Dec 16, 2012

week 10 update

Today I am 10 weeks + 2. I am beginning to gain a little more confidence in this pregnancy, or at least feel a little more positive about our chances of making it through the 1st trimester, but I still worry constantly that everything could change in a second, maybe without me even knowing it.

I know I have written about it many times before, actually in a way that was eerily foreshadowing when I was pregnant with the twins, but I hate how when things go wrong you feel like such a sucker - like how could I have even thought that everything would turn out ok or how was I was oblivious to my fate.

Yet when things go well, you tend to feel just a little smug or you even berate yourself for having so much unfounded anxiety when everything is just dandy. And as I have also written before, of course the only thing separating Mrs. Sucker from Mrs. Smug is, well, the outcome of the pregnancy, but it's really something you have zero control over and sometimes while all available data points to yes, the outcome is still a no.

In the past week, we unearthed the doppler and I've been able to listen to the babe's heartbeat, so that has definitely been reassuring. Morning sickness has steadily gotten worse, which makes sense because it peaked pretty late with the twins, too. So far I have needed IV rehydration twice which is pretty unpleasant, but the intense vomiting (fun!), still hasn't been as frequent as with the twins. I am now taking diclectin a few times a day, which is a combo of vitamin B6 and antihistamine and that does seem to help, though it makes me really drowsy.

I also started packing up clothes that are clearly too tight and I've now taken out my maternity clothes. This feels like a leap of faith that I am just not totally comfortable with, but I am beginning to grow (mostly just bloat, I think) and it is pretty impractical to have all of these clearly too-tight clothes taking up space. I am more comfortable in mat jeans now than my regular jeans, but I don't plan on putting on any maternity shirts until the start of the new year, which will correspond to the beginning of 2nd tri, if I make it that far. I feel like maternity shirts make it really obvious, so in the mean time I prefer sticking to big sweaters.

I am weaning off of progesterone now, though the plan is to continue Prednisone until 12 weeks and then slowly taper between weeks 12-20. Even though I am on a low dose, I am definitely beginning to feel the side effects of 2 months of Prednisone but I can't complain.

I still have so much unresolved grief for Naava and Aminadav, which isn't at all surprising, but this new pregnancy definitely sometimes intensifies my grief. I just wish so so badly I had the chance to really get to know them and raise them. It is all so confusing - I know I wouldn't have THIS little one on the way if they had survived and I feel much more of an attachment to them than I do to this baby (I feel horrible just writing that) and I suppose all of that makes sense because I carried them for much longer and delivered two very real to me little people, whereas at 10 weeks this pregnancy is still obviously much more abstract.

Sometimes it definitely makes me feel guilty, like I am not 100% there for this little one. But I know that should this pregnancy G-d willing continue, my love for this baby will grow and grow, even if it might take me longer to become attached due to my past experiences and my ongoing grief. And little baby, I can't wait to get to know you and learn who YOU are.

 I think that is all the news fit to print in our corner...pretty boring, I think, but for now boring is good!


Dec 4, 2012

an eventful & stressful week

Sorry for the lack of updating. I still have a hard time writing about pregnancy. I apologize that this will likely get long since I am so far behind. It is always good to type things out, though - I hope that my experiences will be helpful to others and I also like having a written record for myself, too.

The past few days have been incredibly stressful. To rewind a bit, last Thursday I went in for my second scan. In typical fashion, I spent most of the day before day dreaming about a negative result…you know the positive visualizations they teach you to do in fertility mind/body meditations? I tend to take the skills learned there and adapt them for the bad. Anyone else do that?

Instead of visualizing my body doing something great (lots of follicles for IVF, many embryos fertilizing in their dishes, a strong embryo implanting), I visualize the worst in all of its sad, morbid detail and somehow I think this is some sort of amulet against it actually happening.

Or perhaps more accurately, I feel like if I visualize it first, I am easing myself into the possibility of bad news, adjusting my expectations so if something isn't right, I am not shocked, or so I don't feel like the 'fool' again.

There is some famous quote you often see on miscarriage forums about how if you worry about something bad or imagine it in your head and then it does happen, then you've had to live through it twice instead of once (and if it doesn't happen, you've unnecessarily subjected yourself to anxiety and fear). I guess I take the opposite approach -- I believe it is easier to experience the reality of bad news if you are already half-expecting it and have already walked around in it a bit.

Anyhow, enough about neuroses for now! The scan actually went really well. I was measuring 8w0d -- still a day ahead -- and we got a nice strong heartbeat of 167 bpm. Also, we are at the gummy bear stage -- little limb buds beginning to form and I saw the spine, too.

So I left last Thursday's appointment feeling pretty good about things. On Saturday afternoon I got a headache, which over the course of a few hours turned into a bad headache with very severe vomiting. Over the course of about 6 hours, I vomited 15-16 times. I could just not get a grip on the vomiting and I was really miserable. Y brought home IV fluids and Zofran and managed to rehydrate me at home.

Sunday I was still feeling under the weather but had some things planned and yesterday I was really dragging my feet at work -- just didn't feel like myself. Around 3pm I started to get very intense contraction-like pains. After two waves hit (with about 10 minutes in between) I realized it wasn't going away and I left work as quickly as possible, highly suspicious that the contraction-like pain was the early stages of miscarriage. Bleeding all over the place at work is basically one of my worst nightmares, so I high-tailed it out of there.

