The final countdown

We are now DAYS away from the small guy arriving and us becoming parents and it is blowing my mind!  I have definitely been feeling more anxious these past few days than at any other time since the early days of the pregnancy. This is also not helped by practically everyone who crosses my path saying encouraging things like:

You’re never going to sleep again
Life as you know it is over
Enjoy the peace while you can

I remember people also said similar doomsday-style messages of “encouragement” before we were married and they were all complete BS because I really like being married. I do wonder what on earth inspires people to say such negative things dressed up as a joke or a lighthearted comment.  I mean seriously, you’ve been through this before so why are you not being more encouraging and saying what a wonderful new dimension having children brings to life? And – as my Mum says – if you don’t have anything nice to say, don’t say anything at all. I think I really need to walk around with earplugs in for the next few days or else I might have a heavily-pregnant-hormone-induced rage at someone soon.

Yesterday we had our last appointment with our doctor prior to delivery. It was overall unremarkable in a good way – baby looks great, he is still measuring long (tall) and weighing in at 3.2kg / 7 pounds already!! Keep in mind I’m at 37 weeks and 4 days, if baby reached 40 weeks or more he would be really big (as would I be). Eeeek!  The doctor said these measurements are not exact though.  Also, the doctor kept emphasising that his weight was because he is long, not because he’s overly chubby.

The baby has dropped more into a position ready for birth.  He’s not fully engaged in the pelvis yet, but he’s certainly on his way.  This was no surprise to me as I have also noticed the bump sitting lower.  This has positives and negatives… positive because I can now breathe a bit easier (yay) but negatives because if he so much as shifts to one side I feel like I need to pee urgently.

Every time the baby moves these days – and he moves a lot – it is awkwardly uncomfortable.  It’s like he’s shuffling my internal organs!  Also the Braxton Hicks are getting more strong each day and sometimes take a bit of heavy breathing for a few seconds to get through. This has put the fear into me that I could go into labour earlier than my scheduled c-section which would be bad in my situation.

Why bad? As I’ve described previously, as part of my battle against reoccurring miscarriages, it has been discovered that I have an issue with thrombosis – a condition called Antithrombin III deficiency.  Put simply, this means I have a deficiency of a protein that stops blood from clotting and I’m at higher risk of blood clots generally.  There is a theory that if you have this deficiency it can be a high risk factor in causing miscarriage and so the treatment is blood thinners, in my case daily injections of Clexane.

Clexane is routinely used as a blood thinner during IVF transfers as it is believed it may assist with successful implantation of the embryo. The dose that most people are given for this practice is usually 2000mg or 4000mg and only for a few weeks, but I started on 6000mg and am now up to 7000mg – quite a high dose!! I have been taking the daily injection since early November and, apart from it being very expensive and not claimable on insurance – it also means that any kind of surgery needs careful management.

From a pregnancy delivery perspective, and because I’m having a scheduled c-section, I need to be very specific about when I take the Clexane ahead of my surgery. The anaesthetist won’t do an epidural if I have taken the Clexane within about 24-36 hours because there is a risk of the epidural needle striking a blood vessel and causing spinal bleeding which can… well, it can lead to horrible things like paralysis.  These are the things that keep me up at night currently!

Now throw into the mix that if I go into labour naturally:

a) I won’t be allowed to labour naturally due to my previous myomectomy (surgery to remove a fibroid which also involved taking a chunk out of your uterus, thus making the uterine wall thinner and more at risk of uterine abruption during labour)

b) I will need to deliver via c-section ASAP but won’t be allowed to have an epidural if I have taken the Clexane within 24 hours (which I will have as I take them every morning) and will instead have to deliver under a general anaesthetic.

I do not like any of these options!!! So most of my appointment with the doctor yesterday was discussing my options for taking or not taking Clexane.  As the Antithrombin III deficiency was identified by a haematologist and not my ob-gyn, he can’t really over-rule the dosage and also I don’t want him to as the end of pregnancy brings with it the highest  risk of a blood clot generally.  That could be very, very bad for both baby and for me!! We ended up agreeing to speak to the haematologist to see whether I could at least reduce the dose to 4000mg- which would mean an epidural would be possible within 12 hours of the last injection – but she has come back this morning to say absolutely no to that as it would be “very dangerous”.

