just choose to retire, and then we’ll be down to only two doctors in the entire country who will help women who face an impossible choice. Here’s a great article on the realities of what it would be like if abortion were to be banned entirely, as this amendment does in CO. What if Abortion Were Illegal? One example: “If abortion were illegal, women with unwanted pregnancies would seek out home remedies. They would try to induce abortions using methods they had heard on the grapevine, passed from person to person, or order abortion-inducing pills online and take them at home. Some would take the wrong amount, or at the wrong time in the pregnancy, and end up hospitalized.” Once again, women would not be safer or better off because of this amendment. If you’re pro-life, I understand; I was pro-life up until my early 20’s. But this amendment is much, much too far-reaching.

Outlawing abortions doesn’t stop them from happening (or even lower the rates). Like I said, it only makes them more dangerous. If you are truly pro-life, and you truly want to stop abortions, there are two things that have been proven to help lower the abortion rates. First off, birth control. Both easy access and proper education are critical to stopping abortion. Because obviously, the fewer unwanted pregnancies there are, the fewer women will feel the need to abort said unwanted pregnancies. Unfortunately, it is frequently the same people who try to ban abortion who advocate for abstinence only sex education (which has repeatedly been shown to be ineffective in lowering teen pregnancy rates) and limited access to birth control. If they truly want to lower abortion rates, they should be doing the opposite.

And secondly, if you want women who have unwanted pregnancies to choose to carry them to term anyway, provide better support for women so that they can afford to have and raise their children. “The reasons women give for having an abortion underscore their understanding of the responsibilities of parenthood and family life. Three-fourths of women cite concern for or responsibility to other individuals; three-fourths say they cannot afford a child; three-fourths say that having a baby would interfere with work, school or the ability to care for dependents; and half say they do not want to be a single parent or are having problems with their husband or partner.” (source) “If we found a way to offer more aid to parents, if we mandated things like paid maternity leave, subsidized childcare, and universal health insurance for pregnant women and for children, some women who would otherwise abort would almost certainly decide to carry their pregnancies to term. But the odd thing is, those who identify as “pro-life” are most adamant in opposing these kind of reforms… If those who oppose abortion really believes that abortion is murder, they should be supporting programs that would make it easier for poor women to afford to carry pregnancies to term. Instead, they’re doing the opposite. Overwhelmingly, those who oppose abortion also want to cut welfare and medicaid. Without these programs, the number of women who choose abortion because they cannot afford to carry a given pregnancy to term will rise. Further, they are working against things like paid maternity leave, subsidized daycare, and universal health insurance for children, programs which would likely decrease the number of women who choose abortion because they cannot afford to carry a pregnancy to term… This makes utterly no sense if the goal is to save babies.” (source)

So please, regardless of where you stand on the issue of abortion, take some time to consider what these amendments would really accomplish, and vote accordingly. Abortion, like so many issues in life, simply isn’t black and white. There is a lot of grey area, and these amendments completely fail to take that into account. The choice to terminate a pregnancy, electively or for medical reasons, is a deeply personal decision, and I truly believe that no good can come of giving politicians this kind of sweeping power to decide what is best for every woman and every child.

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Some more articles for those who would like to read more:

Vote to remove politics from abortion decisions

Tennessean: Amendment 1 a power grab, insult to women

Doctors urge ‘no’ vote on Amendment 1

Why I’m Voting Against Amendment 67 and Why You Should, Too: ‘Personhood’ is a Wolf in Sheep’s Clothing and Harmful to Women

Hello America, It’s Me, Colorado

How I Lost Faith in the Pro-Life Movement (Strongly recommend reading this! It is excellent and explains my points far better than I did)

Questions For Pro-Lifers (This raises some excellent questions about the realities of enforcing an abortion ban. I’d really like to get hear some genuine answers to these questions.)

Let’s Get Real About Abortions

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Our Candles

Here are the pictures I have from Pregnancy and Infant Loss Remembrance Day. Thank you to everyone who took the time to light a candle, both for us and for all the babies that have been lost.

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I said that our candle was primarily for River, and also for our two miscarriages. But that’s not all. It is also for Christopher’s cousin, my sister-in-law’s niece, Christopher’s good friend’s two babies, my good friend’s two babies, my half-sibling, my cousins, my uncle, Christopher’s sibling, and all the other babies out there who never got their chance at life. We remember and honor them all.