Managed to make it home and to the couch. The pain was intensifying. In between waves, I was merely uncomfortable, but the contraction-like pains themselves felt EXACTLY like how I felt when I received Cytotec to complete my 1st miscarriage. Y came home and squeezed my hand and we were both so upset. After a couple hours of this with no blood in sight, Y suggested that we head to the ER to see if we could get some idea of what was going on.

We went to the hospital in the city that specializes most in pregnancy issues and has 24/7 ultrasound facilities. The ER was a horrible experience. We waited just over 5 hours to be seen. In the mean time, the contraction-like pain slowed to 15 minute intervals and then 20 and then eventually stopped, thank G-d.

They wouldn't allow me to drink a cup of water over those 5 hours which in retrospect makes me livid (they weren't giving me IV fluids, either). I assume the reasoning is that they don't allow patients complaining of abdominal pain food or water in case they have a surgical abdomen, but after waiting over 5 hours to see a doc, you can be pretty damn sure no one REALLY thought I had a surgical abdomen.

Anyhow, we finally see the doc who doesn't examine me but brings in a portable ultrasound. He says he sees a flicker and suggests I come back in the morning for a full ultrasound and sends me on my way. He also says my labs look fine.

Today I saw the lab results from last night and my ketones were +3, so I don't think there was any doubt that I was at leastly mildly dehydrated. I now suspect that I never fully recovered from my dehydration on Saturday and that I was walking around trying to do too much while dehydrated -- hence setting of the contractions. What is maddening is the three other women being seen for early pregnancy issues who were sitting in the same waiting area all had IV drips and they wouldn't let me have a sip of water or give me fluids! So basically I went to the ER to become more dehydrated than I already was against my will.

I also don't think it would take Dr. House to look over my lab results and my complaints and think "Oh severe dehydration 48 hours ago + current severe cramping + currently throwing ketones - must be dehydrated!" But since I didn't have access to my lab results while we were in the ER, I never got the opportunity to put 2 and 2 together.

This morning's ultrasound was good, thank G-d. I am still really shaken, though - that level of pain was really unnerving and definitely not normal. They sent me to a nurse to get the results. She had a prepared speech that the risk of miscarriage at this point is 50/50. Even I the eternal pessimist call bullshit on that.

Maybe the risk of miscarriage is 50/50 around the time of implantation, but after seeing a good heartbeat and good progression over the course of 3 ultrasounds (now 8.5 wks), I am quite sure the risk of miscarriage is well below 50%.

I asked her whether the chance of a miscarriage might be lower based on seeing a good heartbeat on multiple occasions in hopes that she would revise the 50/50 statement and she said "Yes -- definitely -- once you see a heartbeat at the NT scan and then at the anatomy scan at 18-20 weeks, the chance of miscarriage is much less."

She then went on to describe if the baby is healthy and no anatomical problems are found at the anatomy scan, you are almost home free. If she is an OB/gyn nurse, I would hope that she knows that most late pregnancy loss is due to maternal factors. I thought it was super ironic that she was telling me that a good anatomy scan means you are almost home free less than a minute after I told her I had a partial abruption followed by PPROM at 19 weeks, while she was reviewing my history. The whole experience just made me upset.

Right now I am feeling incredibly grateful to still be pregnant but really down-trodden over the events of the past few days. This is the hospital that deals most with high-risk pregnancy and the place where I will be receiving my care and frankly, so far I have found the level of care appalling compared to Israel and I have very little confidence in them, which is a really sucky feeling.




Nov 21, 2012

our little squiggly & welcome iclw

Today we went in for our first ultrasound - a day earlier than planned due to some pretty bad cramping I've been having. I have been really terrified the past few days, so I was really happy to get it over with. Thankfully, the news is good.

We have one beautiful squiggly measuring a day ahead (6w6d) with a heart rate of 139bpm. I am happy. I am feeling more hopeful than I have in a very long time. I was terrified that we would see an empty sac, but I was also really scared we'd see more than one baby. Twins are so special and wonderful, but after losing Aminadav and Naava, a twin pregnancy is too risky for us. With a singleton, I hope I will have a good shot of carrying close to term. Of course we have a LONG way to go before we are back to the prematurity/PTL concerns.

I will do another ultrasound next Thursday and then we will take it from there. This was my first pregnancy-related ultrasound in Canada and it was weird to me that they didn't allow Y into the room, didn't let me see the screen, and would only give me results via my doctor. It felt really paternalistic to be honest. However, they did give me a nice picture of Squiggly. It feels so strange to say that I am feeling happy and peaceful, but it's true!



For those just joining us through ICLW, welcome! For a brief recap, we recently learned that we are rather unexpectedly though wonderfully pregnant after a long-shot Clomid/Prednisone cycle while waiting to start a new IVF. We started fertility treatments in August 2010 and since then we've done 6 IUIs and 5 IVF transfers (3 fresh, 2 frozen).

We've had many failed treatment cycles and several losses - two early miscarriages and the loss of our beautiful twins, Aminadav and Naava, who were born catastrophically early last March due to PPROM/PTL.

