May 30, 2012

speechless



Please body, please G-d, please universe, please random chance: let this be good.


May 28, 2012

right where i am: 2 months and 3 weeks

This entry is for Angie's annual Right Where I Am project where she asks baby loss bloggers to describe where they are in their grief. Thanks, Angie, for both facilitating this project and the prompt -- I know it certainly helped me and took me to an unexpected place.

Today we are packing up our apartment in Jerusalem into boxes that will be put into storage for a year. In about 2 weeks, we will move to Toronto for Y to complete his fellowship. Y's parents are in town and they are helping us pack. Both of them (and Y) are much better at packing than I am. They are doing us a big favor by spending their vacation time in Israel helping us to pack, especially because I am so spatially challenged, easily distracted, and also inefficient.

Y's mom really wants me to acknowledge what a good job she is doing and how much she has helped us. But my stubborn 5-year-old version of myself is at war -- I will not thank her or acknowledge her help. Instead I will mope aimlessly in the corner. Both of my feet are planted firmly on the ground and I push hard against Y, against his parents who are helping to facilitate this move. Enablers. Co-conspirators.

I offer Y's mom a slice of leftover pizza, ask her if she'd like me to heat it up. She'll have it cold, she says. Like her son, she is ok with eating pizza cold. I marvel over how this is done, I tell her. Personally, I think cold, congealed pizza is disgusting. "I eat pizza cold because I am a mother," she tells me. Is this lady for real? Of course the only appropriate response is "Oh, well, mothers of dead babies like their pizza warm."

But instead I just bite my lip and stutter "I really don't think that has anything at all to do with being a mom." I hate myself for not saying what I want to say, but I'd hate myself for saying it, too. I hate myself for all that is left unsaid between us -- for the dirty feeling I get each time I realize that she doesn't consider my children real babies nor me a mother, not even a sort of in-between half-mother. One day I will tell her everything that she does not want to know.

I will tell her the truth, that these were her grandchildren, too. That Aminadav had Y's big head and that Naava was born alive. That they were not some sort of sad, macerated, bloody miscarriage mess. In fact, there was nothing sad about them except for their death. That these were real babies. Real, beautiful babies. Perfectly formed, just too small.

But for today I will not thank her for packing up my apartment and I do not budge. I do not want to budge. I don't kick or scream or make noise, I just give in to inertia and refuse to move. Actually, it is less of a refusal, more of a giving in. I am paralyzed, my feet planted firmly into the floor, through the floor, into the ground. Doesn't anyone understand? I have roots here.

Roots -- isn't that what I sought in this land, this scorching dry holy land that sucks you in until you belong to it more than it belongs to you? I came here, to Israel, as a new immigrant 6 years ago, seeking out the metaphorical roots. But now I belong to the land -- rooted.

These are the strongest, most real roots; so solid I could not extricate myself from them with any amount of effort or denial. Because here comes the simple truth: my babies are in the ground here. They are part of it and belong to it and I am part of them and so we all belong to this land.

Leaving this place, packing these boxes with our books and pots and pans, is leaving my children behind. So on this day, 2 months and 3 weeks since Aminadav and Naava came and went and returned to the land, my land, I hope you can understand why I can't interrupt my moping to thank anyone for enabling me to leave this place.

When they were gone it was so easy to go back to the life we had before. Except for their absence everything about our lives was identical -- a perfect replica of everything we had left behind. I went back to the lab, to a life of pipetting and aliquoting and enumerating. Y went back to the operating room, to the familiar routines of cutting and splicing and suturing back up. We both found a lot of comfort in the oldness and predictability of our lives from before. I returned to work full-time within a week of their deaths.

But here's the thing: I never imagined the future without the twins. I never imagined Toronto without the twins. While it was easy to slip back into the past without the twins, when it comes to the future I am still stuck on the future of my parallel universe -- our future with arms more than full. In the last few weeks, I have been preoccupied by the thought of how if they were to come now they would most likely be here safe and healthy.