While very glad everyone has mine and my baby’s welfare in mind during these discussions, hearing the haematologist say stopping/reducing the Clexane dose now would be “very dangerous” did not make me feel at all calmer!  In fact I had a bit of teary moment during my appointment, but the doctor did say my concerns were justified so that made me feel a tiny bit better about the crying. Also the nice ladies at reception were all trying to get me a drink when I came out.  Maybe it’s not good for business when heavily pregnant women come out into the waiting room looking like a mess!  Haha!

So now I am having regular chats to the small guy inside me and encouraging him to stay in there for a few more days until the date of the scheduled c-section.  I am also on the alert for any and all suggestions that labour could be on the way (bleeding, bloody show etc) because in that case I will FOR SURE stop the Clexane!

In between all of that, I also decided yesterday to clean the fridge which I had not expected to be as dirty as it was.  Then I started on the drawer where I keep my cutlery/silverware and that was also more disgusting than I imagined so it got scrubbed out too.  After that the kitchen floor looked like a muddy army had passed through it so I mopped the floor.  That was all in all about 3 hours physical work yesterday and so I was pretty tired after that! The fridge does look spectacular though.  I even took a photo of it! Hahahaha!

The weather is insanely hot still and my feet have gone out in sympathy.  They are not huge but they are definitely a lot more puffy than normal.  I’ve tried elevation, ice baths, light walking and frankly they just stay the same so I think they will until baby arrives.  I’ve decided unless they suddenly go huge (i.e. a sign of pre-eclampsia) that I’m not going to worry about them any more. That’s the benefit of only having days to go as you think, okay I can deal with this if it’s only for a short while!

Antithrombin III deficiency and pregnancy

This post is a bit of an educational one and is perhaps more relevant to the infertility warriors out there than the pregnant mammas.  But keep reading pregnant mammas as maybe you’ll learn something hear that one of your friends might find interesting.

As part of my investigations into possible causes of my multiple miscarriages, I was tested for something called Antithrombin III deficiency.  The results showed that I did in fact have a mild deficiency which, put very simply, means I am more prone to thrombosis or blood clots than the average person.

It is good to be aware of if for no other reason that if ever I am having a major surgery I can let my medical practitioners know to take extra precautions to prevent blood clots forming.

What makes it a particularly big deal for me is that it may have been a contributing factor in my infertility and multiple miscarriages.  It is also a big concern when you are pregnant as a blood clot is generally considered a bad thing for both mother and baby.

I am really happy that I went and saw a haematologist separately to my IVF doctor as haematologists are more specialised in this and I found my IVF doctor was and still is sceptical as to the relevance of antithrombin III deficiency.

The treatment that I have been given to offset the risk of thrombosis has been a daily, self-administered injection of a blood thinning product, in my case it is Clexane.  Many IVF doctors do give a low dose of Clexane as part of the embryo transfer process (you usually start a daily dose a couple of days after your transfer), but in my case I needed a higher dose in order to combat my deficiency.

So yes, I have been jabbing myself every single day with a blood thinner since mid-November last year and I will continue up until the birth and then for six weeks afterwards!  Let’s just say that with the IVF injections and now the Clexane, I am not at all squeamish about giving myself injections anymore.  In fact, I am incredibly efficient about it – it probably takes me less than 2 minutes and that includes unwrapping the injection from it’s packaging.  I am a pro at injections these days!

At about six weeks pregnant my haematologist checked my antithrombin III levels again and found that the dosage of Clexane was sufficient at the time, but she did caution me to come back to be tested again once I’d gained some weight with the pregnancy.  Weight gain and increased blood volume can impact the effectiveness of the dosage.  So back I went to be tested a week ago and I was freaked out to learn on Friday that I need to almost double my dosage of Clexane as I am back into the risky zone for thrombosis.  Eeeeek!

Actually I expected to have my dosage increased as I had noticed I stopped bruising so very easily which I did at the start of my pregnancy.  It was a sign that my blood was not so thin anymore.  I don’t know why, but I felt kind of sad for 24 hours after hearing I had to up my dose.  I think I’d gotten to the point where I felt like all my struggles to conceive and failure to be a “real woman” had started to melt away and this was just a reminder that this pregnancy is a miracle of science as much as anything.

