Jul 30, 2012

on gravesites, due dates, and the after

Last week was Aminadav and Naava's due date (by 40 week standards, though I knew with twins I was never going to make it that far even under the best of circumstances). I found myself becoming increasingly miserable as the due date approached. It meant another degree of finality was closing in surrounding their death -- almost as if the possibility of their existence slightly existed in some alternate universe until that date came around and slammed shut any possibility. As if they existed in some suspended in-between until now, certainly not here, but the possibility not entirely gone, either. The difference between gone and really gone. I know it's wacky and illogical, but it is the best way that I can describe it.

I felt like we were supposed to do something special to commemorate the day but I wasn't sure what, and so I was left grasping for something that felt very elusive while feeling like I was failing extraordinarily to honor them properly. Should I buy a bundle of sunflowers -- too cheery? Light a candle -- tacky or a little macabre? Nothing was really speaking to me.

The day before I was positively wallowing in dread watching the calendar inch closer and closer to what never was and never will be. In order to cross between the research lab and the main hospital building to go to the coffee shop, I go through the traffic circle entrance of the hospital out back, where parents load their newborns into the car to take home.

That afternoon as I walked into the hospital, there was a family parked in the traffic circle with their two kids and newborn daughter. The father was videotaping the mom carrying her to the car narrating, "And here is her first time in the car! Here she is coming home!" Watching the happy new parents load their newborn into the car struck a raw chord. I couldn't hold back my tears thinking of my poor babies who never got to come home with us. I wasn't jealous, just so sad for Aminadav and Naava and sad for us, especially knowing that the babies coming home healthy now are their compatriots.

One thing that has grated on my conscious constantly is being physically so far away from Aminadav and Naava, with them buried in Israel and us here, and also not having a special place to go to that acknowledges them. One thing I have not written about at all here -- perhaps because until now it was too painful -- is the reality of what happens to babies lost during late pregnancy or shortly after birth in Israel.

While the notion of a proper burial applies, there is a long-held belief that parents of young babies should not participate in the burial and should not know where the baby is buried. Different chevrot kadisha (ritual burial committees) enforce this policy with varying degrees of strictness and leniency, but in the hospital they don't really present the different options to you -- you just sort of get stuck with whatever chevra kadisha serves that particular hospital.

At first, when we signed their bodies away to the chevra kadisha, I was pretty naive and I was just happy that my babies would get a proper burial and not be considered medical waste or some similarly horrible fate. I wasn't thinking about it so clearly at the time, but I didn't realize I might never find out where they are buried.

In the months after we lost Aminadav and Naava I began to wonder more and more where they were buried and began to develop a desire to find out and visit the place. In the process, I learned more & more about what this might entail. Not shockingly, I am not alone, and you can find many similarly-minded posts on the Israeli pregnancy loss forums, of women months and sometimes years later, trying to figure out where their babies are buried.

I learned that oftentimes it is difficult to just get in touch with the correct chevra kadisha and if you do, getting any information at all can be extremely difficult if the person you are in contact with thinks he is protecting you by refusing to give any information. If you are lucky enough to find someone willing to help locate the body, the records are sometimes kept shoddily, and especially if time has elapsed, it is sometimes impossible to find a record of the body. I also found out that the babies are generally buried together in mass graves that are either unmarked or poorly marked.

I know this reality may sound shocking and horrible to many, but this is the situation we are dealt in Israel. Of course now I would like to spread awareness among women in similar circumstances -- that at least there is a choice in which chevra kadisha comes for the body and that some are much more willing to involve the parents in the burial itself and the details surrounding it, but this was not information at hand for us when it was relevant.

I had a very strong desire to find out where Aminadav and Naava were buried before we left for Toronto, but I had an oversimplified fantasy of how we would find out before I started fact-finding and reading the forums. I have a wonderful book on pregnancy loss in Hebrew - כחלֹום יעוף - Like a Fleeting Dream, which to my knowledge is the only Hebrew language book on pregnancy loss written for religious couples. The book has a listing of phone numbers for the chevrot kadisha serving various Israeli hospitals. I thought we would just call the listed number, they would look up our babies in their records, and we would have our answer.

Of course it wasn't simple at all. After a long and convoluted goose chase, Y did succeed in tracking down the cell phone number of the man who took their bodies. However, he only finally succeeded getting his cell phone number the night before we left Israel, which made visiting them impossible. Also, I was really adamant that we try to track down the information before leaving because I figured that as more time passed, the chances of getting the information would just become increasingly slim.