I still wonder what it is like to have arms that are more than full.

Until now, until our living room was filled with bubble wrap and packing tape and IV boxes full of kitchen utensils I conveniently blocked out the part when everything changes and the twins aren't here, the moment when the future arrives and the twins aren't coming with us. This is right where I am: 2 months and 3 weeks later.

May 23, 2012

the embryo transfer blues

Despite my best attempts at apathy, TTC again is really hard. I so desperately want to be pregnant again, but everything I've been doing to try to make it happen feels like a form of punishment. I think constantly about how if the twins were to arrive now they would most likely be alive and well, and that causes me a lot of pain.

Every action we take to make a new baby is a reminder of the babies who were supposed to be here with us right now. Sometimes it is just too cruel. I do still think this was the right choice for us -- to jump back into IVF again so soon after, but it is hard and lonely.

Today we transferred one day 3 8-celled embryo with some fragmentation. I really only want to do SET because I am terrified of conceiving another set of twins, but I still have very complicated feelings about it. In some sense "needing" to do SET and the lowered chance of pregnancy with each transfer that comes with it feels like a punishment, like I am being reprimanded for something really horrible that I did.

And in a sense that's completely accurate -- I am being reprimanded for something really horrible that I did, it is just something that my body did that I had no conscious control over.

Honestly, part of me also would still really like twins. I am okay now with admitting that, but at the same time it is a very theoretical type of want, because another twin pregnancy, at least before proving that I can successfully carry a full-term singleton pregnancy, would just be too terrifying and too unfair to the babies (so despite my complicated feelings, no need to lecture me on what a bad idea it would be to transfer more than one embryo).

Anyhow, all of this talk of singletons vs. multiples is pretty moot at this point. Due to the premature rise in progesterone, Dr. T. thinks my chances of conceiving with this transfer are low. Of course this makes me feel pretty bleak. Actually, this really sucks.

I have been giving this little 8-celled soap bubble a lot of pep-talking, and of course anything at this point is possible -- if I have been on the wrong side of the unlikely statistics more than my fair share, isn't it possible to end up on the right side of the unlikely statistics this time?

I even promised this pretty little 8-celled soap bubble a ridiculously overpriced stroller and a loving home (you will not be surprised to know Y rolled his eyes at the ridiculously overpriced stroller part). Still, I am not very hopeful and it's bringing me to a sadder place than I imagined because I am bringing so much additional grief along with me.

The interesting news is that we still have four remaining embryos. This morning, one was 4 cells and the other three were 6 cells. All of them had some fragmentation. This doesn't sound stellar, but Naava and Aminadav both came from blasts that were fragmented 6-cell embryos on day 3.

Our lab isn't so good at freezing and thawing blasts (though they do use vitrification), so the current plan is to freeze the remaining embryos today on day 3 and then thaw them next month and attempt to see if we can grow one of them to blastocyst. Then we would attempt a day 5 SET, which is what we initially wanted to do with this transfer and we would have, but since my RE thinks our chances of implantation are lower due to the premature progesterone rise, we didn't want to…wait for it…put all of our eggs in one basket.

This plan is ok but puts a serious cramp in my style given that we were supposed to move to Canada on June 15! If this transfer is unsuccessful, the new plan is for me to stay behind in Israel solo to do the transfer after we've packed up all our stuff and moved out of our place. This would pretty much suck (goes right back to the feeling of being punished), but since I am a glutton both for punishment and opportunities to get pregnant, we all know that I will end up doing it. Clearly, what would suck even more is if I hang around for the additional couple of weeks only for none of the embryos to make it to day 5.

Between the move, TTC, and my work situation I feel like everything is in total limbo right now and nothing about this year is unraveling the way I hoped and anticipated (most notably the part where my twins were supposed to live and I was supposed to be totally overwhelmed with two infants this summer). Sorry if I am starting to sound angry, sad, and bitter, but right now, I think that's pretty much where I'm at.