But really it’s fine.  It’s important I do everything in my power to keep baby and me healthy.  So what if my dosage is increased? So what if I have a couple of bruises here and there? This will all be forgotten in the sands of time.

Moral of this story though is that if you too have had multiple miscarriages, especially missed miscarriages like I did, then I suggest you go and also have your antithrombin III levels tested.  It’s a very specialised test and so regular blood clinics might not do it.  It’s also expensive, but it’s probably some of the best money I’ve spent during this whole process.

 

 

Losing my mind

Everyone bangs on about the two week wait, but I have to say that was a piece of cake compared with the past few days of wondering if my little one is going to make it this time. I pride myself on being the kind of person that can handle stuff really well.  I’m successful at work, manage multiple projects and deadlines more or less seamlessly, but this waiting game is BRUTAL!

I know pregnancy hormones are meant to bring out the see-saw hormones anyway, but I don’t even know if I can fully blame them for my current mental state of affairs.  I am just so scared.  So scared of having to go through the same loss/grief process as before and on exactly the same timeframe as last year.  If I wasn’t going through IVF again at this period in time I would still be thinking of everything that’s happened (and not happened) in the past 12 months, but now I am doing that and wondering if it’s going to happen again. It’s like the most messed up deja vu situation possible.

For the past 24 hours I have been full-scale panicking that I’m losing all of my pregnancy symptoms. This is mainly based on having lost my heartburn.  Who would thought anyone would actually be excited to have heartburn?!  I then decided my boobs were smaller than the day before and less sore, but I might have imagined that because they’re still feeling pretty darned sore today!  Tonight I started to wonder if I was imagining feeling nauseous but then I got that weird thing in my mouth where the saliva started overproducing so maybe it was for real. I found me a breadstick and felt much better! 🙂

On the medical front, I had my thyroid tested yesterday and it’s still too high, dammit! It came in at 3.9 and it’s meant to be under 2 during pregnancy.  Ugh. I think this was the trigger for my latest panic as underachieve thyroid is a contributing factor to miscarriage.  I don’t need any help in the miscarriage department so my mind started leaping wildly to conclusions, my heart racing and my fingers typing into Google faster than you thought was humanly possible.

Both my super-awesome haematologist and endocrinologist (both women) are really supportive and have told me it’s a little too high a score than we would like at this time, but it is not really bad either so I am feeling a bit better.  Both of them were all very much of the opinion that staying positive is Very Important, so I am doing my best to listen to the advice.

Hubby has also been reassuring saying I am pregnant until someone tells him otherwise (that someone is not me it seems).  I am almost in total denial that I am pregnant and he asked me how far pregnant I have to get before I’ll acknowledge it.  I suggested maybe when I’m in the delivery suite!  Haha!

So now I have to hang on / endure the days between now and Monday.  And stay positive.

Must.

Stay.

Positive!

Cold feet and warm thoughts

One of the outcomes of IVF treatment that has really floored me is how it changes your perception of yourself. The process is so all-encompassing that it’s almost inevitable that you end up focused solely on the goal of making a baby at the expense of most other things. 

What I’ve learned the hard way – and you really do have to look for the rainbows during the storms – is that there is more to me than my (in)fertility. I have more than once lost sight of my own strengths and value I bring to the world. I’m not claiming to be anything special, but we all have something unique that we contribute that is more than just based on our uteruses. 

Most recently I’ve started to feel sexy again. To be able to look at my body and think yep, that’s not bad! I know that in a few weeks I’m going to be all dosed up on evil, bloating progesterone again (ugh) so for this short period I’m enjoying my sexy. 

The bad side of all this relative freedom is that I’m starting to get cold feet about going ahead with the next transfer. Of course I will still do it but I’m more edgy about it than ever before. 

After 2 missed miscarriages within 5 months of each other and the associated grief, there is a part of me that thinks maybe I’m better off not putting myself through all this again. My husband is more positive about our prospects than me (he always is) but he doesn’t have to be poked, prodded and medicated. 