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Katlyn River, Loved and Grieved: A Story of Late-Term Abortion

I’ve wanted a baby for as long as I can remember. My mom says as a toddler in daycare, when kids’ parents showed up, I’d be the one getting them in their jackets and chivvying them to the door. I started working in the nursery at church with my mom long before I was officially old enough to do so, and had my first babysitting job at 12. I started working as a nanny shortly after I got married (couldn’t previously because those jobs don’t have insurance). So all that to say, I had been getting a bit impatient about the baby thing for a while. But my husband and I had the sense to take things fairly slow. We got married after almost 5 years of dating, and didn’t rush to have a baby afterwards. Still, around our 4 year anniversary, we decided it was time to start trying.

We got pregnant quickly, and were thrilled, but at 9.5 weeks I started bleeding and an ultrasound showed that the baby no longer had a heartbeat. We grieved, healed, and tried again, only for me to miscarry again, this time at 5 weeks. But finally, a few months later, just a month before our first baby would have been due, we got pregnant with what seemed to be our “rainbow baby.” I was due September 6th, just 4 days after my own birthday, and we were nervous, but happy.

Everything seemed to be going perfectly. The baby’s growth was on track, I was able to check the heartbeat whenever I wanted with the doppler my cousin loaned me, and we were finally starting to breathe easy and believe that this pregnancy might finally end in a healthy baby. Then at 20 weeks, during the standard anatomy scan, we were told that the baby (who we found out shortly after was a girl) had a moderate hydrocephalus. The ventricles of the brain are always supposed to contain fluid, but they should never be larger than 10mm at the most. Her’s, at 20 weeks, were both around 20mm. We were devastated, but still hopeful. At that point, there would be brain damage, because the fluid was taking up space that her brain needed to develop, but it could be fairly minor. And even the worst outcome with 20mm ventricles would still allow her a good quality of life.

At that point our options were explained to us, based on the different ways things might progress. If things stayed mostly the same, and the fluid build up didn’t get any worse, I’d probably carry to term, around 37 to 39 weeks, at which point she would come on out and they’d place a shunt (a tube that would run from the overfilled ventricles in the brain all the way to her abdomen, where it would drain the fluid). Then we would just have to wait and see how much her brain was able rebound from the compression it had been under from the fluid.

If the ventricles did keep growing, hitting around 30-40mm, they would recommend a c-section around 34 weeks. That’s when the risks of prematurity would cease to outweigh the benefits of early intervention, and she would be strong enough for the surgery. The treatment would be the same, inserting a shunt, and she would probably be in the NICU till around the original due date, so a month or two. In that case, we don’t really know what the damage might look like. It could be more severe, but since they’d be able to intervene sooner, she would have those extra two months of development without the hydrocephalus.

And if things got drastically worse, with the ventricles growing up into the 50, 60 or more range, then we were probably looking at no hope at all. She either simply wouldn’t survive, or we’d consider going to a state that allowed later termination, because at that point we really would be looking at a worst case scenario for her. There would be no quality of life possible.

We continued to go in for ultrasounds every few weeks. At 24.5 weeks, there was virtually no growth in ventricle size, which was encouraging. But at 28 weeks, they had increased fairly significantly, to something like 26-28mm on one side and 32-34mm on the other. That was a lot of growth in a relatively short time (four weeks), especially since she had another six to go for sure (remember they said 34 weeks was the earliest they could deliver, because before that the risks of prematurity would be too great, and she’d be too small to handle surgery anyway). We began making plans to deliver via c-section at 34 weeks, and started researching what we would need to do to get her the therapies she’d need, since she was definitely going to be special needs. I was scheduled for my first steroid shot, which would help her lungs develop and make the early delivery safer for her.

We had a doctor visit scheduled at 30w5d, which started off with another ultrasound. This one was just 2 weeks after the previous, which is close enough that the ultrasound tech wasn’t even sure she should bother taking measurements, because that’s not long enough to show much growth. However, the ventricles had enlarged significantly, to the point that the larger was up into the 40+ range. Worse, her head had not grown, and the increased fluid had further compressed her brain, so that the damage was now catastrophic. The neurosurgeon said that at that point the odds were in the “high 90’s” that she would never progress mentally beyond infancy. And she still had at least 3.5 weeks left before she could be delivered and the ventricle growth halted, so it would only get worse.

