Monday, January 19, 2009

sooo long without an update.

I think anyone reading will have deduced the sad facts....Angelyn Marjorie (we changed her name from Marge) was born on 10 July 2008. She made it to 24 weeks. Unlike her brother, she lived, for 30 minutes.

Just like her brother, she was so beautiful.

Words have mostly escaped me, hence the long gap. But my paintbrush has not.

You can find where I have been on

Tuesday, May 27, 2008

Holding it all together #2 At Home Again

After I had been in hospital for a week, Pineapple's father picked her up from school, and let her know the good news that Mummy was already out of hospital, and even better, at home.

Rather that skipping off delightedly, to get back as soon as possible as expected, she stopped and asked him gravely:

'Oh. Has the baby died then?'

We had spent a long time explaining to her that the doctors had operated, and if all was ok after a week I would be able to come home. But obviously we had not explained enough. After all, the last time I was in hospital for a week, the death of a baby had been her experience too.

I am home, but not out of the woods. I am on strict bed rest, sofa rest, house arrest. This involves simply choosing a side to lie on, and occasionally swapping sides. I can get up to move about a little, to use toilet and bathroom for example. Stairs are to be avoided. Its a daunting proposition, not just for me but for everyone who lives with me. I have at least three more months of it. But, I would rather be at home than at hospital, and I am completely delighted to have even been given this challenge at all.

During the operation they found that things were worse than they thought, hence the week for observation. That I did not lose the baby immediately was a good sign, and this continued for the week. Although it was all so frightening because it was so similar to your loss, I have consoled myself by noticing all the points that were different, and reminding myself constantly of those. But I cannot deny its been tough.

Pineapple told her Dad that she had something to say to the baby when she got in.

It was lovely to see her, and for the first time in a week, not from my hospital bed. She rushed over and hugged my stomach, and whispered to it:

'I love you, Marge.'

Saturday, May 24, 2008

Mummy, isn't it true that.....

'Mummy, isn't it true that six babies have died in your tummy?'

Pineapple asked while visiting me in hospital this afternoon, delighted to be with her big sis, who is over from England.

Big Sis gasped, her eyes wide open.

A few weeks before you were born, Matt, and before we realised the sadness that would come in the next few weeks, we thought the challenge would be to help Pineapple adjust to not being an 'only child' after you arrived. Having a Big Sis who visits and spoils her is lovely, but not the same as a full-time baby. We let her know that she was very loved, and that we had waited a long time for her, that there had even been a few babies that had not made it - just to emphasise she was special. If I kick myself now for telling her, I have to remind myself that she heard this story anyway in the consulting room a few weeks later. It has stuck with her, but today was the first time I have heard her do the maths.

'Yes, but it wasn't six, it was five sweetie, and some were very little' .

I don't think their size in anyway diminishes the losses, I was just looking to take out some of the sting. For me, for everyone.

'But I was.... I was ok! .... I think its because I didn't move much' she pondered.

'Oh you moved plenty - especially your mouth' her Dad said.

Pineapple was notable for 'talking' through all her scans. The technology of scanning allows such an early insight into the soul being carried, at least in my sample of one. This child has a lot to say.

'Yes - you managed it, you were ok, that was really clever!' I said and shook her hand. We had a laugh. But I do share her trouble in understanding this all.

Thankfully, with perfect timing, a midwife popped in to listen to the baby's heartbeat. We all listened together. Baby is just fine.

Big sis said the beat of the heart and the interference sounded like the intro to a dance track she liked - 'Two Receivers' by the Klaxons. I listened later and agreed.

It was a sweet moment, and I hope so much it will be a better memory for both of them. These two do not need any more exposure to the impact of babyloss. For them, I pray for some better experiences and associations.

Wednesday, May 21, 2008

A reason

So, I think we finally know how, and why, we lost you, Matt. Its long, so bear with me.

I mentioned that before Pineapple was born, we had a bad time. We were investigated for recurrent miscarriages, after Hoshi, Sitara, Astra and Star. It was devastating, and hard to understand what the doctors meant when we were told it was 'good news' that no cause could be found. What they meant was, it was just very 'bad luck'. We had a very good chance of having a baby, and Pineapple proved them right.

What I suspect now, is a subtle twist. If we were 'unlucky' to have all those miscarriages, we are certainly so lucky to have Pineapple. And I mean, at all.

After three of the four miscarriages I was admitted to hospital for d+c's. In turn, Pineapple's own birth was legendarily quick for a first birth.

