Why we get screwed up...

I'm interested in the psychology of pregnancy, given my own disastrous experiences and the really horrible aftermath, that I still live with every day. I read something in a newspaper recently which may encapsulate the journey a woman's head goes through when she finds out when she's expecting a planned a baby. This is a quote from a newspaper from Sarah Storey, who competed in the London Paralympics for the UK team. She and her husband planned to have a baby after the Paralympics, and, lucky girl, she's found she's pregnant only a matter of months after the event. At 13 weeks gone, this is what she had to say:

`` Mrs Storey, 35, told The Mail on Sunday that she had hoped to have a baby soon after London 2012 so that she would be able to compete at the Paralympics in Brazil in 2016. 

‘We were very fortunate that it worked out the way it has and it’ll be three years before the Games in Rio so the baby will be running round and almost ready to go to school by the time it comes round,’ said the cyclist, from Disley, Cheshire.''

I guess she must have found out at around 4-6 wks, and between that time and the official announcement, she's already mentally calculated 1) the age of the baby when the next Paralympics comes round 2) started to imagine that her baby will be running around and 3) will be almost ready to go to school. So basically in a matter of moments/weeks, she's already visualised how much her life will have changed in the years ahead. She already has new plans and hopes for the future because of this baby. And not for a minute can she imagine that it can't come about. The due date is when her baby will be born alive and healthy. By Christmas her baby will be X months old. For Y family event the baby will be Z old. And so on. I think this must be true for almost all women who fall pregnant with a wanted baby. And when it doesn't work out, that's when you're really screwed. Anything that happens to alter that specific future makes those events, when they arrive, terribly sad. For the vast majority of women, they will be lucky in that their imagined futures will come true. But for those who lose their babies, family occasions such as Christmas, become a particularly cruel form of torture.  

Sad again

Sometimes I feel like I'm a human tent post, being repeatedly hammered into the ground. The feeling of relief, boardering on elation that i felt after the end of our IVF treatment has not lasted. What is it this time? DH has just told me that SIL2 is expecting. I knew this would be coming after her m/c earlier this year, so why do I feel such desolation?

It's our turn to spend Christmas with DH's family and already there will be five under thrrees, and SIL2 will be obviously imminent and i wouldnt be surprised if somebody else will be expecting 'happy news' by then too. It's very hard at the best of times dealing with small babies and pg women, so how will i handle next week's Christening, let alone Christmas. I've never dreaded Christmas until we started having our fertility issues and other people started having babies, but the pain involved in having to tolerate it all is heartbreaking. When will I stop feeling like this???

Woman loses all seven of her children

Recently in the UK, there has been debate about IVF babies potentially having 'three parents' - it's a new technique primarily intended to combat problems with mitochondria, part of the female egg structure. The woman mentioned in the link below has lost seven - seven!! - babies/children to this condition. How on earth did she get through it??????? Twice has been more than plenty for me.

http://www.bbc.co.uk/news/magazine-19648992

Livid

I don't know whether to laugh or cry. DH had told me a few days ago that his second brother and my sister in law would be having a christening for baby no2. Today BIL popped the invite through our door (i guess he didnt have the guts to knock and come in). I plucked up the courage to look at the invite. It was a big square picture of the new baby. Then I made the mistake of turning the invite. There, they'd listed the names of the godparents to be. SIL2 has been picked as the godmother!!! At this point I went nuclear with rage. I had been wondering this whole time whether their behaviour these past few years has just been thoughtless or have they been purposefully cruel. I had always wanted to give them the benefit of the doubt. But now I'm pretty sure what camp they are in.

End of a journey

I have to say that my one, overriding feeling since the end of our IVF treatment is one of relief. Relief that for the first time in four/five years we are not: trying to get pg/being pg and worried as hell/getting a devastating diagnosis/living with the aftermath of loss/waiting for IVF/going through IVF. Really, pretty much every moment of every day during these past few years has been dominated by one or more of those things. I feel relief that I've finally reached a point where I can do and plan things that are nice for a change. It feels like I've been let out of a prison. At the moment, I really don't feel like I want to have a baby at any cost. So far, the cost in emotional terms has been too high. Neither am I so hell-bent on having child that I am willing to put myself through IVF cycle after IVF cycle regardless of the financial and psychological cost. I would go as far as to say that I just want to wash my hands of the whole thing. I firmly believe I can still have a perfectly nice life without a child and I don't want to spend another five years being as emotionally crushed as I have been so far. I have longed for freedom, and now I have it.