I don’t have any copies of her scans (nor do I want them), but a quick google search turned up some images that are comparable. The first is a moderate hydrocephalus. The fluid is the black area, and the surrounding grey is brain. The second is very similar to what we saw at this appointment. Basically the entire top half of her skull was full of fluid, so that the image was almost all black, with virtually no grey left at all. Her scan actually had even less grey around the edges than this image does.

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This news left us with three options. One, we could deliver at 34 weeks as planned, have the shunt inserted, and simply see what happened. More than likely she would survive, because her brain stem was still unaffected (meaning she would still breathe and her heart would beat, etc). When the brain is that severely compressed, there is some risk that when the pressure is relieved by the shunt, the brain will spring back too quickly and tear the blood vessels supporting it. The odds of that are only around 10% however, so she would probably live. But she would have no quality of life, no higher brain function, no ability to live in any sense of the word that truly matters.

Our next option was to carry to term, and let nature take its course. No shunt, or other form of drainage to stop the hydrocephalus. Again, she would likely live, but in this case not for long. It’s impossible to say how long it would take, but eventually the pressure would destroy the rest of her brain, and she would die. It would be a short and probably painful life, and cruel to both her and those of us who care about her.

Which left us with the third choice. We could go Colorado or New Mexico, and we could terminate the pregnancy. It had to be done before 34 weeks legally, and even then we had to provide proof that this is a case of medical necessity. But it would be quick, for her, just an injection to stop her heart. For us it would be a four day process, starting with the injection, followed by two days of gradually opening the cervix, and ending with basically a combination of delivering (though with very limited pain relief) and a D&C. Of the three choices, it was the one that would hardest on us, at least emotionally. There would be no chance to hold her, or to ever see her alive other than on an ultrasound screen. But of the three choices, it was the one that would be best for her. It would give her the grace of a quick death, instead of a protracted, painful one, or a life that offered her nothing at all.

And so we began to take steps to obtain a late-term abortion. My doctor here (who was amazing throughout all of this) provided us with the information for a doctor who would do the procedure. As it turns out, there are only three doctors in the country who will. The risk is just too high. There used to be at least one more, but he was murdered, while at church, ironically. We had planned to handle it as quickly as possible, but the doctor was out of the country for the following couple of weeks, so we had to wait for him to get back.

It also turned out that the whole thing is more complicated than expected. Growing up (in a fundamentalist Christian home, though I’ve since moved away from that), I always had this thought that there were women out there getting late term abortions all the time, for no good reason. Turns out, as I mentioned, you have to provide (fairly extensive) proof that it’s medically warranted. It’s also far more expensive than we expected. The price we were given, which was based on her size, was $25,000, and, unlike most medical procedures where you simply deal with the bill later, it must be paid up front. Thankfully for us, our insurance would cover it, but the standard procedure is for us to pay and then send the bill to insurance for reimbursement. And since there are no providers “in network” that do the procedure, our insurance company would be obligated to reimburse us for only whatever they thought reasonable, and leave us with the rest. In this case, the initial amount they approved had them paying a grand total of $700 of the $25,000 bill. But we’re fortunate to have very good insurance, and my husband was able to work with them to get an exemption (to basically count this doctor as in network), which left us only responsible for our deductible. They also told us that we’ve set a precedent for this type of situation, so if someone else with our insurance faces the same thing, they won’t have to deal with the hours on the phone and tons of paperwork to get the out-of-network exemption. Unfortunately, even with the extra couple of weeks it took, there wasn’t time to get them to approve paying it up front, so we were still forced to come up with the money ourselves.

