Negative: The Rest of the Story

At a quarter past six this morning, with pale sunlight working its way around the edges of the blinds and Thomas chattering happily to his trains in his rooms, my heart broke just a little bit more. In my hand was another negative pregnancy test.

If you’ve read the first half of this story, you won’t be at all surprised by that. In fact, you would probably go so far as to wonder why I might have dared to dream that a second pink line would be present, or had even peed on the stick at all. But you see, whilst everything I wrote before was absolutely true, it wasn’t quite the end of the story. I’d hoped – perhaps naively, but definitely stupidly – that I might be able to write a post titled something like “A Miracle Happened Here” and surprise everyone with a pregnancy in a way I’ve long since stopped hoping for.

A miracle so nearly did happen. But this morning, at a quarter past six, I learned that, once again, now is not our time for a happy ending.

The miracle-in-the making was one tiny embryo that came in to existence against all the odds, fertilising later on the same day that I’d received the crushing news that none of my eggs had fertilised. What followed that week is something that deserves a post of its own, but suffice to say it was full of difficult decisions and a moment where I’m sure I caused an embryologist to swear. Against all the odds, our single embryo became a blastocyst, and was transferred back to me.

I knew it was a massive long shot, but it had already come through so much just to be transferred, I thought we might have had a fighter on our hands.

Seeing that blank, stark white space next to the control line was both shocking and completely unsurprising all at once. I got Thomas up, and we went downstairs for breakfast and to pack his nursery bag. Normal life went on.

I only cried when I got in to the shower. I quite like crying in the shower. The hot steam makes my nose and throat feel less thick and the water washes away the evidence of sticky, salty tracks on my cheeks.

My red-rimmed, puffy eyes when I get out are still a dead give away though.

Perhaps it’s really over now.

(Another) Day Out With Thomas

“Thomas did a wee wee. Look Mummy, a wee wee” was the loud phrase, accompanied by manic giggling, that other unsuspecting parents heard reverberating around the engine sheds as Thomas the Tank Engine – the REAL Thomas, of course – discharged his water tanks to the amusement of my son. That he should find that the funniest part of his second visit to meet the train himself seems somehow typical of my comedic little man.

IMG_3161

It was a visit to the “Day Out With Thomas” at our local heritage railway almost exactly a year ago that really stepped up Thomas’s fascination with both Thomas and Friends and all things train related. Being a year older, and still thoroughly obsessed, we decided to take him again. It was interesting to see how much he has changed in than time. He knows so much more about the technical aspects of steam trains, knows almost everything there is to know about the multitude of different characters in the series and talks non-stop of passengers and platforms, whistles and wheeshing. Yet he’s also developed a far greater capacity to be afraid. Gone is the complete fearlessness of a year ago, replaced by a slight caution, a need to check with mummy or daddy that everything is as it should be. Holding back and staying close.

Whilst he was delighted to see so many familiar engines up close, he was also wary of their size and the noises they made. I suppose that’s understandable. He’s used to his friends being small enough to hold in his hand, slip in to his pocket, or share his bed with. (Yes, really. More than a dozen engines are painstakingly audited in their places as part of a pre-bed ritual.) At most, they fill the pages of a book, of the screen of the television. I can’t blame Thomas for being a little bemused to see these huge, more than life-size engines chuffing and huffing around him.

I didn’t take very many photos, and certainly not very many good ones, in part because the light was horrible, in part to allow myself to focus on enjoying rather than capturing, and in part because Thomas wanted so much continual reassurance. Nonetheless he enjoyed his day, which included a ride in “Daisy” to the end of the line. Highlights here included the balloon modelling man, and riding over a level crossing (his current favourite railway feature).

IMG_3177

IMG_3155

 

IMG_3154

Eridge Platform

We saw Thomas, Percy, Diesel and the troublesome trucks shunting in the yard.

IMG_3190

IMG_3183

IMG_3191

He met the fat controller. (And just look how he has grown since last year! Thomas, that is, not the fat controller!)

IMG_3179

IMG_7288
Taken in 2013

He giggled along to a Punch and Judy show, impressing me with his ability to sit and become engrossed in the story, laughing at the jokes.