Sure enough, the man remembered our babies as "the twins from Purim" (Purim is the Jewish holiday on which our babies died -- ironically, it is a particularly joyous holiday.) However, he would not agree to tell us where the babies are buried, at least not outright.  Instead, he spoke in riddles, I assume because he had a moral opposition to telling us, but at the same time had some empathy for our situation. We understood from what he told us what city and what cemetery the twins are buried in but not the location of the plot.

For then, that was all the information we had, and it gave me some peace at least knowing the location of the cemetery, but not enough. I thought if I could just go there, maybe I could find a kind person who works there who could tell us where they bury the small babies and since we know they were buried fairly recently, maybe we could deduce which plot.

But we were leaving Israel and it wasn't going to happen this way, at least not maybe until we got back. My babies are in some unmarked mass grave with the chance of ever identifying the spot dwindling with each passing month, I am moving 6000 miles away for the year, and I can't even visit their spot, I thought. Here I go failing them again. And again. First it was my body, now it is practically almost willful.

So on the eve of their due date, here I was more than 6000 miles away, with a vague general idea of where they are, and no way to properly visit or honor them. Thankfully, there is another part of the story:

Two acquaintances back in Jerusalem also lost babies this past year and subsequently became good friends (yes, it is both sad and ridiculous that we only became good friends after losing our babies, because they are two wonderful women). One of them delivered her baby stillborn during her 22nd week of pregnancy at the same hospital in the same room where I delivered Aminadav and Naava about 3 weeks later. Recently, she also got the urge to track down her baby.

She had a similarly difficult time tracking down the information (though it seemed very likely that her baby was in the same cemetery, perhaps even the same plot as the twins since it was at the same hospital only a few weeks apart). Indeed, she eventually traced her baby to the same cemetery. She and my other babylost friend, N, went on a pilgrimage together to the cemetery in an attempt to find the grave. It happened to be on Aminadav and Naava's due date.

Just like in my fantasy,  the staffer, a kind older man (Sephardi and very gentle as decribed by my friends) pointed them in the right direction and led them to three plots with small babies. Based on deductive reasoning, they figured out which of the three plots they think has E's baby, and they think Aminadav and Naava are in the same plot, too. They recited some tehillim (psalms) and placed stones on the grave for E's baby and for Aminadav and Naava, a Jewish tradition that signifies someone has visited the grave. The elderly Sephardi cemetery staffer and my friends recited the names of all of our lost babies and prayed for them together.

So, over the course of their due date, not only was the site of their grave discovered, but Aminadav and Naava got their first visit, not from me directly but from my messengers. Their names were recited, stones were placed, and my sweet babies were remembered by Y and me in Canada, and by two very special friends in Israel, N and E, who I am very blessed to have in my life. E reported that after the visit, she felt "this powerful urge to nap -- not in a tired way, but in a peaceful, relaxed way that I haven't felt in a long time."

I cried all morning, but not the sorrowful tears I cried the night before -- instead, these were more tears of relief. Relief that I felt right was finally done by my babies. Like E, I found some new peace, too. Thank G-d my friends decided to visit the cemetery on their due date. Thank G-d they found the grave. Thank G-d for these small blessings -- they amount to a big deal in my life.

Jul 22, 2012

I don't know what I want anymore

I know I haven't been writing much lately. I feel that I  have a lot of negativity and sadness lately and sharing my negative feelings over and over again serves no real purpose. Also, not much to update on in terms of action, since we aren't cycling right now.

I have received some good recommendations for clinics and doctors in Toronto, and I keep saying that I am going to set up some appointments, but something is keeping me from actually doing it. This is a real change for me because until now, I have always been extremely proactive and have often done cycle after cycle in quick succession. My governing philosophy has always been the quicker I can do whatever it takes to have a living child, the better, like ripping off a band-aid. 

Lately, though, I have had strong mixed feelings about how and when I would like to proceed. I really don't have a big problem with the IVF - I feel like I can keep doing it over & over as I have. It can be emotionally and physically exhausting, but it is sort of my norm and it is not disruptive to my normal routine and daily life in the way it was in the beginning. (Actually I will revise that slightly - it makes me feel pretty crappy and less productive in all other aspects of my life but I am used to functioning that way.)

