More uncertainty

I was gearing up for a cheery post about having El Prima's family (or rather, 7 of them) stay at our place over the weekend, and how lovely it was that her sister mentioned the accident, and said she was so sorry we'd lost our baby. This was the first time I'd seen them since mid 2009 (though El Prima and the girls had visited them in Sydney a few times since we'd moved), so I was very nervous about what might happen. But it was all good.

Then I got a call from the Women's hospital this morning. The pathologist had looked at the pregnancy tissue from my miscarriage and was concerned that it may have been a molar pregnancy. It will take about 4 weeks for the pathology tests to work out whether or not it is actually molar, but during this time, they told me it is important not to get pregnant again, as this can be dangerous. No chance of that happening.

F#$k. Just when I manage to swallow one nasty reality, there's another waiting for me. It is a pretty tiny chance that this will be molar, or even if it is, that it will require serious treatment. It may just be that I have to have further testing to ensure my HCG level goes down. And even the worst case scenarios (requiring chemo etc) still have good prognoses for survival and for subsequent fertility, though you may have to wait 6-12 months to start trying again. But whatever faith I once had in statistics is pretty much gone now. An old friend contacted me via FB after we lost Z, to send her love and thoughts and to let me know that she'd just been through a molar pregnancy. I had no idea what that meant at the time. The good thing is, she's recently had a healthy baby girl. I'm holding onto that thought for the moment.

The Snail

(detail from Frida Kahlo, Henry Ford Hospital, image from here)

Thank you so much darling ones. For the hugs and the donkeys balls and the love and light and thoughts, stories, your own tears - all of it. I'm so sad that so many of you know what this pain feels like (and that some are experiencing very similar losses at the moment too). It makes such a difference to know that others are cussing this loss for us too. I had no idea how many women have been through similar experiences - thank you for sharing your stories here - particularly what choices you made in similar circumstances.

Our doctor hadn't given us the medical (ie, non-surgical) option - the drug involved, RU486, was banned in Australia for nearly a decade thanks to a deal between a fundamentalist senator and the previous conservative government (well, it was listed as a legal drug, but the Health Minister - a conservative, anti-choice catholic - was given a power of veto to prevent it being used). Then, in 2005, a cross party group of women parliamentarians worked to lift the veto. But all of this was very far from my brain when we had our scan last tuesday morning and were sitting shell-shocked in our doctor's office.

I had thought, very pragmatically, that I could teach my seminars as planned on the Wednesday and Thursday, and then go in for the surgical procedure on Friday. But the anger wasn't going anywhere. I didn't feel safe to drive, so I walked and caught the tram to work, hoping that none of my students would see me sobbing. Finally, I spoke to my boss, let her know the diagnosis, and that I wasn't realistically going to be able to teach that day or the next. I haven't ever felt so violently angry as on that Wednesday morning - I'm just glad I got home again without seriously hurting anyone or myself.

Part of that white hot anger I think was with myself - for thinking that I could just timetable my grief around my work responsibilities. But the whitest white-hot anger focused on the planned procedure on Friday - I had handed my body over to the IVF people so many times already - I didn't want that again, not for something my body could most likely do on its own. I called our IVF clinic to ask about the medical option, and finally after a few hours, heard back from our IVF doctor - yes, it probably was possible, but you needed to be specially registered in order to prescribe it, and he wasn't. He gave me the name of a private provider, and I drove nearly an hour to get to an appointment on Thursday, but after discussion with the doctor there about wanting to be 100% sure this pregnancy was not viable, decided to wait and have a further scan before doing anything else.

All of which led to me and El Prima leaving the house in the morning dark of a tuesday morning - just like the week before when we'd been on the way to our scan, but this time with a tired sadness rather than the excitement of 'we might see a heart beat today'. The scan showed the same little empty sac - I was readier for it this time, and in a way it was relief - I wouldn't have to wonder if there might have been a chance. I opted to go to the public women's hospital, rather than with the costly private provider, and the Womens' protocol for "medical management" involved a day admission. While I could have done without some of the prodding (why put in an IV canula 'just in case'? Painful and unnecessary!) I very much appreciated the pethidine, and the nurses were universally kind and compassionate. This is the hospital adjoining the general hospital where I was taken after the accident, and where Z was born, with the assistance of obstetricians and midwifes from the womens, so I feel that at least this PLB has another connection with his/her sister.