IMG_3195

IMG_3197

And of course, Thomas being Thomas, he was in heaven to find the model railway tables.

IMG_3204

IMG_3206

Sadly we had to pry him away eventually, since we had another show to get to. But he chattered all the way home about Thomas having a wee. The funny boy that he is.

Acceptance

I find compliments hard to accept. Perhaps it’s typically English to blush furiously whilst brushing them aside with measured self deprecation. Or perhaps this is just one element of social awkwardness that I’ve never quite managed to eschew. Regardless of how truly deserved, or otherwise, I feel the comments are, I’ll always react in the same fashion.

Lately I’ve been on the receiving end of some – to my absolutely certain mind – undeserved words of praise. Anything about being brave, or strong elicits genuine furious head shaking. I’m not any of those kinds of things. Simply because you’ve never faced the unique set of circumstances that life has currently thrown up for me doesn’t mean that you wouldn’t, or couldn’t, handle them with grace and fortitude too, should they arise for you. Perhaps even with more of those two virtuous qualities than I have demonstrated when behind closed doors, in the more private parts of my life. Indeed sometimes, if you could see me there, your words of praise might surely go un-uttered.

The compliment that’s made me stop and think, more than once indecent months, however, is the admiration of my acceptance of our infertility and the situation we’re in.

I can’t deny that’s true. Of course there has been plenty of questioning, plenty of anger and confusion. Last week alone saw many tearful phone calls and a consultation in a plush, private office where I worked my way steadily through almost an entire box of tissues.

But at the end of the day, non-acceptance has to be pretty self-limiting. There is is only so long that you can sit and wail “why me?” and “why has this happened?” Because, quite simply, most often there are no answers to be found. No number of tears, no depth of sadness will ever reverse the situations dished out by the fickle hand of fate. This isn’t the same as losing someone or something precious. It can’t be compared with grief in a traditional sense. In these types of circumstances, far better, surely, to focus energies on the practical solutions. Or possible solutions. Or alternatives. And be very grateful that these exist, of course, for true grief is an abyss of unequalled proportions, with no such practical options.

As I stop to think, I wonder what exactly the people who applaud my acceptance think I would otherwise be doing. Sitting and questioning over and over? Shouting loudly about the unfairness of it all? Sobbing each day and begging an unknown entity to tell me why?

What is the point in any of that? It won’t solve our infertility and it won’t make me feel any better either.

That doesn’t mean I don’t still sometimes wonder why things have happened this way for us. Or feel the familiar stabs of envy at others in the very position I would most like to be myself. Sometimes I feel light-headed with the longing for another child. But there is no logical alternative but to accept the situation as it currently is.

Perhaps it’s a skill I learned in my formative years. I was aged just four when parents sat me down to try to explain the concept of “forever” in relation to diabetes; To tell me that I would always have it. In a conversation that chokes my dad up even now when he recalls it, I asked simply “what, even when I’m a mummy?” They replied in the affirmative, and I said simply “Okay”.

I’m so grateful, to this day that no one ever raised the possibility of a cure with me. Back then it was common to promise that it was just “five years away”. The concept of a cure was totally lost to me though, and I didn’t consider it at all until around the time I went to University. I’m so glad that instead of clinging continuously to what would prove to be false hope, I was forced to accept the realities of life with a demanding chronic condition, always believing it would never go away. I can’t imagine how let down I would feel now, more than thirty years on, had I been promised a cure was imminent.

That’s what I’m also grateful that no one has promised that we’ll definitely have another child. I know that no genuine assurance of that is possible.

At the same time, though, I won’t lie down quietly without at least attempting to shape the outcome.

I can accept that we’re currently infertile. I can accept the possibility that we may not have any more children. But I’ll only work on accepting the actual reality of that if it happens. What I can’t accept is that we’re at the end of the road just yet.

IMG_2795

IVF: No Two Cycles Are the Same

It’s a fact that veteran IVFers happily share: no two cycles are ever the same. But as a relative newbie, only embarking on our second cycle, it’s advice that was easy to ignore. You can rationalise that it refers not to those who have a long gap between cycles, and thus age gets in the way. Or cycles where there have been significant changes in the protocol. It’s easy to get swept up in to thinking that if everything went well first time, and the only changes have been positive additions, then everything should work out very similarly the second time.