This blog has been an infertility blog turned pregnancy after infertility blog turned infertility blog many times over. Through the past few years, I've written quite a bit about unexplained infertility, the IVF process, miscarriage, high-risk pregnancy, and baby loss. The posts that are most meaningful to me are those about Aminadav and Naava, my lost hopes and dreams for them, and my grief.

Whatever brings you to our community, I am so sorry for your struggles. This is a sucky club to be a part of, but thankfully for us it is populated by many courageous, funny, resilient, and bright women.

Nov 17, 2012

quiet

I know I have slipped back into my cocoon the last week or so. There is not so much to say about my pregnancy. It is basically a black box until our first ultrasound on Thursday (7 weeks).

The days are passing very slowly and I constantly worry that my symptoms are too mild. But I suppose it boils down to something pretty simple -- either there will be a heartbeat(s) on Thursday or there won't be.

It is a little haunting how this pregnancy came almost exactly a year after my pregnancy with the twins. The two due dates are just 15 days apart. I can't help but be transformed back to last November -- every little detail of where we were, of how my pregnancy with the twins began to unfold.  But it is strangely comforting, too. I feel Naava and Aminadav's presence more strongly now. It is a sweet, bright presence that brings me nostalgia and warmth.


Israel has obviously been weighing heavily on my mind. Seeing on the news what it going on back home and not being there -- it is all very strange. Also, now living outside of Israel and seeing the way (some) of the outside world views the conflict is truly distressing and frightening to me. Those who question the right of Israel to exist and defend herself disturb me greatly.

Here's to a quieter, calmer week for everyone.


Nov 8, 2012

beta #4 and RPL appointment

Yesterday beta #4 (20dpo) was 2341, up from 955 two days before (I think I originally wrote that it was 956...I was off by the last digit!). I was pretty relieved and quite pleased with that. My progesterone took a nosedive though, which is weird. I think my dose probably needs to be upped a bit. Of course it makes me nervous...just like everything else.

I have another beta draw tomorrow (#5). Hopefully this will be my last. I find the betas really nerve-wracking, so I would be very happy to be done with them, but the RPL doc wants two to compare that were drawn at his clinic since there can be inconsistencies between clinics.

Speaking of which, we had our appointment yesterday afternoon with the RPL specialist. It was originally set up as an IVF consult, so I am quite grateful that he was still willing to see us in the context of this rather surprising pregnancy. I did all the first tri bloodwork as well as screening for a bunch of antiphospholipid antibodies.

Truthfully, I didn't look too carefully at the requisition sheets so I am not exactly sure of everything we did (very unlike me) but it amounted to 15 vials of blood. Apparently, false negatives for antiphospholipid antibodies are common during pregnancy, but a positive result could change our current management, which is why we still did the tests.

In the mean time, I am continuing on with the progesterone and Prednisone (until 12 weeks) and starting low-dose aspirin. I know I spoke to several doctors in Israel who don't believe that baby aspirin does anything, but this doctor felt pretty strongly about it, and I don't think it can hurt...hopefully it will help. He will continue to follow the pregnancy and then if I am lucky enough to make it past first tri, I will be referred to the high-risk clinic.

Overall, I feel like we have our bases covered and I am so relieved my beta didn't drop but we have a long way to go, baby - just 5 weeks today.

Nov 6, 2012

beta anxiety (second edition)

Last night Y got a script from his dad for a beta, if I wanted to repeat it today instead of waiting. I toyed with idea - I figured if this pregnancy is truly on its way out right now (a possibility), it would be reflected in a beta that is the same as yesterday or falling. But an equally likely possibility, perhaps even more likely, is that the number would be up, maybe another slow rise, and repeating it within 24 hours instead of the traditional 48 would just make it unequivocal and hard to interpret. The final possibility, that my hcg is playing nice again, is also definitely possible, but just having the 24h result, I'd still be nervous.

So...I decided I would POAS this morning and if the FRER was clearly getting lighter, I would go in for another draw this morning to confirm a fall, if it looked the same or even darker, I would wait 48h for the next draw....very scientific, I know :)

I had a really weird dream that I was getting some work done in an empty classroom, which apparently involved spreading my possessions about, including a massive collection of saved FRERs from this pregnancy. In the dream, I proceeded to pack up most of my stuff, forgetting the FRERs, and realizing only too late that a class had begun and a bunch of kids were now in the room...WEIRD.

In my second dream, this morning's FRER shattered before I could really interpret the result. And for what it's worth, in reality, today's FRER looked the same as the one from 2 days ago, but since the pregnancy line is so much darker than the control line, it is hard to interpret beyond safely saying that my beta is not likely plummeting.

So now I get back on the waiting train. I know I was a bit dramatic last night....but I was really so sad and disappointed. I know I have a tendency to jump right to the post-mortem before disaster has been confirmed (or sometimes even, denied).

What doesn't help this tendency to jump to the worst conclusion whenever anything is less than perfect is my history. It seems that anytime anything is slightly less than stellar for me pregnancy-wise, it inevitably leads to a succession of events that culminates in something bad.

The truth is, I am barely coping with my fear and anxiety when everything is going perfectly, so when stuff goes less than perfectly, it really throws me a curve ball. For now, I am just trying to get through the day.