All four were unbalanced

Just had the confirmation I wanted: all four embryos were unbalanced.

Snake

Looks like I spoke too soon. We've just been kicked down a snake again. Of our four embryos, 'none are suitable for transfer.' I don't know if that's because they were all unbalanced or whether some did not survive the biopsy or whatever, because the guy telling me this news did not have any of that information. So I'm very hacked off. In addition, our 'follow up appointment' is not for another four weeks. Four weeks wait to get more information. It can't change what's happened, but it would be nice to know the details. This whole thing has been another spectacular waste of time... and of hope.

Hope

An odd, unfamiliar feeling has come over me over the past couple of days, especially since yesterday. It's a feeling of lightness, replacing what I realise is a persistent heaviness. I think it's hope. We haven't been kicked down yet another snake yet; we are still hanging on to a rung on the ladder. As of yesterday, we still had four embryos. They'd survived since Saturday and today we'll find out if any of them are free of this unbalanced translocation. I realise that I've actually hated being alive these past three years. I know it is utterly ludicrous compared to people living with chronic or terminal illnesses, but I have actually hated being conscious this whole, entire time. My mind has not been able to stop thinking about our situation. From the moment I wake up to the moment I fall asleep, that's the dominate thought running through my brain. Every other activity offers only temporary distraction. You know it's got to be bad when you actually look forward, as I did on Friday, to the oblivion of a general anaesthetic. For half an hour or so my poor, exhausted brain was completely switched off, getting a much-needed rest from the never-ending battering of its own thoughts.

Embryos

They rang us this morning, and out of our nine eggs, five were mature and of these five, four fertilised. So we have four embryos. Let's hope they last till Monday when they will be tested for this BT.

Eggs collected

The egg collection happened this morning, and they got nine. We'll find out by the end of Tuesday whether we have any embryos suitable to transfer.

Olympics - a welcome distraction

For anyone living under a rock these past few months, yes, the Olympics are here and they've finally started. And for anyone living in London who somehow wasn't aware, every square inch of space seems to have been taken up by bright fushia flags proclaiming 'London 2012', meaning that there is absolutely no escape! 

But the whole thing is proving to be a welcome distraction from this IVF, which was fine at first but now feels like it's getting more tricky. Since I have PCOS, I'm reacting pretty strongly to the Gonal F injections I've been taking since last weekend, and the follicles on my ovaries look like an accident in a popcorn factory... This shot is very similar to what they look like: 

The reaction is so strong, that after four days on 150iu of Gonal F a night, they cut it in half to 75iu for two days, then told me to stop entirely. I've had a blood test and a scan two days in a row now, and at first they thought they might do the egg collection in two days time, but I guess they want to give it a bit more time for for more of the follicles to develop to sufficient size (I have 20+ of varying sizes on each ovary, yikes), so I've just given myself another 112.5iu of Gonal F tonight. At first I felt fine, as I have done since this whole thing started at the end of June, but now I'm getting lower back pain and I'm not being quite so blase about things. 

I'm back again at the hospital tomorrow morning for another blood test to see what should happen next. At this rate, they'll do the `egg collection' (what a lovely thought!) by the end of the week. 

Update

I thought I'd write a few words on what has happened since I last posted:

• my cousin has had her baby, a boy
• SIL1 has had No2, another boy
• SIL2 has had a m/c
• I have started IVF/PGD

I started the 'down regulation' at the beginning of the month, taking a nasal spray twice a day. On Friday I had a scan to see if it had worked, i.e. if my ovaries had been shut down. That showed that they had, and since I have PCOS, I had about 18 folicles on each ovary. So the scan was the green light to start the injections, and last night I had my first injection of 150iu of Gonal f, which will kick start my ovaries into producing eggs. I will inject once a day while still taking the nasal spray; then I will have a blood test on the Wednesday (25th) which will determine what happens next: if they need to alter my dose of Gonal F etc. Because of the PCOS, they will probably need to scan me every other day to make sure I am not overreacting to it, and risking ovarian hyperstimulation syndrome (OHSS). Anyway, that's where I'm at. Hopefully not long to go now until we find out how it's going to go.

Anniversaries

Today marks the first anniversary of the loss of our second baby boy. And six days ago it was the third anniversary of the loss of our first baby boy. I went to the cemetery where our boys' ashes are scattered and spent time at their memorial, bringing with me a couple of all-weather toys to put in front of it, along with the plants my husband had put there. It was a blazing hot, beautiful day, totally incongruous with the significance of the event. It was bizarre, standing there, thinking that about four and half years of our lives, almost all of our married life, has been taken up with heartache, each one arguably worse than the previous one. It's not something we were designed to withstand.