I’ve just learned, to my cost, that that isn’t true. It really is the case that no two cycles are the same. The human body just can’t be forced to work like that.

To be fair to myself, I had a bad feeling about this cycle from the beginning. The delays in starting and the disappointing first stimms scan. I regretted not having the cyst drained. I regretted going ahead, to be honest, because I think I may have started stimming too late, which limits the number of follicles still available to be recruited.

But IVF is like a train. Once you’re in, you’re on and though it’s not impossible to stop it, it’s difficult and can be costly. It’s a process with fixed end points and it seems no one likes to take a different track in the middle of the journey.

So egg collection came around last week. We had the usual difficulties with not being able to get a cannula in any of my rubbish veins, and whilst I was definitely given plenty of pain relief, I can’t say it particularly worked. I have a vivd recollection of wanting to jump straight off the bed at one point – not something that is advisable when you have a giant needle sticking in your ovary.

It’s worth it for a good cause, I told myself.

But then, we got just six eggs.

It doesn’t sound too bad on its own, but I was instantly disappointed. Last time, we had twelve.

Half as many eggs. Half the chances. And last time we still failed.

The worst news, however, didn’t come until the following morning. The dreaded “fertilisation report”. It turned out that initially NONE of my eggs had been mature. Maturity is the readiness to be fertilised, and involves the ejection of half the genetic material to leave 23 chromosomes ready to be paired with 23 from the sperm cell. Immature eggs won’t form normal, euploid embryos even if they fertilise. Fortunately two of my eggs went on to mature in the lab, but I was informed they weren’t great eggs and were very tough to inject in the ICSI process.

And then, worst of all, they hadn’t fertilised.

It was the worst possible outcome. Dreams that we might get 5 or 6 embryos again and this time maybe have some to freeze were shattered in a moment. Everything seemed to slow down, become somehow muted and greyed.

Over.

Obviously I was desperately sad and I cried a lot of tears. But I was also angry.

I didn’t, and still don’t fully understand how things could go so wrong after such a good cycle just three months ago. I was concerned that we’d gone from a male factor problem to possibly also having issues with the quality of my eggs. I was angry with the clinic. I blamed them for not draining the cyst. For not using testicular sperm – which had always been the plan, and I thought may have given us a different result – especially as I didn’t learn this until after the event. I felt sure that my medication must have been mismanaged to have so many immature eggs after trigger. I wondered if we’d cycled again too soon – at their suggestion, but one I suddenly felt suspicious could have driven by money. I was angry too about the money. Whilst it didn’t upset me last time, this felt like a huge waste of cash because we didn’t really get our “chance at a chance”.

I realise now, though, that it isn’t really understandable. Medical science is amazing, but nature more so. And whilst we can manipulate it to a degree, there is really only so much control we can exert over all the complicated elements of human reproduction.

If it were easy, the success rates for IVF would be much greater than the average 35%

This journey is hard. It’s unpredictable. Emotionally draining and physically wearing.

All I know right now is that it’s not really over yet.

An Unintentional Hiatus

I’m back.

I know, you probably didn’t notice that I was gone. But last week my blog temporarily vanished and I was left with only a flaky 3G signal to access the internet.

It’s a long and boring story, but to cut it as short as possible, our previous ISP was taken over by a massive corporation who put profits before people (sorry, but it’s true). We wrangled with them for a MAC code to allow us to switch, but in the end they terminated our internet connection without warning simply because we’d made steps to change the phone part of the package. Nice of them.

Because my blog is “self-hosted” in the truest sense – on our own servers – it vanished. And throwing the whole thing, large image files included, up on to someone else’s servers via a 3G service wasn’t really an option I wanted to contemplate.

So I took a break. From blogging. And from being attached to the Internet in general. It probably did me good, although the timing wasn’t great in the midst of our second IVF cycle which threw up some complicated circumstances that sent me running to Medline, and where it would have been handy had Ian been able to work from home.

But in the end it made the switchover less painful – no MAC code or active line takeover required. And it turns out to have been worth it because our new connection is staggeringly fast and confers a host a great features for my geeky husband.