I know that betas that stop doubling nicely can be ominous and unfortunately, the first sign of a pregnancy that isn't doing well can be jittery betas, even if it's only weeks later that the pregnancy actually fails.

Two rather innocuous possibilities for the slower rise:
1) There were two embryos and now there's one....a vanishing twin. My betas have been higher than average, even for a twin pregnancy, according to betabase, though I know there is no hard science to predicting multiples based on betas...high betas can also of course correspond to a singleton who implanted on the earlier side. If there was in fact a vanishing twin, my betas should recover with the next draw.

2) Y suggested that perhaps I was a bit dehydrated for beta #2, artificially raising the result. If you consider only the first and third beta values, the overall doubling time is still within 48 hours.

I am so anxious about the future, but like with everything else, unfortunately only time will tell.




Nov 5, 2012

beta blues

I wish those magical two pink lines didn't make my heart sing with glee every time I see them. I wish those magical two pink lines didn't tempt me to fantasize about my dream life, the life I took for granted that would be mine for so many years every time I see them.

Every time so far that I've seen those magical two pink lines, I've been duped, and yet, every time I seem them again, I am filled with renewed hope and anxiety and fear and forboding, yes, but also so much joy too.

Why? Why can't I view those magical two pink lines of a pregnancy test with the same detachment I view the two very unassuming lines on an ovulation predictor stick? Why can't I just learn my lesson? In my world, those magical two pink lines -- they pretty much mean...nothing. But I seem to be very late to the game in accepting this on an emotional level.

The doubling time between betas 1 and 2 was 33 hours -- from 146 at 13dpo to 391 at 15dpo. Those were some pretty strong betas. However, beta 3 at 18dpo was 956, a slowing to a 56 hour doubling time. Coupled with the awful headache and lower back cramps I've had today, I can't help but worry that this pregnancy has begun to fail.

Also, this is ridiculously subjective, I know, but I POAS yesterday morning and the pregnancy line was soooo much darker than the control (it stole most of the dye from the control line), I really think that it would have corresponded to a beta of at least 1000 and that things just took a downturn in the past 24 hours.

I know a beta can take 72 hours to double and it can still be okay. I know the 48 hour doubling time rule is a little arbitrary and that there is a whole spectrum, but I have never had betas not double in 48 hours and had it been okay. Also, these cramps are for real. So, I think I might be pretty close to bidding pregnancy #4 goodbye. I only hope that if it's not meant to be, it won't be a protracted ordeal with unequivocal betas and ultrasounds and that it will end quickly.

I am sad tonight. I really believe in my heart every time that this is the time that will be different, but sometimes to continue trying just feels like punishment. I also believe in my heart that this is a problem with my body and not our embryos.

Nov 4, 2012

that other 2ww - TO2WW

The 2ww (or more) between a +hpt and an ultrasound to confirm the heartbeat(s), now fondly dubbed 'TO2WW': biggest mindf*ck ever. Of course its redeeming quality is that it is for a great cause, because until proven otherwise, you are pregnant. Its undoing  is that the stakes have been upped over the previous 2ww yet the potential for disaster is still quite high.

 After the two pink lines is both the best and worst place that an infertile can be.

Here is a (maybe not so) brief history of the reason why TO2WW makes me nutty:

October 2010 - pregnancy 1 (IUI 2):
Looks like a late implanter, but in Israel all of the drugstore hpts are pretty crappy, so….the most expensive stick I could find, the "Yes or No Professional" test, doesn't yield a faint positive until 14 dpIUI. And the underwhelming 1st beta …
14 dpIUI: 42
18 dpIUI: 279
25 dpIUI: 3576

Guiding initial thoughts of pregnancy 1: Betas start off low but the numbers (more than) double nicely. It is my first pregnancy and I am pretty anxious but I haven't yet actually had a loss so oblivion is still (sort of) my friend at this point. An ultrasound at 5w2d reveals just a GS - but again, I am too naive to think disaster at every turn. I still have some trust in the process and in my body. Brown spotting for a few days during week 6. Ultrasound at 7w3d - no heartbeat - missed m/c. Game over pregnancy #1.

new neuroses developed: Late implantation is an ominous sign of bad things to come. Brown spotting means the baby has died.

November 2011 - pregnancy 2 (IVF #2):
Guiding initial thoughts of pregnancy 2: I am a smart girl and stockpiled FRERs during my trip to the states so pesky subpar hpts won't keep me from a successful pregnancy test this time around (since that was clearly the problem last time). First +hpt 6dp5dt - see these pee sticks are worth their weight in gold! Initial thought: Not a late implanter this time, an auspicious start, in my mind timely implantation = successful pregnancy.
beta 1 (11dp5dt): 308
beta 2 (13dp5dt): 849

Guiding thoughts con't: Well this is definitely different from last time, so hopefully it is going to work out. Wait, no, not enough symptoms…they come, they go away. This shit is crazy. Night before 1st
u/s (6w2d) -  I'm not even tired anymore, another missed miscarriage, I think.  Arrive to clinic for ultrasound dejected - we both expect bad news (I have also convinced Y without doubt that the pregnancy is doomed because, well, I am not tired anymore, I am not nauseated, etc.). Ultrasound #1 - 2 heartbeats!