For better or worse, it turns out that you can pretty much get used to IVF as a 'lifestyle' in the same way people with all sorts of chronic diseases get used to whatever repeated invasive treatments they need to keep their condition in check.

What I am having more trouble managing lately is the uncertainty - that I will go to such epic lengths to get pregnant in the first place, but that we still don't know why I need IVF to become pregnant and then the larger issue of whether I can have a healthy pregnancy that I am able to carry past viability. It feels like a cruel science experiment - mostly cruel to the to-be conceived baby - to attempt to carry him/her when my ability to do so, at least in my mind, is so gravely in question.

I am really terrified by the prospect of being pregnant again. It's a shame, because the IVF cycle we did so shortly after losing the twins, I was in a much better mindset to be pregnant again, and then I was of course very briefly pregnant again, but now that's over and I feel like I am in a much worse place than I was then to attempt another pregnancy.

I guess this is all pretty normal - I have heard of others in the babyloss community who are very anxious to become pregnant again immediately after the loss, and then a few months later, once the shock wears off and the real grief work begins, the initial desire turns into fear and reluctance.

I think the main issue here is that I am becoming increasingly ambivalent about exactly what it is that I want. I also feel increasingly tortured about both our losses and our infertility being unexplained and I am not sure exactly what is that I want from that either.

We could do a second round of more extensive testing - many of the autoimmune tests, for instance, but then as I have probably written about before, it is so unclear what to do with that information. If everything comes back negative I guess you get some peace of mind but you still have no answers. If one or two tests yield a positive result, I think there is oftentimes a temptation to attach too much importance to it as "The Answer."

And let's say we proceed with immune testing, for instance, and get some positive results, are we willing to try the therapies for it even though there are no good large-scale clinical studies or really evidence-based medicine to support it, especially considering the potential side effects and the cost? If we aren't willing to attempt immune treatment, there is probably no point in doing the tests.

The other unopened can of worms is doing a laparoscopy to rule in or rule out endometriosis. I do have some of the symptoms but my doctors in Israel felt that once we were doing IVF anyway, it didn't matter whether I do or don't have endo unless it is a major quality of life issue. Their reasoning was that they would recommend IVF in that case anyway and the added value of excisional surgery when doing IVF already is really unclear.

There is actually a series of two articles in this month's Fertility & Sterility about endometriosis and pregnancy outcome - basically saying that  women with endometriosis have greater risk of bleeding during pregnancy due to placentation and implantation issues, greater risk of inflammation to the membranes, and greater risk of pre-term labor and birth. Sound familiar? Of course I was struck with the fleeting (very hypothetical) thought that maybe endo could explain my seemingly unrelated fertility and pregnancy-related fiascos. With that said, the thought of very possibly unnecessary surgery makes me cringe in a major way.

I guess the options at this point are:
1) Set up a few consultation appointments here in TO and see what the docs recommend with an open mind
2) Same as #1 but go in with the intention of proceeding with a new IVF as opposed to doing further testing
3) Same as #1 but explicitly ask for certain additional testing (i.e. lap, immune testing, etc.)
4) Do nothing (though continue to try on our own, for what it is worth) and 'enjoy' my break until we return to Israel next summer and/or I return to Israel to do an embryo transfer.
5) See a counselor with Y and see whether we can get anywhere on the adoption issue (he is very much against it).
6) See a counselor so I can work on figuring out for myself what it is that I want...no other plans in the mean time.
7) Put starting a family on hold indefinitely and contemplate what being childfree would look like.

Jul 15, 2012

I'm back

That was quite the unintended lengthy hiatus. Moving across the ocean was a much bigger project that I foresaw. The good news is that after a few weeks at my inlaws we finally moved into our new apartment and we are now more or less settled (we FINALLY got internet set up on Friday). Y started his fellowship and I got my work visa and began work in the new lab.

I am doing okay but life isn't easy -- I still have many hard days, some incredibly hard days, and mostly a lot of in-between days. I wonder whether life would be a little more palatable with some pharmaceutical help, but truthfully, I am so distraught over the weight I haven't loss since giving birth that I am not sure I can handle adding antidepressant weight gain to the mix.

I never stop thinking about Aminadav and Naava. I imagine all the time what life would be like if they were here with us now and what they might look like and be like.

I get teary when I go through old pictures of Y or even myself from when we were both babies and toddlers. We were both really cute little kids -- I think both of us piqued in our looks around 3 or 4 :) I know the twins were really beautiful when they were born and I am sure they would just be so so cute now. Thinking about that never fails to make me cry.