So that’s the explanation for my absence. It’s made me wonder all over again just exactly what we used to do not only before the Internet, but when dial up was the only option since the data connection available to my phone inside our house is awful, and thus about equivalent! While a break may have been good for me, it’s better to be back!

A “Sensacional” Day Out

Today was our second attempt to take Thomas to Sensacional at the Unicorn Theatre. We’re big Unicorn fans. What’s not to love about a theatre catering specifically for young people? We’ve already taken Thomas to two shows there, one of which was mentioned here and the other – Not Now, Bernard, which I still haven’t got around to writing about. (Suffice it to say: it’s currently on tour, if it’s playing near you then GO!) Thomas clearly feels the same, as when we arrived this time and he realised where we were going, he immediately demanded to know “what are we going to see?” whilst jumping up and down.

We had originally booked tickets for Sensacional, based on excellent reviews from last year, for two weeks ago. Sadly, upon arrival we were told that the performer was ill and so the show was cancelled. Luckily we were able to rebook for today’s final performance and despite the fact that it meant we had a double booking (this morning’s adventures coming up in another post) I knew we had to go.

Image source: Unicorn Theatre
Image source: Unicorn Theatre

Sensacional is an interactive performance for toddlers led by a lone dancer using images projected on to a large screen that doubles as a dance floor. Children are invited to dress up in a white suit in order to become part of the show. The huge tubs of clothes presented our first problem, along with the large open space of the performance area, as all Thomas wanted to do (after insisting that his trains also get dressed up, of course) was race around and pull clothes out of the baskets. You can imagine how laundry day goes down in our house! As we wrestled tug-of-war style with strings of white trousers, the projection began.

Then something amazing happened. Thomas really engaged. He engaged with the performer, dancing and following her moves. And he engaged with the visuals. He spun himself around on top of a spinning flower. He followed a caterpillar made of hearts as it snaked across the floor. He chased bugs and alien creatures. He “swam” in a lake chattering away about splishing and splashing and finally pretended to be a duck.

We were captivated by his captivation.

Not only was this more than worth the ten pound ticket charge (for all three of us) I could actually see this being a fantastic regular toddler group activity. It would even offer the opportunity for worn out parents to drink coffee and chatter whilst their offspring were so absorbed – something that doesn’t happen at most toddler groups I’ve attended, where my close attention is required to mediate squabbles over toys and the supply of snacks! Having it as a recurring group would also allow slightly greater direction from the performer, who necessarily in this case was following a set choreography, but possibly at the expense of engaging or inspiring some less willing participants. (That isn’t a criticism at all, it’s just that I can see this concept, harnessed in a slightly different way, being such a massive springboard for growing imaginations.)

The only minor disappointment for me was that the projection was formed of two identical twenty minute halves (no break). Whilst this clearly allows children to pick up on parts they missed the first time,  and probably simplifies production, Thomas realised the second half was a repeat and became much less engaged. Even rotating the visuals by 90 or 180 degrees might have added enough extra interest.

But despite that, he still loved it, and told us himself how much he had enjoyed it.

“That was really fun” he said, with a look of satisfaction.

What more can you ask?!

 

We are not affiliated with the Unicorn Theatre in any way, and purchased our own ticket for this performance. All views and opinions, as always, are mine. And Thomas’s!

More Musings on Diabetes and IVF… and Carbs

I’ve already mentioned that one of the main things I’m doing differently in the IVF cycle is really focusing on my diet. It’s always made sense to me that what I put in to my body has the potential to affect the quality of the eggs that I’m growing. To that end it seemed logical to choose fresh and natural foods in preference to processed ones, and to choose the best quality ingredients available to me. But this cycle, I wanted to think beyond that.