Week 9 - start bleeding bright red. Previous experience dictates that blood = dead babies. Shocked and relieved to find out that bleeding is 'only' from a SCH - the same SCH that rears its ugly head again at week 16 and leads to the succession of events that ultimately result in the death of both my beautiful babies, but I don't know that yet.

Week 19-20 - Aminadav's water breaks - PPROM. I lose both my little loves to PPROM/PTL.

new neuroses developed: It's never too late in pregnancy for your bab(ies) to die, either inside of you, or by arriving a few weeks short of viability (or as it also often happens, after…). Bleeding is a harbinger of disaster. If you PPROM before viability, you are in a bad, bad place.

June 2012 - pregnancy 3 (IVF 3):

Day 3 SET after a bumpy cycle and premature luteinization (premature progesterone rise). SET on day 3 is pretty low yield and at this point 6/8 of the embryos we have transferred via IVF have not implanted, so our IVF history doesn't bode so well for day 3 SET, but it is what it is. We are super surprised to get a +hpt at 6dp5dt.

Guiding initial thoughts of pregnancy 3: A singleton pregnancy with strong implantation bodes well for us. There is no reason to believe this won't work, other than the fact that it never has in the past.

beta 1 (12dp3dt): 138
beta 2 (14dp3dt): 139
very early m/c at 5w2d

Continued guiding thoughts: So clearly early implantation and a solid first beta doesn't necessarily stop the pregnancy from falling off a cliff with style. Weird…I thought most chemical pregnancies started with dubiously low betas and late implantation. Seems more likely due to a maternal factor than a genetic problem, but that's just a guess.

new neuroses developed: A +hpt early on or a nice first beta doesn't protect against a chemical pregnancy or early miscarriage. Those beta hCG numbers can come crashing down from anywhere.

October 2012 - pregnancy 4 (Clomid/Prednisone/TI…surprise!)

+hpt 11dpo (I just corrected that from '6dp5dt' - apparently I am still in disbelief that this wasn't an IVF cycle!)
beta 1 (13 dpo): 146
The pee sticks keep getting darker.

Guiding initial thoughts: Expect nothing. All bets are off. Well, a nicer way of saying that is "expect the worst, hope for the best."  My symptoms come and go. I understand that every tiny thing could mean either nothing or everything, but only time will tell, and the wait is maddening. I have now been waiting over 72 hours for the results of beta 2 (in Israel I never waited more than 2.5-3.5 hours for a beta result!) and the wait is driving me nuts, as is the knowledge that by the time I receive the result, it will be obsolete (i.e. so 3 days ago!).

new neuroses: Everything. Pregnancy is a mine-field that can be cut short or go wrong at any point due to an endless combination of disasters. But with each new chance, there is always the possibility for all of the stars to align so that we bring home a living child, and that little bit of hope propels us forward, and so we keep on keeping on. In the meantime, I think I need a therapist.

Oct 31, 2012

the (great) unexpected

So…this is very strange for me. This was something I wasn't anticipating at all. I actually feel pretty uncomfortable writing about it. In my last post, I mentioned that before getting back into the IVF grind I was doing a long-shot Clomid/Prednisone cycle, just to help pass the time.

I also mentioned it was a bit of an experiment - I thought it was a little uncanny that both of the 2/5 IVF transfers when we used Prednisone I conceived. With IVF, there are so many variables, it was obviously impossible to speculate too much about the role of the Prednisone. I did wonder, though, if our problem was really of the implantation/autoimmune variety, whether I might be able to get pregnant with minimal intervention if I was on Prednisone.

It still obviously seemed like a total long-shot with my history -- after 6 IUIs and 5 IVF transfers you don't realistically expect to get KU with $60 worth of pills. But it happened. Y and I are both shocked that this far-fetched experiment to pass the time before our upcoming IVF consults following the epic Canadian wait has worked…at least so far.

Even if this cycle doesn't result in a successful pregnancy, I think it has taught us a lot. We really need to re-address some of our most basic assumptions about the nature of my infertility and its treatment -- specifically, considering the autoimmune angle.

I got a positive hpt at 11dpo, the day after I wrote my last post. Today my first beta at 13dpo was 146. Obviously, we are feeling very cautious and guarded. We've experienced so many different ways of pregnancy not working out, it feels like a bit of a mine field and it is really hard to have any expectations at all, especially this early.

Also, I have been spotting the last 2 days which makes me pretty nervous, though the first beta helped to allay my fears a little bit. I go back on Friday for beta 2. Please keep us in your thoughts that this turns out well.

I am feeling really guarded in sharing the news this time around even on the blog -- still trying to process this really surprising but obviously extremely welcome news myself.

Here we go again. Let's do this.

Oct 28, 2012

well, hello there :)

After a lengthy break, I am going to try to get back into the writing groove again. I know I have been pretty silent over the last few months, but I have been following along in my reader most days and thinking of all the courageous, strong, smart, and funny women out there. My grief does tend to turn me inwards for long periods of time and it is hard for me to write, but now that we are getting back into the concrete stuff, there should be more to write about than my sadness.

Where are we? Well probably pretty close to getting right back in the thick of things. After our long Canadian-style wait, we have 2 consults coming up the week after next. I am due to get AF in a few days and then I go to get my AMH drawn and the usual CD3 bloodwork. Y did a new S/A last week and he also did the DNA fragmentation test for the first time.