I don’t know what we’d have done if our insurance didn’t cover it. There is an organization (a charity of some sort, I assume) that helps with the costs in situations like ours, but it’s based on income. We make enough that I doubt they’d be able to do much for us, but that doesn’t mean we have $25,000 just sitting around. And we had to deal with our travel costs no matter what, not to mention the sick leave my husband had to use for the week that were gone. (Again, we were lucky in that his company gave him an extra 40 hours of sick leave for it, but many people wouldn’t have that available.)  It makes me really, really angry that it was so hard. This situation was incredibly difficult already, and added to that was a ton of financial worries, travel, and stress, so that we could go to an office where every single employee is risking their life every day just by doing their job and helping people like us who are facing an impossible choice. We’re not just some flighty kids that made a baby and then decided that maybe we don’t want to deal with it after all. We didn’t make this decision because we were unwilling to raise a child with special needs and wanted to just scrap this attempt and try again. This was a baby that was badly wanted, but whose medical situation was so dire that the only kindness we could offer her was to let her go as quickly and painlessly as possible. We shouldn’t have had to go through so much to do something that’s already the hardest thing we’ve ever had to do. And the people who helped us should be seen as heroes, not murderers.

The two weeks between making the decision to terminate and actually doing it were hard, but not terrible. In some ways it was good to have that time to say goodbye, and not feel rushed. My husband spent plenty of time with me, including taking some extra time off work. Though at that point it hadn’t really sunk in. There were some tears when we first found out, but not really after. That came when we had to actually say goodbye, and go through with it, and continue on without her. Thankfully my husband didn’t try to pretend she was already gone. He still wanted to feel her move and talked about her. Part of me did want to put on baggy clothes and pretend I was just fat, but it wouldn’t have been right. We had the whole rest of our lives to mourn her, but we only had those last couple of weeks to be with her.

We did have maternity photos done. We wouldn’t have, but my amazing sister-in-law put the whole thing together. They have a cousin who lost a baby under similar circumstances, and she told my sister-in-law that we would regret it if we didn’t do it. So she called around and found us a photographer willing to meet us last minute (on a Sunday, no less), and a hair stylist who touched up my highlights and did my hair, and even a makeup person. She also paid for the photographer (the other two worked for free for us, though I tipped them). It was kind of hard to do, and I don’t exactly expect I’ll want to keep the pictures displayed to look at all the time, but I’m really glad we did it. This might be our only pregnancy (we may pursue adoption, though we’re not really thinking that far ahead right now), and I think the cousin is right that we would have regretted not having the pictures as a sort of remembrance.

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We’ve boxed up all of her things and put them in the attic. We are keeping pretty much everything for a future baby. To us they’re for our baby (and we will have one someday, one way or another), not for her specifically. I did choose not to use any as props in the maternity photos for that reason. That would have made them actually hers. The only exception, I think, will be the blanket my cousin made for her. For whatever reason, that feels like it should be kept special. I’ll have that, and I’ll be getting some sort of Christmas ornament as well. I never did get one for the miscarriages (I might yet), but she needs one.

My husband’s also getting me a ring with her birthstone, to wear with my wedding and engagement rings. It’s what I’d planned for any babies we had, this will just be in remembrance instead of just acknowledgement. We’re going to go with ruby, the July birthstone. She was due in September, then planned for August, and eventually July, so it’s hard to say which one is really appropriate. But the last date we were planning for her birthday was July 27th, and that’s the day I want to commemorate. September, I feel like, fails to acknowledge everything we went through, and in August we just had a general idea, not a specific date. I don’t want the day we terminated to be the one we choose to remember either, so as far as I’m concerned her birthday is July 27th.

So for now it’s just a matter of waiting for time to do its job, helping us to heal emotionally and (in my case) physically. It’s very slowly starting to feel a little easier, and while I’m sure there will always be bad days, I expect they’ll come fewer and farther between. We’ll be sad, but we’ll move on, and we won’t forget, but neither will it seem like such a huge, all-encompassing thing standing in our way forever. I hope so anyway.

The choices that we were forced to make will be controversial, but I’m not going to try to hide them either. It’s not fair for us to have to live with this as some big secret, nor do I think it’s something shameful or wrong that merits secrecy. And I’ve blogged all this so far in case someone else who is going through something similar finds it, and finds some comfort in it, and some reassurance that I, at least, understand what they’re going through, and there is no judgement here. I’m not ashamed of what we did. I don’t have doubts that it was the right thing to do. It wasn’t a selfish choice. If I was being selfish I’d have carried her to term, and had those days or weeks or months with her. Or maybe even have delivered early and had her get the shunt, and risked her never having any sort of life for the sake of that maybe 1% chance that she would be, not okay, but not quite as bad as the worst case. I didn’t want to give up the only time I could have with her. But our job as parents was to do what was best for her, even when it meant letting her go. And I’m not going to apologize for that, or try to hide it.