I see now why Frida Kahlo included a snail in her painting, "Henry Ford Hospital" about her 1932 miscarriage to represent the slowness of the pain. For me, it took a while to allow myself the slowness - to realise that this loss can't just be skipped over so I can move onto the next thing. It meant so much for me to be pregnant - how could I expect it to mean nothing to lose this pregnancy, even if it were only very early in the piece? I knew all along that this was a very tentative, border-line pregnancy, but in a way that only made it more precious. Last night, El Prima took the girls and me out for an impromptu family dinner. For the first time since our bad news, we really laughed. I wish we had more family dinners to look forward to with the PLB, but I'm glad we had this one while we could.

I feel hopelessly sappy to be mourning for this tiny sac which never even grew the beginnings of a neural tube, but I'm learning not to expect these things to work logically. A little pink crepe-myrtle tree is waiting on our porch to be planted near Z's pomegranate tree.

Blighted

This morning's scan showed not much more than Thursday's - the beginnings of a yolk sac, but nothing more, and the gestational sac itself was way behind the size it should be by now. This means (according to our doctor) that it's a blighted ovum, "though that doesn't mean there was anything wrong with your eggs", he added helpfully.

So what now? Wait to miscarry naturally, or a suction curretage to speed things up. Our doctor recommended the second option, because apparently for miscarriages after 6 weeks, they are often incomplete and require a curretage anyway. Gah. As my best mate put it, I want neither of these options.

I've cried so much today, and now it has peeled back into a white hot rage - at our stupid extortionately expensive clinic, my stupid body, our stupid car, every stupid f$#ing 4WD on the roads, the ridiculous car-dependent culture I live in and this stupid little thing that was persistent enough to stick around through all that bleeding, but not persistent enough to grow into a baby. And which is still making me nauseous and giving me sore boobs. It is a destructive, petulant, three-year-old anger and yet I can't throw enough things to satisfy it, and calming adult voices only infuriate it. I'm not a very nice person to be around at the moment, as El Prima has found out.

Please don't tell me any stories about blighted ova you have heard of that grew into lovely healthy babies - we've already put this scenario to our doctor, and with three scans, he is 100% certain that this one's going nowhere. That doesn't mean I'm taking his advice and booking in for the procedure. At the moment, the idea of bleeding my guts out is almost appealing.

oh man.

I'm back in bed on a day when I should be teaching after some scary bleeding yesterday. I'm trying to think of how I can convey 'scary' without grossing people out too much. And having been this scared in the last 24 hours, I don't really want to put others through the same fear. We've just had another scan showing that the PLB is still in there (yay! though a fetal pole hasn't magically appeared yet). It is amazing news, given that yesterday, when I was I trying to leave work, and I realised I wasn't just bleeding, but passing big clots and blood suddenly gushed down my legs and onto my new white sandals, I thought it was all over. Horror movie scary.

Our clinic was closed so I spoke to my GP on the phone, and he told me to go to emergency at the womens. We did, and after an hour's wait (during which time we bumped into friends coming in for a 38 week check up... arg!) saw a doctor. They weren't able to scan until the morning, but they took bloods, prodded a little and monitored me. The blood draw was the worst I've ever experienced in 4+ years of fertility treatment - apparently my blood was sticky and my veins elusive. Ow. Thankfully El Prima was there so she could make faces at me and distract me. The doctor was lovely - he told me my HCG was in the 10,000s which was a good sign, but he wanted me to come back in the morning for a scan.

The next morning, we turned up at the appointed hour only to hear that the doctor had gotten their policy wrong, and they wouldn't scan me unless it had been more than a week since our last scan, and since I'd just had one on Tuesday, they couldn't do it today. Gah. At least the nurse did tell us the HCG level from the night before (14,515) and suggested we contact our clinic. Thankfully, our clinic were willing to 'indulge' us with a scan, and there it was, the little gestational sac, still bang in the middle of the uterus, saying "What?" as if nothing at all had been happening. Cheeky little bastard. No sign of a fetal pole or yolk sac - still a bit of a worry, but still consistent with the embryo implanting maybe a week late. Or with various other not so lovely scenarios. So we're back to where we were on Tuesday - waiting and wondering until next tuesday.