In a way I'm glad we've got to these anniversaries. While I want to start putting it behind me, drawing a line under things, I don't know if such a thing is possible, or at least, I realise I'm not in control of my feelings over any of it. As I've said once before, I'm sick, if not bored, of my existence on Planet Dead Baby. It's a place far, far away from Planet Earth, where the scenery is an unchanging grey, lunar landscape. And it's a planet with a population of one. Me. But perhaps I'm accepting this is where I have to stay for the foreseeable future.

Part of me is very discouraged by the realisation that possibly the only true source of release (but not the solution, by any means), is another baby - live of course. At least you have to spend most of your day focused on this new baby rather than on your dead ones, as I do now. The bloggers at From Under the Weeping Willow, Stillborn StillStanding and Knocked Up, Knocked Down have gone on to have new babies, and for the last two at least, they have stopped feeling the need to blog any more, which I'm enviously interpreting as a reflection of their 'happy ending'.

I was off work for seven months following our last loss, and to be honest, looking back now, the whole period is a blur. I wonder what I did in that time. Some people could manage to circumnavigate the globe several times given that amount of time, but for me, just getting out of bed and getting dressed was an achievement. It took me that long to pick my broken soul up off the floor and be able to put on my office 'face', but going back to work did not mean that everything was now fine. Far from it. Furthermore, it's the sort of experience that sorts out your friends and family into those who genuinely care about you, and those who are the fair-weather type. At least I now know who is who.

Frustration

A bit of an 'argh' moment I'm afraid. We went to our initial PGD consultation on Thursday and first off, they said that due to the waiting list, we aren't likely to start the actual IVF process until August or September. Having waited since early January for the probes to be developed, which they now are, to be told we have to wait another 3 1/2 - 5 months before starting treatment is utterly infuriating. It's it's not like I want to give myself injections and pump myself full of god-knows-what anyhow! Why oh why can't they run the waiting list for ivf concurrently with the probe development? Sorry, this is hardly the worst thing in the world to happen but I do feel like a toddler wanting to throw my toys out of the pram.

It's just that I've been stuck on Planet Dead Baby for so long now, I was really hoping that I was up for parole, but it looks like I'm going to have to try to hold on to what's left of my sanity for a little while longer.

I suppose it comes down to the fact that if we're going to get any of the - perfectly likely - scenarios of there not being any embryos to create/all the embryos are UBT/no normal ones survive to transfer/etc etc, I just want to face that sooner rather than later. And if it's a BFP then all the better, but I JUST WANT TO KNOW!!!! 

In the past four years I've had a m/c and gone on to give birth twice, with both babies being dead (sorry to be graphic) and with other family members rubbing it in by having perfectly healthy, live babies, I've had as much as one human being can take on that front. I guess another few months can't do any harm, but I still feel knocked back. Had sooooo hoped it would be sooner. I just feel I'm getting older and older. Grey hairs are appearing and being plucked out as and when  .

Sorry. Evidently feeling sorry for myself. Rant over.

Approval for one round of IVF/PGD!

It's now been almost 10 months since we lost our last baby. I wanted to write down how I felt after this time. I drafted something but got sidetracked before I pressed 'send'. At the time, I was in a very bad way. But since, the clouds have cleared somewhat. This is down almost entirely to the fact that I got a call from the hospital where we are going to have our IVF/PGD, to be told that our PCT (district health authority), has approved us for funding for one round of the IVF/PGD. I could have dropped to my knees in gratitude. It felt, and still feels, like this is the one piece of positive news that's happened to us in the last four years. I've perked up significantly since. It may not be a light at the end of the tunnel, but it means we are finally moving through this seemingly never-ending tunnel.

Edvard Munch's 'The Scream' could fetch $80 million at auction

Ha! So one of the four versions of Edvard Munch's 'The Scream' is to be sold, and could fetch $80 million at auction, according to press reports. If you read one of my early posts, you'll know that this picture summed up my state of mind when they found abnormalities in our second baby boy. To an extent, the inside of my head is still represented by that picture, though the sheer terror I felt at the time has ebbed and been replaced by other (unhelpful) feelings.

Since I don't think I've got a spare $80 million the last time I looked, I'll have to leave it to the international art world to pick up the tab...

 http://www.telegraph.co.uk/culture/art/art-news/9095836/Edvard-Munchs-The-Scream-to-fetch-80-million-at-auction.html

World Gets Smaller

Amazing, have just found someone who used to work at the same company as me who has a balanced translocation. She had a series of miscarriages before identifying the BT problem. She then went on to have three cycles of IVF with PGD and now she has a baby boy. The world seems to have got a little smaller.