I have a SHG scheduled for the week after this coming one, right before we dive into the consults. The SHG will be important because we need to reach a final consensus on those damn fibroids before proceeding (the current leaning is no surgery, but we need to reach a confident decision) and because it will hopefully rule out scar tissue/adhesions.

My cycles have been a good deal shorter and lighter since I gave birth and the complications that came after, so the hope is that the shorter and lighter cycles are a good thing and not indicative of Asherman's Syndrome, which I am unfortunately at pretty high risk for due to my history of multiple D&Cs and retained placenta.

I am sure I will have lots to talk about when we look into both clinics we are considering. Both clinics have different options which could be interesting or useful to us -- Clinic A has a very well-regarded RPL specialist who conducts clinical trials in that area. They also do a lot of blastocyst transfer and offer PGS (need to clarify which type of PGS). Clinic B offers endometrial co-culture and routinely prescribes intralipids.

We might end up not going for any extra bells and whistles at all, but it will definitely be interesting to learn about the different possibilities and also to have a fresh set of eyes review our case. All that being said, I am still feeling ambivalent about getting back into cycling from an emotional perspective, not to mention the immense cost.

In short, these upcoming consults will hopefully be worthwhile and interesting but we are not yet 100% committed to cycling again in the near future. Also, the SHG results could be a big game changer -- potentially surgery vs. beginning the path of working towards surrogacy if Asherman's is an issue.

This past cycle has been somewhat of a hail-Mary-type (I don't think we have an equivalent expression in Judaism) long-shot attempt...since I am still unexplained and we thought it was uncanny that the 2/5 IVF transfers that yielded a positive pregnancy test were the only transfers I took Prednisone, we did a cheapy Clomid/Prednisone cycle this month just for the hell of it before we prepare to shell-out big time to re-enter the IVF circuit. I will of course let you guys know if anything comes of it, but it is a real long-shot.


Oct 7, 2012

the worst thing that could happen

Funny story: We met a couple at my in-laws' synagogue today who had lived in Israel for a while. Their 4th child was born in Israel at Hospital X. The wife was saying to us that having a baby in Israel was difficult and that Hospital X was a bad experience for her. 

She detailed her list of complaints (I do not judge them at all, but suffice it to say her and her child are both happy & healthy today). Y and I were both smiling and nodding when she exclaimed "Omg! I hope I didn't just scare you from having a baby at Hospital X!" Once she walked away, we couldn't stop laughing. Needless to say we didn't mention our twins born there.

Sep 2, 2012

dreams

Our housekeeper back in Israel would base major life decisions based on revelations in her dreams. She believed strongly in the ability of dreams to inform, clarify, and portend. She was a little nutty (though a very conscientious cleaner).

A few nights ago I had a pretty interesting dream. It was the first adoption dream I had in a couple of years. The last one I remember distinctly must have been around two years ago, when we were doing IUIs. In this dream we were presented the option of a newborn boy or girl or both for adoption.


The interesting twist (because this was a dream there has to be an interesting twist) was that we were also involved in surrogacy at the time, but we didn't actually know who our gestational carrier was or whether she was in a successful pregnancy.


So in the dream, it was unclear whether we were being offered our own biological children, whether neither of them were our biological children, or whether it was a mix. Y was very concerned with clarifying the origin of each baby before agreeing to anything.


The revelation in the dream was that I hardly cared -- if the information was readily available, I wanted to know it, but in the absence of that, it didn't really bother me whether or not the children were biologically ours.


The dream actually wonderfully clarified for me that I just really want to be a mom. I want a child in my home that is our child. The details of how that child comes to be -- in whose uterus and with whose genetic material has become a lot less important to me.


For a long time, I wanted to be pregnant so so badly. I wanted to experience pregnancy at least as much as I wanted to experience motherhood. I don't count the first trimester losses because I never got very far, but with the twins I was really pregnant and I got quite big, too.


I found out being pregnant had its magnificent aspects, for sure - watching my belly grow and swell and my body change to support life, feeling the babies, the happy ultrasounds. But for me, pregnancy was also not everything it was cracked up to be. I had a difficult go of it and spent a lot of my pregnancy in bed at home or in the hospital.


The total length of time when I had a real bump but was still out in public, not holed up in my bedroom or a hospital room, probably comes out to about 3 weeks. I still associate pregnancy with illness and fragility. I think deep down it's really better not to move.


I see very pregnant women all of the time doing normal people things -- shopping, pushing strollers, exercising. All of it just blows my mind. They can do all of those normal people things and the baby just stays inside, growing away!


I watched my body change in these extraordinary ways, I got the huge belly, but still I didn't get the babies -- or I did get the babies, but I didn't get the babies to bring home and keep, which is a pretty big detail.


Wanting to experience pregnancy and wanting a baby are two different things, it turns out. Now I am mostly focused on the part of the journey I've missed out on. It would be nice to repeat the first leg (pregnancy), albeit successfully, but I know the first leg surely doesn't guarantee the second leg (motherhood), nor is there an absolute requirement to personally complete the first leg in order to experience the second leg.