The reality is that I’m enjoying being and feeling normal. Sure I’d be delighted to have a baby but I’m so terrified of it going badly again I’m asking myself am I doing the right thing?! 

I think I am doing the right thing – there are 15 embryos in the freezer with my DNA in them – but the fear is real!!  I don’t want all that I am to be swalllowed up in the whole ocean of fertility with its infinite depths and dangerous dark patches. Part of me thinks why not just stop this nonsense and just enjoy my life even if that’s without children. 

Am I alone with this thought?!

Always trust your instincts

Today I met up with the rheumatologist doctor who helpfully arranged for me to have approximately 750,000 different immune-related and other types of tests a few weeks ago. As I have Raynaud’s Syndrome which can be an immune-related condition, we have been investigating the possibility that I could be having some immune related issues with keeping embryos alive and growing in my uterus.

I really like my rheumatologist doctor, let’s call him Dr J.  I wish he was actually my full time doctor, but he is a specialist so I only get to hang with him for special stuff.  He went through the extensive (and expensive!!!) test results with hubby and me and tried to play it cool that mainly I’m perfectly okay, but that there are a couple of things I should look into.

What were those things you ask?  Well number one is my thyroid.  Yes, that thing that practically every other IVF doctor in the world tests before starting treatment.  Does my doctor test for this?  No.  I am furious.

Turns out that my thyroid TSH reading comes in at 8.01. Ideally you want to be at 1.0-2.0 for conceiving (normal is 0.2-5.0). This means that I have hypothyroidism. A quick google will show you that hyperthyroidism is a cause of miscarriage.  Oh do you think the IVF doctor might have mentioned that to me after TWO CONSECUTIVE MISCARRIAGES?! No.

Thyroid issues are treatable fairly easily it seems and so off I go next week to chat with an endocrinologist.  The list of doctors on my payroll continues to grow!

Then there is a nice thing called Antithrombin III.  It’s something all about clotting. A normal range is 260-447.  Mine came in at 244 so a little bit low but maybe not super scary low.  In any case Antithrombin III deficiency is another cause of miscarriage.

Finally, there are some things called Complement C3 and C4.  These are also related to immune stuff.  Again, my readings come in below normal suggesting I have a deficiency here.  These are also linked to miscarriage.

Anyone noticing a trend here?

So let’s have a recap of things that could be causing my recurrent miscarriages:

  • Hyperthyroidism
  • Antithrombin III deficiency
  • Low complement C3 and C4 proteins
  • PCOS
  • Surgery on a fibroid 3 years ago
  • My age (37)
  • Bad luck (IVF doctor’s diagnosis)

My BFF who is an expert in all things immune-related and pregnancy has been giving me some great advice about what to challenge the doctors on.  If there’s one thing I have learned for all of this it is to of course listen to your doctor/s but don’t take everything they say at face value.  DO YOUR OWN RESEARCH!!

Good and bad things to say to someone going through IVF

As I am now easing into season 2 of IVF, I’m reflecting on some of the most kind and helpful things people have said to me during this process, and then some of the most unhelpful things. More often than not the annoying and hurtful comments that fall into the “unhelpful” category are not said maliciously, but that does not dilute how bone-jarringly brutal they can be at times.

So what’s a helpful thing to say to someone struggling to have a baby and/or someone who has recently suffered a loss such as miscarriage?

That is really terrible/sh1t/awful for you.  I’m so sorry.

This, or some kind of variation of this is really the only helpful thing that can be said.  I have also taken comfort and gratitude from those especially close to me who have reached out and asked is there anything I can do for you?  Most often there is not beyond hugs and listening to me go on, but just to know they want to help or support or do something is just beautiful. After my first miscarriage, my best friend sent me flowers.  She’s over the other side of the world from me and that small gesture meant so much to me.  It really touched me and helped me in that terrible time to feel like I wasn’t completely alone.

That same friend is also really good at not asking questions (mostly).  She senses when to question and when to just leave me be.  She has 2 children now and I saw her recently when I headed home and got to cuddle her new baby.  She didn’t say a thing when I sobbed as I held her daughter.  She just quietly went and got me a box of tissues. That is a good friend.