Impact of Baby Loss Poorly Appreciated, Part 2

I've found this blog a very good, and healthy way of venting feelings & emotions that wouldn't otherwise be aired. I thought I'd write about a few of the things that have been bothering me in an effort to exorcise those particular demons. Today's post is about an email I received from a friend, someone I used to work with a few years ago. We live in the same town and got pregnant around the same time, so our babies were due within two weeks of each other and we were looking forward to bringing them up together. But of course, mine died end May 2011, and hers was born 12 weeks later as expected. Here's the email she sent me shortly after he was born.

Hi X,

Not sure if you've been on FB - XXXXX XXXXXX was born last Sunday. It was quite a long and drawn out ordeal getting him out and ended up having an emergency C-section after days of contractions and then forceps but I still couldn't push him out.

Still recovering this end but was all worth it though as he's adorable. Apart from my dark hair hard to tell who he looks like yet as he's changing by the day.

How are you? Has DH gone back to work yet? What are your plans?

No I haven't been on Facebook to see your happy photos of your new, live family. I avoid the dratted thing like the plague. If it's not baby photos ,it's sodding scan pictures.

I think this email clearly highlights how unbelievably unappreciated the impact of having a dead baby is. If my husband had died, do you think this friend, or anyone else for that matter, would be sending me pictures going, 'here's my husband!', 'he took his time proposing, but I got a wedding in the end!' No, of course you wouldn't, because it would be crassly insensitive.

But with babies, especially those who die before term, the same rules evidently do not apply.  I don't think it could have occured to this friend for a minute that I'd be upset to receive news or a photo of her baby. To be honest, when I got that (somehow I knew she would email me and it was an email I was dreading receiving) it would have been quicker and less painful if she'd simply come round and stabbed me in the heart. 

Despite giving birth to one dead baby, let alone your second, it still feels like you are meant to be delighted at everyone else's baby; the concept of grief for your own is just plain bizarre.

Impact of Baby Loss Poorly Appreciated, Part 1

In the same vein as the previous post, I thought I'd list all the other instances where my losses appear to count for nothing. I apologise in advance, as this is typical female-who-can't-let go-brings-stuff-up-ages-after-its-happened.

• We were in a restaurant with my in-laws, my husband, one of my brother in laws and his wife. She was pregnant with what became the Boy Wonder. She and my mother in law COULD NOT stop talking excitedly about the pregnancy. On and on they went. Both of them knew full well that I had lost two pregnancies at that point, but how I might feel about things didn't enter their minds. I couldn't actually concentrate on having a conversation I was so upset. My hands were trembling and I could only just about hold the cutlery. I felt two things 1) that I desperately wanted to vomit in the toilets, 2) like I wanted to walk out into the middle of the street, hoping that there was a suitably large, fast truck coming in my direction. But I sat there being English. When that awful dinner was finally over, I went home and just bawled my eyes out. But what I feel is wrong and I am being unreasonable.
• When my in-laws put pictures up in their house when the Boy Wonder was born. It absolutely broke my heart. Why wasn't it our baby they had pictures of instead? And as time has gone by they have put up pictures of all the other babies that have since been born into the family. I cannot bear to go round there anymore because of those pictures. In fact, when we stayed there for a week in June after our most recent loss (they'd gone on holiday) I took ALL the pictures down. I was SO relieved. :-)
• When Boy Wonder was born and my in-laws started buying all sorts of things for him. My heart kept breaking. Why wasn't it for us? Why did Boy Wonder get to live and be doted on and mine become a pile of ignored and forgotten ashes? Christmas was awful. I had to sit there as present after present was unwrapped for Boy Wonder. I don't think anyone noticed me disappearing to the toilet to cry.
• When it was announced that mother-in-law was now going to babysit him once a week while SIL went back to work. Why why why. I was heartbroken. I wanted to say, please, please don't. Please don't.
• At the wedding of my other brother-in-law, eight weeks after the loss of our third baby. Remember that both my mother-in-law and father-in-law did see this baby. I arrived at the church and saw my mother-in-law and chatted with her. Saint sister-in-law arrived with the Boy Wonder (he was the only baby/child allowed to the wedding) and a welcome party of doting maiden aunts crowded round them. My mother-in-law instantly forgot I was there, turned on her heels crying out 'oh my sweet little boy'. Reader, I am sorry to say, but from that moment I truly hated her.
• Still at the wedding, filing into the church: I overhear sister-in-law point to BW and say 'Look what happened since we got married!!'. I would have quite happily murdered the both of them there and then. But my only weapon was a handbag, which was hardly deadly. So I sat down and tried to keep smiling even though there were tears in my eyes.
• Wedding reception: Out of 10-odd tables, yes, you've guessed it, I'm on the same table with SIL & BW, right in front of them. Sister-in-law CANNOT stop showing him off. He is the only baby allowed at this event, and she is going to milk this to the maximum. I spend as little time possible sat at that table, and when the meal is over, I spend most of the rest of the wedding crying under a tree. I'm not aware of anyone wondering where I am.
• Later at the wedding: I sign the guest book, a record of congratulations for the newly married couple. I flick through the other entries, and come across one signed by my husband's younger cousin and his wife who were also sitting at our table. It's signed from them, their baby daughter and 'peanut'. So she is expecting No2. I twig that everyone in the family must know about this and they are too afraid to tell me. Feel pleased.
• Some weeks later, myself & mother-in-law go out for coffee. We do touch on the subject of my loss and i say I am still seeing the bereavement midwife/counsellor about this (At one stage i was seeing her weekly, I was that bad). She seems genuinely baffled and implies that talking to my friends should be enough. The place we are at is packed with babies and toddlers and I've done my best to zone them out. But she helpfully points out one particularly cute newborn to me. I guess he'd be as old as our baby if he'd been born at term. It's at that point I really realised that she genuinely has no clue as to how much I find that upsetting, or indeed that I would find it upsetting on any level. I should have said there and then that I thought it insensitive, but the moment passes.