At your autopsy, the results were ambiguous. Either there had been a weakness in the cervix which caused premature labour, and also allowed in infection, or infection caused the cervix to open prematurely leading to premature delivery. Because we had Pineapple, the first theory was largely discounted. She too, the argument went, would have suffered the same fate if it was down to a weak cervix.

However, as there was no certainty I would be monitored for both (susceptibility to infection and a weak cervix) in any subsequent pregnancy. Again, as before, your loss was down to 'bad luck'.

It was hard to swallow. Not just because my glass is half full, but just calculating the odds had my head reeling.

Just how unlucky are we talking here?

Well, depends how you calculate it, but for 4 miscarriages in a row that could be 1:160,000.

For those plus a mid trimester loss that could be 1:40,000,000. Very high odds. But I have met other similar unfortunate women in chatrooms. Its unusual but I am defintely not alone...

I started doing the lottery after the early miscarriages to allow some good luck for a change, after all this talk of 'bad luck'. I still do it now.

Later, pregnant again and in front of the French gynae, the reaction was similar, if less equivocal. It was almost certainly infection. A sad one-off. But they would still monitor me for changes in the cervix, and only put in a stitch if absolutely necessary. They were definitely not keen on a preemptive stitch due to known side effects - miscarriage and chance of infection.

I had wanted one all the same. Having been exposed once was enough, and I would take the risk. However I was satisfied after I adjusted to the change in nuance - they key would be in the monitoring.

By by 15 weeks, to the obvious surprise of the doc, the cervix was showing signs of weakness. I was operated on at 16 weeks, and it had already started to open, labour was starting.

A very close call. And I can't yet use the past tense.

I am still in hospital now for monitoring, at 17 weeks. The fear is that the operation itself could cause premature labour, or introduce infection. This is so horribly familiar. But it is not the same, and for everybody's sanity I have to remember that.

Back to the recurrent miscarriages. While there is not much risk associated with d+c, three or more can give an increased risk of a weak cervix in 12% of cases. But the key to me has always been Pineapple's sudden appearance on the scene. I have long mused that although her birth seemed quick, that was just the part we were actually aware of. Labour may well have started earlier while we were having dinner with friends. Silently, painlessly.

So for you, and for this little one, labour also started silently and painlessly, but so sadly, too early in the gestation. Perhaps Pineapple's speedy birth further weakened the neck of the womb. Whatever - it IS possible to have a weak cervix and to have previously delivered at term, to all the experts apparent surprise.

It does not lessen the pain, but I feel strangely at peace that we know more of the story. Bizarrely that peace is even despite the current threat to this pregnancy. But that's what a pregnancy is like after a loss: one foot in the past, grieving and trying to understand, one foot tentatively daring to hope for something different.

In time I will also rage at the heavens and shout at the mountains that your loss was so meaningless. All because of elective surgery, following a suite of miscarriages which, in turn were just down to 'bad luck'.

How twisted is that? I cannot even begin to imagine what I am going to make of that, when I come off this cloud.

But I do not really believe in 'bad luck'.

Not to that degree. It should be recognised for what it is: a lack of complete knowledge and not enough research. No doubt in 100 years people will look back and wonder that we went through so much due to our technological ignorance.

In the meantime, though, I will still do the lottery.

Tuesday, May 20, 2008

Holding it all together # 1

One of Pineapple's teachers at the afterschool club took her father aside last week, wanting to know a bit more about her broad collection of imaginary friends.
'There is one, she has mentioned, a brother who has angel wings who flies about - is he real?'.

'Yes, he's real'.

'She said something about a baby dying in her mum's tummy, and she was crying'

The image of the angel is new, and is Pineapple's own.

We have been talking quietly these past few weeks, and she must have picked it up.

Pregnant again, we have decided to leave it for as long as possible before telling her. We have been attempting to protect her from too much further anxiety. As if we can stop her from seeing ours! With an enquiring little mind around of course, not saying anything can have other results.

It should be good news, thrilling news, but when you have had a stillborn child, the joy and excitement of pregnancy is stolen from you. It must be the same when you lose a sibling.

Pineapple has been at the afterschool club, because we have needed the extra time. It' s been so great to have it, and they are very flexible. Even better, she loves it and begs to go. A routine scan at 15 weeks has picked up that I risk going into early labour again. We have had hospital apointments, and now I am being admitted for a stitch, literally, to try and hold this pregnancy together.

Thursday, May 15, 2008

Do you think Matt ever knew he had a sister?

“Do you think Matt ever knew he had a sister? A big sister, like me?“ Pineapple asked yesterday.