This forced break is allowing me lots of time to reflect and entertain different possibilities more seriously. At this point we are on a forced break because in Canada it takes months to get an initial consultation with a RE. We are currently scheduled for mid-November, and then it would take a couple months after that to begin a new IVF cycle.


I have come to the conclusion that carrying my own baby and/or a genetic connection to the baby are not deal breakers for me anymore. For Y it is different -- I think he is more open-minded towards surrogacy but adoption is still out for him. I can't force him to get there.


I don't think either of us is quite ready to abandon traditional IVF and using my uterus, but it is both liberating and comforting to be open to the possibility of other options (surrogacy, adoption, etc).


I am trying to set some sort of timeline for us pressing forward with new options -- drawing a line at what point I give myself permission to say I've had enough and it is time to pursue a new option. Ultimately, I am willing to be flexible with my timeline when the milestones and dates on it loom close if it is appropriate, but for now a self-issued ultimatum might be my ticket to freedom.



Aug 12, 2012

what we (think) we are owed

A few weeks back, Y and I went to our first infertility support group meeting. I am not sure that it was super helpful to us because most of the couples were at a different stage of their infertility journey, but the facilitator was great. One comment she made in particular stuck with me.

She said that when we first set out trying to conceive, we think that we are going to get the gold -- the gold being everything we want and on the time scale we want it. And then maybe it turns out it is taking longer than we thought and we need a little pharmaceutical help -- we are now going for the silver. Maybe then it turns out our problems are in fact pretty big so after the silver doesn't pan out, we're going for IVF  -- now we're aiming for the bronze.

Maybe after that we are in a position where we are getting comfortable with the idea of donor egg or a gestational carrier or we are pursuing adoption, and so we give up a little more of the original dream. I don't think the point was that any of the outcomes that aren't the first one -- everything we want and on the time scale we want it -- is somehow ultimately less good, but more that in order to get it, we may be finding ourselves sacrificing more and more of our original vision and all the while time is passing.

The truth is, I don't remember the original context of her remark, but it crystalized for me something really important. When we found out we were expecting twins and then later on, when we found out we were expecting a boy and a girl, I felt like everything that had been taken away from me in this journey was suddenly and unexpectedly gifted back, just like that.

In other words, we were going to get the gold. It wasn't without lots of sweat, tears, perseverance, sacrifice, and hard work, but we would get our happy ending -- what we were owed. The world was suddenly a fair place again, just as I had always known it to be until infertility and loss entered our lives.

We would have the two children we would have had if we had control over our reproductive fate and in the same time frame! A son and a daughter! It seemed too good to be true, but we did work really hard to get there, so why not? Why couldn't we have it all, get the gold, after our shit luck until then? It happens to others in the infertility community all the time, really -- from zero to two -- just like that.

Everything that happened to us until then infertility-wise sucked but it was tolerable and livable. It was something I was willing to put up with and rationalize, if we could then just get our happy ending. For lack of a better term, it was all within the realm of normal infertility suckiness. Par for the course.

And while it might have seemed sudden and unexpected when it finally worked and we conceived two beautiful babies, I felt like we deserved it because we are fundamentally good people who had worked very hard to get there. (But the unanswerable question that many of us avoid altogether in the moments of dazed self-congratulations then becomes what about everyone else on a similar road who has not been granted the same good fortune?)

Owed, deserved -- what dangerous words and concepts these are. I think you can probably already see where I am going with this.

I wasn't naive about the risks of a twin pregnancy -- if I look back at my posts during that period of time I don't think I was every really happy-go-lucky or flippant about the pregnancy. But deep down, even when the pregnancy became complicated, I fundamentally believed we would get our take-home babies -- that this would be very hard and scary, sure, but that we would also all make it out of this alive.

Even if you are particularly anxious and fearful, I don't think you ever really believe that you will be the horror story. In fact, isn't imagining the worst over and over again supposed to be some sort of protection mechanism? I am pretty sure that I subconsciously thought so.

So, obviously, in the end, we did not get the gold -- we came really close but we didn't get gold. Or silver. Or bronze. Actually, we didn't even place, we just pretty much careened off the course entirely.

What I want to get back to is this idea of what we are owed and what we deserve. It is something I struggle with in the present constantly -- this notion that we do all of this stuff and go through all of these trials and therefore it has to lead somewhere. It all has to be for something -- to ultimately fulfill some purpose.

But sometimes it's not.

Many times I see that women who have achieved their happy ending attempt to rationalize what it took to get there and find some meaning in it. For many of us, the journey can never just be an endless trek of failure, pain, and suffering -- it has to mean something and it has to have all been for something. The alternative is just too depressing and soul-crushing. It is not too difficult to rationalize the journey if you do get the happy ending, as I would have if Aminadav and Naava had come home with us.

But what about when that doesn't happen?

I know now I will never get the gold. I missed it entirely. What I mean by that is even if I do eventually get my living child(ten) in one way or another, I have lost too much that is irreplaceable for it to ever 'make up' for what I have experienced and what I have lost -- there will forever be my son and daughter missing from our lives, and that is not something fixable.

Until I lost them, the loss and sacrifice that I had experienced along this road deeply affected me, but there was nothing I had given up or lost that was unredeemable or unforgivable with the good fortune of the twins. It's not that I would forget the journey, but I was willing to bargain this for that and this (6 IUIs, 4 IVF transfers, a miscarriage) certainly seemed 'worth it' for what I could get in return (a son and a daughter).