Now I wish none of those things had bothered me, but they do. I totally understand if you think I'm being childish and/or bitter, and I'd agree with you. I think the strongest feeling that comes out most from the above is the sheer strength of my jealousy. I wish those events hadn't felt like they were stabbing me in the heart and that I was more grown-up about it, but this isn't how things are panning out.

SIL PG With No2

I couldn't write this before now. But SIL1 (mother of the Boy Wonder) is pregnant with No2. When I was told, my reaction was unprintable, but it's safe to say it involved lots of unladylike expletives & mutilating of voodoo dolls. Why she gets all the luck and we're stuck in this hell I have no idea. It just compounds the hurt.

Article from Independent - impact of miscarriage

Here's a link to a really well-written article on the impact of miscarriage. I can relate so much to her feelings.

http://www.independent.co.uk/life-style/health-and-families/features/miscarriage-the-loneliest-grief-of-all-1516750.html

De Novo

Just found out that I am 'de novo' - in other words, my parents have been tested, and neither of them have a balanced translocation. So I am a one-off. Or as I also put it, I'm like a mutant from X-Men, just without any special powers!

Back to work after 7 months

So, I took the plunge, and now I'm back at work. No phased return, full-time straight away. It's probably a bit unwise, but i'd got to the stage where being at home was doing me more harm than good. In all, it's been a grand total of seven months away. I was lucky, as I was entitled to 10 'keeping in touch' days where I could go into the office without affecting my leave, and it helped build up my confidence, which had largely vanished. And another good thing about being back to work - I'm still very depressed, but that's fine at my workplace at least - come across as happy and they'll think something is wrong with you!

Christmas & New Year - tough to get through

Christmas and New Year have been much harder to get through than I anticipated. My husband and I alternate Christmases with our families, and I was so relieved that this year it's our turn to spend it with my family. There are no babies in our family, while there are now three in my husband's. However, just before Christmas, my mother told me that one of my cousins is pregnant. This came totally out of the blue for me. I don't know why it should be, but it hit me like a ton of bricks. My mother told me as she couldn't bear to tell me herself. She was herself a twin, with a sister who didn't survive the birth. She only found out in her late teens/early 20s when she found some paperwork relating to the fact that she had a sister she knew nothing about. It must have been a massive shock and i think she took it quite badly, unsurprisingly. On Christmas day itself, I said nothing. We didn't talk and I stayed away from her as much as possible. What I was feeling was my very insides twisting with pain. Christmas day was also my birthday. I went to bed feeling utterly wretched. What etiquette is there to negotiate the social interactions of one woman who has given birth to two dead babies and a woman who is happily expecting her first? There is none. I woke up the next morning and sobbed in the bed. I went to bed that night and got up and cried again. It was 2am. I cried again the next day. I guess it didn't help that I overheard my grandmother say how pleased she's going to be a great grandmother at last. That was meant to be my priviledge.