You guessed it...

Inconclusive!

Yes, there is a lovely little fetal sac. (hurrah!)
Yes, it is in the uterus, where it should be. (whoo hoo!)
Can we see a fetal pole / fetus / heart beat / tiny spongebob squarepants? Um... no.

According to our doctor (who did the scan - yay for not having to wait for the technician to send results through) this isn't as bad news as it could be, because it may just be consistent with our little speck being a very slow starter. It is still very early days (6w3d, or 4w3d from egg pick up), so this kind of thing only *just* becomes visible around now. Apparently sometimes embryos 'drop a few cells' before implanting, and that can set them back a few days - but nonetheless grow to become lovely healthy babies. Or sometimes not. Who knows. who knows!

What now? Stay tuned, because we have to go back for another scan, same time, same bat channel next week. Gah! As El Prima said, we're getting the good news one tiny spoonful at a time. Slightly frustrating, but still better than the bad news we were fearing.

Thanks so much for all your good wishes. I hope this little speck realises that it has an international cheering squad!!

*P* Being here

These are the things I would love to believe mean something:
- half-waking, trying to get comfortable in bed and thinking, "ow, boobs!".
- extreme 'right now or I'll eat your head' hunger mixed in with queasiness.
- having to get up in the night to pee.

Is my hope playing tricks on me? Meanwhile, I just continue to hum my vague little 'who knows, who knows' song.


-----

Sydney is so thick with 'before' memories. They are heavy on the ground, mostly still undisturbed because I have spent so little time here since 27 December 2009. The sight of kids in the school uniforms from Snacky & Snazzy's old school, the shops where I bought ordinary, inconsequential things, the road that led to our house - all of these things can't fade into the background until my brain has trotted through its 'last time I saw x, Haloumi was here' routine.

Today, I returned to one of my favorite Sydney spots - the women's baths at Coogee:


Image from here.

The last time I was there, my haloumi-filled belly stuck out obscenely between my bikini top and bottom. I greeted other swimmers with my stretchmarks. That belly was remarkable - everyone remarked on it, speculated on Haloumi's gender and wished me well.

I first swam in this rockpool nearly ten years ago, when I was doing a temporary work placement in Sydney. And when I discovered it, I thought (or kind of *knew*) that would swim here when I was pregnant. Even in the pre-El Prima days, I was so hungry to have a baby, that that moment in the rockpool was one of the things that propelled me most strongly to move to Sydney.

I had so many unpregnant swims here over the years - some involving mildly athletic laps, some snorkelling and marvelling at the starfish, shellfish and once even an octopus under the surface, some splashy and noisy with El Prima's girls, some quiet and contemplative with no one else in the water. And so many beautiful pregnant swims with Haloumi - contemplating the sea snails and feeling her kick almost in time with me.

I've seen it in a storm, with the waves crashing over the rock wall, I've seen the surface sparkle with a beating sun, and I've eyed off the greeny-blue depths when it was far too cold to swim.

And now, who knows? I'm egging on this tiny potential, hoping it is in the right spot, hoping it isn't ectopic, molar, blighted, all kinds of words for 'lost already'. To swim there today felt like an act of love - towards my tentative self and this little question-mark of cells.

a little thought

Around the time of our second BFN last year, El Prima and I turned up to our local SANDS meeting (stillbirth and neonatal death support) to find that every other couple, bar the convenors, was pregnant, including the ones who'd only started coming the month before. Better still, I found out that the psychologist who had urged me to wait a year before trying to get pregnant again, was herself pregnant. Within a few days, we found out that other dear friends, who'd lost their child six months after we lost Z were pregnant. It was such beautiful news for them, but I found myself feeling stingy with the goodwill - it felt like I'd been patiently waiting my turn, and had suddenly realised that there actually wasn't a queue at all - everyone else was helping themselves. And for whatever reason, I just couldn't manage to do the same.

From where I am now - holding four positive tests tightly against my chest and wrestling with hope and fear over next week's scan, it is easy to say that there is no fairness, conception happens when it happens - it (like death) is one of the ultimate uncontrollables. But I know that was no comfort to me when the BFNs kept coming and I wondered whether I'd lost the only child I'd ever conceive (don't laugh - I'm good at melodrama).