May 21, 2012

cycle update

10 eggs retrieved (much better than we expected), 7 eggs mature (a little better than we expected), 5 fertilized by ICSI (we'll take it). Big decisions to be made still re: transfer and lots of different considerations to take into account (though we are pretty steadfastly committed to SET, so that is not one of the major considerations). I am exhausted so more to come later, but I just wanted to check in.

May 18, 2012

in which my body made the choice for me...

This round of IVF has become somewhat of a disaster. My right ovary is on vacation, not responding at all. The ultrasound technician says there is something on that ovary, probably a cyst. My E2 was very low at baseline so whatever it is, it seemed unlikely to be functional and interfere with things, but it is now the only explanation of why my right ovary won't do anything. I am now on 2x my usual dose of stims trying to max out what the left side can produce.

None of that in of itself is so terrible, but yesterday my progesterone more than doubled. In short, this means the environment is no longer supportive of implantation, so the plan is to cut the cycle short, do retrieval on Sunday, and then likely freeze whatever we can get in terms of embryos. If we get 3-6 eggs, I don't think we will have much in the way of embryos, but things don't look good for a fresh transfer this month.

The other problem is my uterus. When I had my follow-up scan after the operative hysteroscopy, there was still a small amount of residual "stuff." The gynecologist wanted to wait until I had a good bleed and do another scan at the beginning of my cycle herself to see how things look and then send me for another diagnostic hysteroscopy if things still didn't look good. Then I got the crazy idea that I wanted to do another IVF before we leave for Y's fellowship. And I got lazy. If I needed to get a baseline scan at the fertility clinic anyway at the start of my cycle, I didn't want to also trudge back to her for a baseline scan as well. She said that was up to me, I should just let her know how everything goes.

The baseline scan at the fertility clinic wasn't perfect, but it was good enough for them and I explained to the ultrasound technician the context, so she knew what she was looking for. She said my lining was very thick for the beginning of the cycle and that there was a small echogenic area which could be something or nothing, but at any rate, it was probably on its way out with my period. My next two scans were both with different technicians and they both said my uterus now looked fine. Cue major sigh of relief.

Yesterday was yet another technician. She said there was a small amount of fluid in the uterus (never a good thing) and that there is still an echogenic area with blood flow (not good at all). Also, my lining is inexplicably getting thinner instead of thicker. I don't even know how that is possible. Now my RE says he will take a look at the uterus as well when he does my ER but a fresh transfer is likely off the table anyway due to the rising progesterone.

I guess my body decided for me that it is not ready to make and carry another baby yet. I am quite sad and frustrated because I don't know when our next opportunity will be to cycle again since we are leaving for a year. I know it was wishful thinking to have a smooth and successful IVF so soon after losing the twins and I know I have been a lot less emotionally involved in this cycle than I usually am, but honestly, I am still not at peace with this and it makes me so sad. I come back to it every time - I will never understand why this has to be so so hard.

May 14, 2012

i have a secret

I have a secret. I am currently in the middle of an IVF cycle. (Wow it feels good to say it.) A little slip-under-the-radar IVF before our one-year sojourn in Toronto for Y's fellowship and the end of our amazing Israeli fertility coverage until we return in summer 2013. We aren't telling our families or anyone, really (except for the internet, apparently) about this cycle. It feels quite liberating, in fact - this covert IVF business. It suits me and I think we should keep our reproductive pursuits under wraps more often, as far as family is concerned. Or at least be much more vague.

In the off-chance that all the stars align and I win the reproductive lottery, both by becoming pregnant and then remaining pregnant long enough that the baby is viable before my body sabotages the pregnancy, it would be my ultimate fantasy to tell no one at all of the pregnancy; rather, I would just show up one day with a robust, squeaking, living baby safe in my arms.

Everything about this IVF is actually pretty liberating. It is so vastly different from my previous cycles in that I really don't care. I know I will be truly, honestly sad and disappointed if it doesn't work, but in the past I was really short-sighted, and that made the consequences of a failed cycle seem much worse. What I mean by that is that it felt really high-stakes when I viewed the worst possible outcome as either a failed cycle or an early miscarriage. Now my deepest fears lie elsewhere.