She is very excited and proud that in 16 days she will be five-and-a-half. Because her birthday is so close to Christmas we always thought we would make a little something of the halfway mark for her. This year, as her birthday fell around your due date, it was hard. We made sure she had a great time, but still, not an easy celebration. So the half year mark has perhaps become more important to me too. The countdown to the date has been fun.

“Well, I am sure he heard you. He would have known your voice.”

She seemed to like that idea, and smiled at the thought.

Hoshi, Sitara, Astra and Star. We gave these names (all meaning star) to the four other babies that were not born. They all were miscarried one after another when they were really tiny, even before Pineapple was born. We thought star was a great name for this foursome, as perhaps miscarried babies become stars. We called you Matt, by the way, as you were a complete gift to us, and you came and went, out of the blue.

Hoshi, Sitara, Astra, Star and Matt: if you can, please look after the little unborn one, 16 weeks tomorrow. And of course, please watch out for your sister Pineapple, who is now so nearly five-and-a-half. Sometimes I am amazed that she managed to be born at all – but so thankful.

Monday, May 5, 2008

Thank you Matt!


today is my birthday, another beautiful blue sky day in the Alps. We have a good day planned. I miss you as ever, and think back to this time last year. It would just dawn on us in a couple of days time that you were coming along. What a cliche, but really, what a year!

And I have something else to tell you.

I believe you would have been generous and warm-hearted, from my dream of you, so can trust you to take this the right way in time: I am now carrying another little one. The pregnancy that is nurturing her is 14 weeks old.
When I found out about her at first, it felt good, peaceful, calm. It was as if a void had been filled, with what ought to be there. But I must apologise to both of you two, born and unborn: that feeling did not last long at all - and it seems as if I have spent every waking moment since grieving you Matt. Thinking of you, missing you.

Congratulations on the new pregnancy, although well meant, felt surreal. In anycase it was all so unfair on you. I am in good company apparently, as this is a predictable reaction in a subsequent pregnancy, according to every piece of research out there I have read. It is still an unexpected reaction until you think about it, so it is as well to be prepared for it: we may not have not seen the last of it. Its made me think about parents of twins where one sadly dies at birth: how to celebrate a birthday of a loved child, when you are grieving for the one you lost at the same time? It must be so hard, so conflicting. And all this, and she has not even remotely got to the point where she can be be born yet. We have still all got a lot to get through.

She? Well I don't know for sure, and I am quite happy to be wrong: all we can hope for is a safe arrival of whoever is on their way. But at this point I can remember so clearly how it felt to be carrying you, and this is very different. Or I should say, you were so very different, and at times it was a unique experience for me. I was changed by you. I benefited from having you.

I remember one incident, and you were also just 14 weeks. I remember how it felt as if it were yesterday - not because of what was going on but because of how differently I was reacting to a minor, petty difficulty.

I was in a new kid on the block at work, and a colleague was attempting to bully and manipulate me to pick up the pieces of a bad hand long-previously dealt: a large dose of known legacy problems, and who knows what other hidden skeletons in the closet. Just standard bad behaviour at work. I had an inkling it was a minefield from the urgency but not quite how far the unexploded bombs stretched, and the full explosive power. Clearly this person felt unfairly treated historically. (Most probably they had a case. I have good reason to suspect there was of unfairness, but that's very much for another time). In any case horsetrading with a disgruntled colleague just to keep the peace seemed futile, even if I did have to see them daily. You see, normally that alone would have influenced me. But for maybe the first time in my life, I felt the resolution of conflict to be incredibly simple. I refused calmly; reversed the question and asked why it would be for me to deal with? I could see there was a problem, but I too had my own job to get on with and needling me was not going to get me to agree to concessions I did not really understand. Without you, before you, I would have probably gone round the houses, tying myself in knots, trying to see it from their point of view, suggesting ways things could be changed, looking in vain for a hopeless compromise.

But I did not like the approach, and so, simply did not have to buy it.

It may be a complete load of rubbish, but I have read somewhere that at around weeks 14 of pregnancy, if it is a boy, then there can be surge of testosterone. If that's what it was, it certainly felt different; not dramatic just uncomplicated but powerful. I was fascinated by the easy assertiveness that came. Is that what it I would have been like as a male? Perhaps quite different then! A small incident but one that taught me so much. I no longer have that phantom supply of testosterone (or whatever it really was), but I do remember how easy it was to stand my ground coolly. Having felt it once I am sure it will be possible to recreate the mood if necessary.

So...on my birthday, I would like to thank you for this present, and what was a unique insight!