So that means I'm very conscious that my moaning on about my uncertainty where at least it does seem that there is some tiny little embryo to be uncertain about for the moment may be hard for you. Feel free to read or not read as you see fit, but please know that with every step I am sending love and the biggest, beef-i-est wishes possible that everyone who is wishing for a BFP gets it soon. And any posts blathering on about psychosomatic symptoms or thoughts about this potential PLB will be helpfully prefaced by a *P*.

Curiouser and curiouser

As promised...



This morning's number was 630! And although it was the same Nurse Realistic, she was much more upbeat this time. She's spoken with my doctor, and he didn't see any need for a further blood test, just a scan in a week's time.

When I started with my confused/excited, "So this might mean that it may actually be viable?", she did get all realistic on me, saying, "With all early pregnancies, but especially when your betas started low, we can't really confirm anything until the scan, but yes, congratulations. But if you do have any sharp pains or bleeding, don't ignore it, go straight to emergency."

So, somehow, my BFN of 15 Feb is starting to look a bit like a BF-might-possibly-conceivably-optimistically-be-P. It's now starting to feel like uncertainty of a much friendlier kind. Come on, uncertainty, welcome in.

My zen ran out last night

and now I'm just so impatient to know what is happening. I had fretful dreams of dodgy hotel rooms where one room connected to another and another and another. I kept waking up, thinking it was time to get up and go in for my blood test, even though it was 3, 4, 5am.

I think a little bit of hope has got under my skin, and with it, the fear that it will be dashed. In some way, I'm terrified that there might actually be a little speck of potential to mourn if the news is bad, and that that mourning may go beyond the sorrow I've already felt with the negative test and the bleeding, not to mention all our sorrow for Z. I've been ambivalent reading these lovely stories of tiny betas turning into beautiful babies, because I'm so scared my story won't work out like that. But there is a tiny potential that it will, and I want to treasure it while it exists.

In a few hours, I'll know a little bit more. If the numbers go up again, I think they'd like me to have a scan towards the end of the week when whatever-this-is might be visible, so that can see if it is in the right spot. And if they go down, probably just more blood tests until the level drops below 2. Thanks for being here on the rollercoaster with me xxxxh

This almost deserves a spreadsheet...

Okay, so today's blood test (20DPO) showed a hcg level of 201. This time, I got the call from the specialist early pregnancy nurse. She asked me again about the bleeding, I explained that it had been heavy, like a normal period. That it had stopped now.

Nurse: "It's clear that there has been implantation, and that you've got pregnancy hormones being produced, it's just that those levels are much lower than we'd like to see."
Me: "So, have you ever seen a viable pregnancy with those kinds of numbers?"
Nurse: "I have, but it's important to be realistic about your chances here - realistically it is looking very unlikely at this stage."

Ha ha. Realistic! The realistic view is that they have no idea what is happening, and neither do I. The odd thing is, I'm kind of getting used to this limbo land. It's beginning to feel like a soapie where I can observe the drama knowing that while there will always be "something happening", it is never all resolved. Which is probably not bad practice for life generally.

Clearly, this little embie is making a go of it - I'm sending it good wishes and hoping it is in the right spot.

The next bloodtest is on Monday morning. Either way, on Monday night I'm heading up to Sydney. I booked the flights a few days ago when I was sure that this cycle had been unsuccessful. I've got lots of good excuses for spending the week in Sydney - I'll see my Phd supervisor and attend a coursework unit, and it's also Mardi Gras season, so after sitting last year out while El Prima went and had fun, I'm going in the march and out with friends. I also had an ulterior motive, in that if I did happen to be ovulating while I was up there, I'd be in the same city as our donor, and a fresh insem could be possible. But now, who knows? I feel like at least I've got a 'plan b', whatever happens.

Meanwhile, forgive me if I start making spreadsheets...

Does my reproductive system think this is some competitive reality tv show where you can string out a result across four ad-breaks?

This is just getting a bit embarrassing. I have to have another blood test on friday - they still don't really know what is going on. This morning's result was 78 - higher than saturday's, but too low to be viable (especially given the bleeding). So the range of possibilities has narrowed to two. The nurse explained that either the embryo implanted for a while, but then (maybe saturday or sunday) decided not to stay, or it is still implanted, but somewhere it shouldn't. "What we want to see", she says, "is your levels go down to below 2 before you can really think about a next cycle". I've been given the warnings about ectopic pregnancies and when to head off to emergency, but have been told it would really be a bit early for anything like that just yet.