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Her name is Katlyn River.

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My Candle

So here’s my candle for Pregnancy and Infant Loss Remembrance Day. It’s primarily for River, but it’s also for my first two babies that miscarried.

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I’m guessing you’re probably wondering why the bright colors. Not really what one thinks of for a remembrance candle. I had a couple reasons. The first is that when I was looking for the craft supplies to make it, as I was browsing, looking for something that actually said what I felt, I really resented it. I was supposed to be browsing for supplies to make some scrapbook pages celebrating my daughter’s birth and first year of life, not to make a candle in remembrance of her death. So I picked colors that I felt like I would have used, if were making something actually for her. She might not have turned out a girly girl, but I am, so she would have been wearing a lot of pink until she was old enough to decide for herself. And sparkles. Lots of sparkles.

I also had a really hard time finding anything with the right words. There were sets about family, but our family never got a chance to be together. There were ones about remembrance, but they all mentioned memories, and the whole reason this is so tragic is that we never got the chance to make any memories together. And the ones about babies… she never got much of a chance to be a Daddy’s Girl either. These were the only ones that said anything that seemed to fit.

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Because that’s what the candle is for me, a way of saying I love my babies, and always will. It’s not like I need a specific day to remember; how could I forget? But sometimes it’s nice to take a moment to stop and actually do something about it, even if it’s just lighting a candle.

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Pregnancy and Infant Loss Remembrance Day

Pregnancy and Infant Loss Remembrance Day is coming up. http://www.october15th.com/ I’m not really doing much for it; it’s a little too raw yet, but we’ll light a candle at 7. We have a brick with River’s name and birthday at a memorial garden in Indiana (Christopher’s cousin who lost a baby in similar circumstances lives there, and got us the brick, and their bricks are together), and they do a ceremony for it, so maybe another year we’ll feel up to going to that.

Anyway, I just wanted to share. And if anyone would like to send me a picture of their candle, I’ll post them here.

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Just Some Thoughts

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Have you ever listened to a song and it was just so perfect and meaningful that you almost resent that anyone else can ever listen to it, because they’ll never understand how important it really is? I’ve got a couple of those going right now. Passenger’s “Let Her Go” (minus the use of the word “only”) and Imagine Dragons “Bleeding Out.” I actually don’t even ever listen to Let Her Go unless I feel like I need to have a good cry and get it out. And every time I hear Bleeding Out I literally see this montage of all these moments from the last few months, from when we found out she really wasn’t going to make it, to the whole week of the termination, and moving on without her. I could make one killer music video if I had some way to get those images out of my head and onto a screen. Though it’s funny because what I get from those songs is SO far from what the writers intended, but that doesn’t even matter. And why does listening to meaningful music help us to deal with things anyway?

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And one last thought, not related to music- I’ve mentioned it before, but it bothers me sometimes, that people don’t know about River. Some days I just want to tell everyone I meet. I want to pull out my phone and the pictures of her I have on it, and just show it to everyone. I don’t even know why, it just seems like they should know. And sometimes when I’m driving down the road I wonder about all those people in the cars around me, and what’s happened to them that no one really knows about.

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Where We Are Now

Sorry for the long gap between posts, but really, there hasn’t been much to report until recently. We were just kind of waiting for the next steps, but now we’ve gotten some test results back so I’ll get caught up.

A few weeks ago we went in and talked to the genetics counselor again. She covered the basics with us again of what kinds of genetic issues testing could show, and what testing they recommended we have done. There were two main types. One was having karyotyping done. This would allow them to look in detail at both Christopher’s and my chromosomes to see if anything was out of place, specifically looking for a balanced translocation. That test was one that we both needed, because a problem with either of us could be responsible for our history. However, she didn’t think it was likely that test would turn anything up. This was because typically the problems caused in the case of a balanced translocation don’t normally present with just hydrocephalus. The baby should have had more issues if this was the cause. And it seems the counselor was right, because our tests both came back 100% normal.