In the past, I was obsessed with having complete control and doing everything just right - the IVF meditation CDs, acupuncture, reciting tehillim (psalms), eating well, nutrition supplements, knowing the size of my follicles and E2 off by heart at any given moment, actually handling dangerous chemicals in lab with caution. I believed that no one was more invested in the outcome of my cycle than myself so the weight was on my shoulders to do everything in my control to get everything just right.

My control freakery has at least temporarily been replaced largely by indifference. It is too early to say whether my newfound zen is the real deal or just a temporary manifestation of apathy that is part of my mourning. For now, I am just injecting whatever medications in whatever quantities my doctor recommends and trying not to think about it much beyond that.

The decision to cycle this month was actually extremely impulsive and last minute - as in, we had a vague and general conversation with Dr. T. about cycling again before the retained placenta disaster and then I woke up bleeding one morning last week, shocked myself, and asked Dr. T. whether he would support me in doing something really nuts and allow me to cycle right now. The next morning I went in for a baseline and got my prescriptions and that evening I started my injections.

I knew Y was secretly delighted when I called him at work to say I had my period and was thinking of calling Dr. T, though he had done a really good job not explicitly pressuring me to cycle when I didn't feel ready, which I really appreciate.

I also know it is a little radical what I did - leaping off a cliff with my eyes closed and deciding to cycle last-minute when I had already started bleeding - but for me, it is what worked. I was really incapable of knowing I was ready until that moment arrived, and if I had a lot of time to think about it, it would have just made me very anxious and agitated.

I also have the unusual luxury of an extremely accommodating and understanding RE who could make things work on very short notice. (I suspect he is also happy to have the opportunity to try to get me pregnant again before we leave for Toronto because I know our loss was the loss of a victory for him, too, and he is a really swell guy who certainly makes me feel like he has an investment in our outcome.)

Since losing Aminadav and Naava, I have had many days when I feel like never trying to get pregnant again, but underneath those doubts and dark feelings, is my belief that while nothing will ever fix what happened or my incredibly strong desire for them specifically, Y and I need a happier focus to our lives in the form of a living child.

I did think maybe it was a little bit overly eager to be returning to IVF and attempting to get pregnant again so soon after the twins died. I think that sometimes, still - that it is somehow disrespectful towards them to move forward with cycling so quickly. But mostly I see that a living child will connect me back to the twins - that the love I have for a living child and the mothering I have the opportunity to do for him or her will also allow me to mother the twins in the way I never got to and allow my love & appreciation for them to deepen even more.

It is incredibly scary and unnerving, as always, never knowing exactly what still lies ahead in our pursuit of a living child - the same, familiar wondering as before - whether we are very far or closer than we think. Except this time, it is tinged with the awful first-hand knowledge that you can get very very close and come back up with empty arms, having lost and gained so much. (It is always important to remember & acknowledge how much we gained.)

May 13, 2012

the grinch who stole mother's day

My dad sent me an email to let me know that my mom was upset that I hadn't done anything to acknowledge Mother's Day this year. He just wanted to remind me what day it is since we live abroad. Of course I know what day it is, but am I a selfish cow if I want a free pass to explicitly not acknowledge Mother's Day this year?

I am not usually so petty (or actually, petty at all), but I responded with something really vile. The good thing is that I know he won't share it with her and writing something so horrible and petty was actually quite therapeutic. I responded that if she was really upset about it, he could let her know that my children didn't send cards, either.

*While that felt therapeutic of course in the end I had to wish my mom a Happy Mother's Day.