Maybe I was bracing for bad news, but I'm strangely encouraged by the thought that this little embie made such a valiant attempt.

Thanks dear ones for all the support in this waiting time. xxxxh

Huh?

Now I'm just confused. I had my blood test this morning and it was a faint positive...?!? HCG of 37. Which I think is low-ish for day 14dpo, but still positive. Given the bleeding, I really can't see how a little embryo could still be in there, but who knows. I go for another blood test tuesday morning. Until then, I don't know.

My gut feeling is that it will be negative by then, but I guess the fact that there was some hcg is a good sign, even if we're not successful this cycle. (When I was pregnant with Z, my hcg at about day 22dpo was 2063)

Nope

The plan was, that if my period hadn't showed up by friday, then we'd test again first thing friday morning. But looks like we won't have to waste another test - I've had some bleeding today, more than just spotting, so I reckon we're out of the race. Gah. I'm kind of numb about it - I got in early and did my crying and gnashing of teeth on Tuesday. Now I just feel silly for believing that such a tiny thing could actually turn into a baby. (of course they often do, just not in this case)

Thanks so much for all the lovely words of encouragement - it certainly got me through Tuesday and Wednesday! xxxh

10 dpo

I had a very vivid dream that El Prima and I were in a truck with two blokes. I was driving but it was very difficult to see because for some reason, the driver's seat was behind the back seats of the cab, and the truck was up so high. The two guys were sitting in front of El Prima & I - their heads were in my way, so I couldn't see the road. I was trying to drive along a narrow driveway in a fancy apartment complex, but I missed and the truck went crashing off a cliff. We all got out, but the truck hit other cars, and one of them rolled over El Prima. I was so distressed, but she crawled out from under it and was okay. I didn't see what happened with the two blokes - they ran away.

(Still talking about the dream) El Prima and I were running away - we thought we'd get in trouble for damaging other people's cars. The apartment complex was a very fancy, retro style one. Apparently my great aunt lived there, so we ran into her apartment and grabbed two yellow towels. As we were trying to sneak out, there were lots of people walking in - saying hello to us and being friendly - and I felt terrible and duplicitous because I was smiling at these people but also trying to run away because I had just caused a catastrophe, which they were about to discover. Better yet, someone complimented us on the towels, which I'd just stolen from my own great aunt.

Then, in that half awake time, after the alarm had gone off but before our brains had started working, I thought (in this order)... it is Snacky's birthday (my stepdaughter) ... it is the 15th... our egg pick up was on the 5th... so that would mean we are now 10dpo, and I can test... because I'm sure I'm pregnant...

So good old lizard-brain convinces me to test. BFN. Not a shadow of a line. El Prima thinks we tested too early. I know friends have seen a faint line at 10dpo. But this result is probably correct.

I pushed and got myself to work, but now I'm here, I just want to run away. I know there is no running away from this. After we lost Z, I was so confident in my status as 'pregnant woman' that I was sure it wouldn't take long to be that again. And I think part of the bargain with myself about doing IVF was that it would be "easier". Less of these heart-breaking bfns. A 40% chance each try rather than a 10 or 20% chance. But 40% still isn't all that much. In legal terms, it wouldn't even get you a win on the balance of probabilities. But (here's what I tell myself) this is the nature of the beast. Trying to make babies is a big game of uncertainty. I know all that but I still find this so hard.

One year on

And our baby rose bushes are in full bloom again. I know I sat there, our our porch, hiding behind the rose bushes and planning Z's memorial, but it feels very distant. In amongst the buzz of our first IVF cycle, I'm glad we had time to go and visit Z's little spot, and take her some of the new roses.

Everything feels very quiet now - waiting to see what will happen.

where did it go?

It has been a big week, but in amongst the cyclone drama, being 'harvested' and taking a little embryo on board, something went missing.

All that bravado, energy, confidence (and along with it, my ability to concentrate and engage at work) is just gone. I was feeling so sparkly and amazing a week and a half ago, now not so much.