And now here we in July, the month they were due. I suppose at some point the passage of time will make everything easier -- the memories gentler, the reality of life as it is less harsh, but for now I can't help but think time is strengthening the blow.

For some time after they were born but before they were actually due, the reality of our lives and theirs seemed somehow suspended in time, like we existed in some strange in-between where the twins were of course not here with us but they weren't yet supposed to be here with us.

I don't feel like that anymore -- I feel like our universe diverged into two roads, one the promising and happy path we were on and one the sharp and unexpected reality that came to be. I see all the new babies around now and think about how they were Naava and Aminadav's compatriots. How miraculous in some sense that they are here now -- so healthy and robust -- but I guess it is not so shocking after all, I mean isn't that what is supposed to happen? Supposed to happen for whom, though? Surely not for me.

I think that is what is so terrifying about moving forward with attempting to conceive -- the belief that I am somehow cursed, the belief that I am somehow different and every attempt at a live child will end in some permutation of something that is, well, not a live child.

To be fair this line of thinking is clearly not so illogical under my particular circumstances -- 6 IUIs, 5 IVF transfers, 3 pregnancies, 2 beautiful babies that my body wasn't able to support long enough, and 0 living children. It could be so much worse and I know I have many fellow comrades in the pity pool, but it is already an objectively abysmal set of statistics.

Y's grandparents met some woman with allegedly psychic powers who said I would never carry a pregnancy successfully unless I speak with her (she doesn't want money, she just needs to tell me a message). Despite their pleading, I can't bring myself to call her. I just can't. I guess to me it signifies 1) acquiescing that I am cursed 2) puts at least the illusion of personal control to change my situation back in my hands. The latter is a demon I have been working so, so hard to rid myself of -- the notion that any of this is in my control. If I say that yes, I do have control, the avalanche of self-blame that subscribing to this type of logic allows is limitless.

Also, just as a final update to my last saga, I thankfully ended up miscarrying naturally at 5w2d, bringing an uneventful end to my extremely short-lived pregnancy. I don't have any plans on the immediate horizon, but I do hope to set up a consultation at a clinic here in Toronto over the next few weeks. Realistically, it will take a couple of months to get in and then likely another couple months of repeating testing and making arrangements before I cycle again.

In the mean time, we are giving it a go the old-fashioned way…I have never had a naturally conceived pregnancy, but we have all of the right body parts, so I assume it is technically possible.

I would say that the loss of the twins is finally putting some strain on our relationship, not in a serious way, but it is something that wasn't there before that I feel now. Whenever I get really mopey and melancholy and ask Y whether he wishes things were different, he says of course, but he doesn't dwell on what was handed to us vs. what could have been the same way I do.

He even accidentally referred to the twins as "it" once a few weeks ago. He apologized and said he didn't mean it, but I couldn't look at him or speak to him for a little while after that.

When the babies came, we were truly one and together in a way I could never imagine beforehand nor articulate in a way that would do it justice now -- I am not big on soul-talk, but the best I can describe it is that our souls met somewhere above us and became one. It was a level of emotional intimacy that I had never experienced before nor will probably ever experience again.

Of course the flip side of such extreme intimacy is that it unsustainable and can pretty much only go in one direction after that. So I guess there is a bit of a rift now -- a sense that I still have so much intense sadness that can be overwhelming for Y. And whenever I feel bitterness I can't help but think it bad or dirty to feel that way, even though I know it is pretty normal. I know Y doesn't share the intensity of longing (not jealousy, I don't begrudge others for their good fortune) that I sometimes feel for what other people have.

The secondary issue is that I am feeling increasingly ready to accept adoption as a way of moving forward. This is in an abstract sense, because there are so many logistical issues that we would need to deal with. I would love to be pregnant again but having a child to love and to raise is more important to me than being pregnant again (of course with no guarantee that any pregnancy will result in a healthy living child).

Y doesn't feel even remotely similarly about adoption. Having a biological connection to the child is paramount to him -- he says he doesn't see what the point is if the child isn't his own. There is pretty much nothing to talk about there. There is no evidence to suggest that donor egg would be particularly helpful to us and while surrogacy may be helpful, with such a high price tag and in the absence of any super compelling reason why its our only option, that is off the table, too. In short, I think we will just continue to power on as we have before.

I just miss my sweet twins so so very much.