How do I shake this idea of being owed a living child for what I have endured? It is so naive -- and yet a testament to how good and straightforward my life was until infertility -- this belief everything I work hard at will be handed to me. Life doesn't really work like that, I know, but part of me can't shake the idea.

When I had the very early miscarriage that resulted from the IVF cycle we did after losing the twins part of me was like "C'mon -- what did you expect, A? Of course it didn't work out. It never works out for you. Don't you get it by now?" but part of me was suspended in disbelief "How could it not work out -- after all of this don't you just deserve for things to work out?"

Part of me just can't shake the belief in the Very American Happy Ending. Hard work = a great reward. I try to shake it but there is a girl underneath who still believes in it. And yet it is ultimately so damaging to subscribe to that idea when life keeps throwing lemons at you -- if life hands us what we deserve, what does that say about Y and myself?

I still try to bargain all of the time. It is disastrous. I think to myself -- if we couldn't keep Aminadav and Naava, then the second best thing would be to have twins again. A second chance. We deserve to have twins. Twins are so special, I think.

But I know this is totally unrealistic, especially because we plan to only do SET in the future (as we did with our last IVF) since another twin pregnancy is too dangerous for us. Even if we did transfer more than one embryo, realistically our chances of both sticking around are quite low given our IVF track record.

I keep reminding myself that the goal is to have one healthy, living child who I can carry to term. Let's not get ahead of ourselves and get greedy, here, I tell myself. So I guess along side mourning the loss of my particular, beautiful twins,  I also mourn the loss of ever having twins again, which often felt like something special to make up for the lousy hand we had been dealt until then.

I have lost too much to ever think I can have it all again -- the gold has clearly evaded me -- but still there is that stupid quiet voice who says don't you deserve a happy ending? This can't all be for nothing, right? Aren't you owed a living child? Or two.

How about you? Do you struggle with this idea of being owed something or deserving it? Did you feel the gold or silver or even the bronze was taken from you only to unexpectedly get it all back (or not)? If you've had your happy ending, do you rationalize what it took to get there?


Aug 6, 2012

searching for a new lightness

I used to smile A LOT. I was always a very smiley person. I also used to be kind of famous for my laughter, which was totally contagious. I can sort of boast about these things because it is so removed from who I am now. My fourth grade teacher overhead me laughing in a restaurant from another table without seeing my face and she instantaneously knew it was me. I was 22 years old. I hadn't seen her in 12 years.

People from all corners of my life always used to comment on my smile and laugh. It was something that stuck with them. My physical chemistry lab instructor approached me one day in the middle of lab, three weeks into the semester, and quipped disappointedly "A., I hear you are so much FUN! You haven't said one fun thing yet!"

In my new life, I never say anything funny, either on purpose or unintentionally, and I don't smile or laugh very much, either. I think I am actually a total downer to be around. I have been thinking lately that I wouldn't want to spend too much time around me. Poor Y.

I have slowly, over a long period of time, turned more and more inward. Most people who have met me in the past few years would probably describe me as awkward, serious, introverted, and well, whiny.

Infertility and loss has made me more empathetic and given me depth and maturity, but those things are much harder to see and appreciate, at least on the surface. Infertility and loss has also made me less vital, less zany, quirky and fun -- a muted, subdued version of myself. And I think I might also be less good-natured and more inclined to hold a grudge, especially if you were a jerk to me when I lost the twins.

More and more turned inward. I think that really accurately describes it. Not self-involved in a narcissistic or conceited sense, but in a darker self-obsessed way. Self-obsessed with my misery, my bad fortune, my inability to understand or answer all of the whys of how this came to be our lot.

I realized recently that I have been complaining a lot about stupid things. Mostly things that are within my control. And I realized this all serves as a cover. I think I have a compulsion to complain because of what really bothers me and how freaking unfair it is, but because it is not socially acceptable to talk about my infertility or my dead babies, I just complain about completely stupid inane stuff instead:

Y hasn't yet taken me to a baseball game this summer, we will probably never go, pity me, etc. etc. Read: My babies died and I am still incredibly pissed and sad and confused about it pity me, etc. etc. It must be so annoying to listen to.

Self-pity. Well, there is not much more to say than that self-pity really blows. No one wants to be proficient in the art of self-pity, but thank goodness, those of us who have gotten really adept at it are usually too self-involved to notice, save for the brief glimpse of self-awareness.

I wonder if I actually talked about the heart of it and acknowledged it outside of this blog like it is a normal topic of conversation: That I have had a really shitty, disastrous go of it conceiving and maintaining a pregnancy. That I had babies but they died and I don't know why things happened the way they did, but that it is really unfair and sucky. That I wish and pray for a living child every day -- whether maybe some of the burden would be relieved and I could find some lightness again and stop acting like a crochety old hag who is so hard done by.

I wish I could act like someone I would actually like to spend time with, but I am not there yet and instead I am too involved in self-pity and self-loathing to have an open heart. How can I find the beauty and the fun in simple things and in my friends and family again? Can I reclaim my smile and my laugh, even if I never feel my old, unhinged lightness again? And can I learn to find a new kind of lightness among the heavy things?

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.