I hardly feel fit for walking down the street, let alone having a 'collegial' conversation with my workmates (not that I see them all that often). I spent much of yesterday in bed, and my inclination would have been to stay there, if I didn't have to work for a living. I'm not in that much pain anymore, but I still feel zapped. And while it is nice to hide under a doona for a while, I know that no one else can do the hard bits, no one else can live through this - but the thought of doing it myself feels impossible at the moment.

Thanks so much for all your beautiful good wishes. I feel like a big grumpy ingrate to be morose after all that. But just imagine how much lumpier and grumpier I would be otherwise!

Done

Of the 12 eggs, 10 were mature, 6 of those fertilised, 4 kept growing. One (apparently the 'best looking' one)* was transferred, the other three, the clinic will try to freeze. We saw the one we transferred on the screen - it looked like this:



Two even little cells. Which may now be wandering around somewhere in my uterus - really, we have no idea, and we just have to get used to that state of uncertainty for the next two weeks. I think they are pretty magical little cells, even if they do something other than make a baby. Welcome aboard, tiny speck!

* We didn't really even toy with the idea of transfering more than one embryo. The higher risks of a twin pregnancy were something we really wanted to avoid, even if we quite liked the two-babies outcome.

A Dozen

Twelve follicles & a dozen lovely little eggs. Not organic, not with all those ivf drugs, and not really free range, since they'll soon be getting a rather forcible ICSI-style introduction to some spermy boyfriends, but still, twelve little spheres of potential.

The procedure itself was no big drama - whatever sedative they used is nice & cruisey (but doesn't make for very proficient typing :) it feels like I'm wearing big fuzzy gloves). It was just like a little sleep. Clinic staff were lovely - with me and with El Prima. It was odd to be back in a hospital environment again - so easy to slip back into patient mode.

Now home, munching down leftover broccoli & gorgonzola pie made by the gorgeous matt (one half of our favorite gay boyfriends - we cooked & ate at their place last night).

I'll be back there Monday for transfer. In the meantime I'm practicing just being here - not wrapped up in any particular hoped for future. Just here, on the bean bag, enjoying the saturday midday movie and the last bit of this pleasant fuzzy feeling.

Showtime! (and a big sigh of relief)

You know that feeling, when you think, perhaps my life is a little *too* exciting? Thankfully my mum and brother & sister-in-law all weathered Cyclone Yasi well in Cairns - it hit hardest further south, where buildings in Tully and Innisfail were demolished. I think it'll be some time before the full damage is known. Between them, my mum and bro have now escaped the 2008 Black Saturday bushfires, a Bolivian uprising, at least four car crashes and a cyclone. Lucky buggers. Phew.

And it is nearly showtime for the little ovaries that could - I just spoke with our clinic, and I'm scheduled for egg pick up on Saturday morning. The other possible option was Monday, so I'm grateful to be getting it over and done with soon. It is hard to tell if it is from the ivf drugs or a blocked ear (from swimming in Cairns) or general cyclone-related craziness but today and yesterday I've felt very off-balance and tender, with a wierd low-level nausea. If my ovaries made noises, I reckon they'd be making those submarine depth-sounding 'pings'. Quite twingey. IVF veterans, does that sound familiar?

If all goes to plan, it will mean we'll do the embryo transfer on Monday - exactly one year after Z's 40-day memorial & due date. An auspicious day, I think.

I like the idea of a link between her and this new little chain of possibilities. And besides, isn't it always a big sister's job to steal the show?

A big dose of cyclone uncertainty

I was doing so well getting comfortable with uncertainty (ha ha), and then I got a text from my sister-in-law. The cyclone we thought would miss them is now heading almost directly for Cairns, where she lives, with my brother, and with my mum nearby. It has been upgraded to category 5 - which puts it in the ranks of hurricane Katrina. My brother was at sea (he works on dive boats on the great barrier reef), but thankfully, he got back to shore last night, and is now holed up in their Cairns apartment with mum and my sister in law.

There are lots of comforting thoughts I can have - that theirs is a cyclone-proof building, recently built, that they are on the second floor, with lots of mattresses up against the windows, water, food, and phone and internet access (for now). But I'm so scared, and the anxiety I thought I had just got a grip on is back with a vengeance. Those little budding follicles don't need the extra stress hormones though, and really, there is nothing to do but wait and see what happens with this storm.