Thanks to type one diabetes, I try to stick to a lower carb diet, since carbs are the macronutrient which has the greatest and most immediate effect on blood sugar levels. Now isn’t the time or place for a dissertation on carbohydrates or my feelings surrounding the recent sensationalism of the so-called “paleo” way of eating, but suffice it to say I’m not interested in labelling the way that I eat, or being particularly evangelical about it. Diabetic since the age of three, I grew up thinking about carbs, and counting them in every meal. I’ve been eating the way that I eat now for more than ten years and I just do what works for me and my health. On a day-to-day basis that means being careful about carbs, but I still indulge in bread, pasta and plenty of cake as and when the time is right. Eating lower carb, however, almost inevitably leads to an increase in the proportion of the diet that is composed of protein and fat. So when I learned before our first IVF cycle that a high protein diet is recommended during the stemming phase, I felt pretty set. I didn’t think specifically about the carbs and I didn’t delve in to it further.

This time I thought I’d check out the evidence for the high protein suggestion that seems to be so widely accepted. A quick Google instantly threw up plenty of results, most of which ultimately led back to a small study, the results of which were presented at the American Congress of Obstetricians and Gynecologists meeting almost exactly a year ago. There are plenty of problems with taking this as gospel. The fact that it is such a small study, with seemingly limited control of confounding factors, and the fact that it has not yet been published in a peer reviewed journal chief amongst them. But the findings are intriguing enough. Especially the specific relationship between low carb diets – less than 40% of calories from carbs – and IVF success rates – jumping up to 80% in this group.

Given that this may well be our last attempt at IVF, I need to feel that I’ve done it right. And suddenly my usual casual attitude to my diet doesn’t seem enough. I feel I need to make minimising carbs an absolute priority because limiting carbs is much less likely to cause a problem than eating them excessively.

I should have left it there. I should have kept my focus that simple and not over-thought it. But me being me, I couldn’t leave it alone. And given that carbs are the subject of discussion, it didn’t take very long until I began stumbling across references to insulin levels and blood sugar levels. And then the fact I’d been trying to avoid hit me in the head.

The conclusion in the popular media is the same one that crops up over and over again when anything to do with carbohydrates is discussed. They apparently cause “soaring blood glucose levels” and it is the blood glucose levels rather than the carbs themselves that are likely to do the damage.

An easy way to annoy a type one diabetic is to talk about food causing “soaring” or “skyrocketing” blood glucose levels in non-diabetics. If you haven’t experienced a blood sugar level of 20mmol/l, you have no idea what “skyrocketing” means. And here’s a hint: if you don’t have diabetes, you haven’t. Blood glucose levels can and do vary in non-diabetics, but by definition, if they get ups above around 6.5-7mmol/l, you’re probably in the club that no one wants to join.

This doesn’t, of course, mean that the assumption that raised blood glucose levels can harm eggs is a bad one. Any female diabetic will know only too well the list of potential complications for an embryo if blood glucose levels are not controlled during early pregnancy. The body doesn’t thrive with too much sugar running around in your blood stream, and it’s clearly not the best environment for creating genetically flawless material. I already know that.

But if the assumption is correct, that higher carb diets are detrimental because of the variations in blood sugar levels in non-diabetics, then what hope do I have? Suddenly this is all about so much more than my diet. Of course I work really bloody hard to keep things as stable as I can. I eat lower carb for precisely this reason – to minimise the swings. But inevitably my blood sugars stray up to the 7 or 8 region more often than in a non-diabetic, and also stray higher than that. And then I have a day like today:

Vibe graph

The red lines are all numbers above 7.8mmol/l. The gap in the graph spans about three and half hours where the sensor was changed over. I wasn’t high that whole time – in fact, I had a fairly epic low. But when I look at the rest of the afternoon, I can’t help but feel that I’ve messed up our chances of this working before we’ve even got to the exciting part.

Rationally I know that people with diabetes get pregnant all the time. They even get pregnant as a result of assisted conception all the time. and they also conceive with less than ideal control and experience no complications. My control was good when we conceived Thomas, but I’m sure I had similar strays in my blood sugars that month. It’s just that it seems like we have so much against us in this. We know that the embryo implanted last time, that I don’t have implantation issues, nor any of the other major leading causes of recurrent miscarriage. So the most likely reason for failure is a genetic one within the embryo.

I just feel as though I can’t possibly do enough. Despite the fact that my conclusions are based purely on assumptions and that the effects of diet are unproven never mind the causation of the effect, I still feel hopeless. Diabetes is a beast that just can’t be tamed all of the time. And I feel as though it has the potential to steal our last chance, no matter what I do.