The second test was less relevant to our history and was more just to clear us on everything we could to give us peace of mind going forward with future pregnancies. It was a screening to see if we were carriers for anything (like sickle cell anemia, etc). For this one they only needed to test one of us to start, because we both have to be carriers for the same thing for it to be possible for it to be present in child (so if one of us carried nothing, there would be no chance of our kids having anything, regardless of what the other might be a carrier for). Remember the whole dominant/recessive gene thing from high school? Basically everything they’re testing for is recessive, so a kid would have to get two copies to have any issues, like the white coloring in the image below.

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If the one tested (me) turned out to be a carrier of anything, we would have the other (Christopher) tested. And as it turns out, I am a carrier for something, a rare kidney disease of some sort. Unfortunately I’ve forgotten exactly what and I don’t have a written record right now, but I’ll update this when I do. (UPDATE- It’s Nephrotic Syndrome Type 2. Steroid-resistant nephrotic syndrome is a disease that causes significant abnormalities in kidney function, often resulting in kidney failure. Symptoms can begin before age 2 years or later in childhood and the prognosis varies. However, with transplantation and careful medical management, affected children can live into adulthood.) That being said, it has nothing to do with River’s issues, and the counselor said that even without testing Christopher she can say the odds of us having a baby with it are very, very low (she actually said that this is why she asked if we were related, because the only reason he’d likely carry it too is if we were). Still, we will be having him do the screening as well just in case.

In the interim we’re proceeding on the assumption that we’ll be trying again in the relatively near future, probably in December. The doctor said to wait at least three cycles after things got back to normal. And more importantly, we have a cruise booked for next May, and I can’t be more than 23 weeks along or I can’t go, so it definitely won’t be any sooner. My cycles are still a bit wonky (last one was three weeks, not cool), so I’m going to start using OPK‘s and temping again so that I can sort of relearn my cycle and so I’ll be prepared when the time comes.

I’m also taking this time to make a genuine effort to get in better health. I’ve made drastic changes to my diet, which is going surprisingly well. As an example, a month ago on game night (we play Pathfinder on Tuesdays) I was getting Subway (white bread, american cheese, no veggies!) with a coke and doritos for dinner. For yesterday’s game night I brought leftover spaghetti squash with pasta sauce, kombucha, raw cashews, and some paleo pumpkin muffins, all organic. I’m also on liquid prenatals (they’re kinda gross, but it’s all organic, derived from plant sources, and much easier for my body to absorb) and some form of folic acid that’s easier for the body to process (L-5-methyltetrahydrofolate). I plan to add fermented cod liver oil in at least a month before we start trying again, but for now I figure I’m pushing Christopher enough on the increased cost for healthier food and better vitamins.

I’ve been to one meditation class and plan to go to another next week. I’m also planning to start yoga classes next week. Christopher has joined a gym, and hopefully he can take me with him this weekend (he’s working a lot, and neither of us are feeling too good today, so we’ll see) so I can see if I like it and join as well. I might even go see a reflexologist. (Honestly, I’m not sure I buy into that at all, but it might help, it won’t hurt, and worst case it’s still a nice foot massage.)

Basically, I’m at the kitchen sink stage of trying to do everything I can to have a healthy baby. Not, to be honest, because I think all these things will make a huge difference, though they certainly can’t hurt, but because at least I feel like I’m doing something. Having the tests come back clear (assuming Christopher’s screening is fine, which I am) is mostly a really good thing. If they hadn’t, all of our options would have been expensive (I was leaning towards embryo adoption, for those who are interested. I had never heard of it until recently, but it’s pretty amazing, and would have been the perfect solution for us if we’d found we couldn’t have our own children), and far more difficult than just trying again. But they would have given us much more confidence that we would have a happy outcome this time. As it is, we’re back in that limbo of not knowing and just hoping for the best, and we’ll be here for at least another year, until we’re holding a healthy, living baby. Still, I really do feel optimistic. I think I may seek counseling to deal with the anxiety when we do get pregnant again, but for now I’m just doing what I can and taking it one day at a time. And hopefully I’ll be making another happy pregnancy announcement in a few months, and this one will end well.

asd