May 10, 2012

grief comes in zig-zags

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

They say this is the order of the 5 stages of grief. My grief is non-linear. There is not really chronology or order to it. I skate around in my grief in crazy zig-zags and dizzying loops. Mostly, I have done a lot of denying. More hours than not my pregnancy with Aminadav and Naava and everything that immediately followed it feels like a strange dream. In fact, most of the time they feel like a strange dream; maybe some souls I knew in a past life. So familiar but so ephemeral. Most of the time on some deeper fundamental level I do not believe that any of it really happened; it feels like a very sad story someone else told me about myself.

These hours are inevitably followed by the harder moments when I cannot fathom how they are not still here with me, either inside of me or inside an incubator that is much safer than inside of me. But mostly, I have done a lot of denying, and then I can manage with reality in little bits and in a measured dose.

They say bargaining is Stage 3, but I did a lot of bargaining very early on. I am an expert bargainer. I bargained all throughout my fertility treatments and through my first and second pregnancies. Sometimes I bargained with G-d, sometimes with myself, and even more often, with no one or nothing in particular. When Aminadav and Naava died, I was already a pro. The bargaining came immediately and naturally.

I have done a lot of what Joan Didion would refer to as magical thinking in her The Year of Magical Thinking. The magical thinking has all been part of my bargaining hobby and oftentimes has been quite elaborate to the point that one might think it takes a great deal of imagination. I find the magical thinking exhausting but not so much a creative pursuit. As I said, I am very good at it. I am trying to cut myself off from it.

My first few weeks back at work, I spent more of my day surreptitiously conducting PubMed searches on every possible word and phrase variation of "pPROM" "placental abruption" "twins" and "subchorionic hemorrhage" than I actually spent performing lab work. I remained steadfastly convinced (and honestly, still often do) that if I could find some way to retrospectively fix or solve what happened, especially to Naava, whose amniotic sac was still intact and who was born alive, that I could actually change the outcome.

Oftentimes, I have even been convinced that just finding clinical studies with better overall outcomes than the gloomy statistics reported by my doctors would change the outcome. "See! But they live!" I would exclaim triumphantly, well after the fact of their deaths. I recognize that this is spectacularly delusional, but I still can't help it.

Stage 2, anger, reared her head later on than denial, bargaining, or depression. I was really angry with myself and I still am. It is easy for other people to tell me to be gentle with myself, to be kind, but much more difficult to internalize it in a way that is genuine, because I really do honestly hate myself for what happened. The self-loathing is a narcissistic pursuit; I was unable to indulge in it until I could go longer than a minute without thinking of my poor babies and their horrible fate & bring the focus back to myself.

Even more recently, my anger has developed a new prong, and it is a sharp one. Now I am angry at other people. At the beginning of the week, we saw a doctor who specializes in miscarriage and pregnancy loss. I still haven't done any loss-related tests; specifically, I was hoping to do some sort of clotting and autoimmune panel, especially to rule out thrombophilias since they are often associated with placental issues. This doctor became the new subject of my wrath when he sent me on my way with no new ideas or additional information beyond a lab slip to test for various infections. I will never get back the 120 seconds of my life I spent peeing in a cup for chlamydia and I am very angry.

I guess the only flavor of the 5 stages I have yet to experience is acceptance. Maybe I have even experienced a little of that too, in small doses during those rare moments when I can imagine my life having a happier focus one day. Not that there won't always be an empty space where Aminadav and Naava were but that I will learn how to be happy and appreciative without ever being whole; that I will learn how to live with this empty space, not in spite of it or around it but simply with it. For now that seems like a pretty tall order. One day.

May 2, 2012

Hazy funnel cloud

That was the description of today's forecast in Jerusalem when I checked it a few minutes ago. I am not sure if "hazy funnel cloud" is a proper meteorological term, but I do think it is a pretty accurate description of where I am at right now, so I like it.

May 1, 2012

our trip





The world is so beautiful, but it is also an empty place. Everywhere I go, I wonder what it would be like if Aminadav and Naava were there with us. Being outside, the midday sun blinding my eyes- it is all really nice, but of course mostly I wish that I was still on bed rest, watching the days lengthen and the seasons change from a hospital bed.