So over to the other side; what are some of the things that you should not say:

You just need to relax and not stress so much
Oh really?  Is that ALL IT TAKES?!  So if this all it takes then why don’t teenage sex ed lessons cover this all-important conception detail, FFS! While of course it would be ideal to be going through IVF in some kind of constant zen-like peace, anyone who has been through it knows it is very difficult to remain calm at all times.  Just hearing people telling me to relax makes me stress more.  So don’t.

You need to stay positive
This is closely linked to the above “relax” point, but the kind of people who say it to you are particularly self-righteous about always being positive.  I think it’s fair to say I started off season 1 of IVF very positive and confident it would result in a baby.  Some may say naive.  But you know, two miscarriages in 5 months is tough.  I will not apologise for being fragile and hesitant going into this process again, and someone militantly insisting I remain positive at all times does not have a grasp of my situation and is better off staying silent.

A friend of my friend’s cousin drank this magical tea/took vitamins and now she’s pregnant
Sure she did. Please stop wasting my time with your BS.

You just need to stop trying and it will happen. My cousin/friend/neighbour did IVF for years and then stopped and they fell pregnant straight away
Even if this was true – and I really do think this is the IVF version of a wives’ tale – it’s not helpful when you are pouring everything you’ve got emotionally into IVF (not to mention the tens of thousands of dollars/pounds/euros spent).

You’ll have a baby eventually
Maybe we will (I hope so), but I’ve looked at the stats and done my research and maybe we won’t, so don’t be putting more pressure on me by expecting that its a foregone conclusion.

Oh you’re so lucky you get to go out to restaurants and go on holidays abroad (said by parents)
Yes, you are probably right that this is one of the few perks of being childless and no doubt parents (especially of young children) probably miss this part of their pre-children lives. In fact, whenever we have had a loss one of the first things we go and do is book some kind of holiday. But look deeper.  This is usually because we need to re-set ourselves and get away from all the sadness.  By being so glib about what childless means is patronising and offensive.

I know exactly how you feel!
This is so often said by people who have gone through infertility challenges themselves and have crossed into the other (dreamed of) side of pregnancy and parenthood.  This is especially stinging because you would think such people should know better. One thing I have learned above everything else from this blog forum is that everyone’s story and pain is different and unique.  My story is different from your story even if we are both going through IVF.  My circumstance, background, age, experiences in the past are different from yours and thus my feelings are a kaleidoscope of those experiences, as are yours.  We might each have great insight and be able to share helpful anecdotes or experience – this is beautiful and should be encouraged. However, if you have been fortunate enough to graduate from the title of infertile to that of pregnant or a parent then do not come and tell me you know how I feel.  You don’t know how I feel any more than I know how you do.

Have I missed any really good ones?  Feel free to add your own suggestions in the comments.

And then for a bit of light relief, I highly suggest you go and read this excellent and funny piece on IVF and the Dignity Olympics.

Season 2, Episode 1

So we are back for Season 2 of IVF treatment. I clearly remember coming around from my anaesthesia after my egg removal the first time and swearing I would NEVER do this again. Hmmm… and yet here I am again.

During my first season I was very much the naive novice. Somehow I believed it would all just work out and that would be that.  One round and done. Baby in the home and all the suffering worth it.  Hahahahahaha! Oh how I laugh at my own memories.

So while I do still have a frosty in the freezer, after two missed miscarriages and associated D&Cs in a row (not to mention the enormous grief), I kind of feel like that whole batch was cursed, though I’m not sure “cursed” is yet recognised as an official medical term.

Today I am on day 3 of the down-reg drugs (for me it’s Suprefact) and I will confess I am not finding it as easy as last time.  I think there are several reasons for that, but the main one is that I’ve had a pretty mean summer virus for over a week and I think when you’re feeling lousy to start with, jabbing yourself with a bunch of hormones is really never going to end in you feeling better.

During season 1 of Suprefact the main side-effect I experienced was crazy-intense headaches which I could mainly control by drinking a lake full of water each day.  This time round the headache hit with an intensity that made me frown all day. I’ve also been experiencing random sweats which is so unbelievably gross.  I know these are common but I didn’t get them last time so feel a bit annoyed that they seem to have turned up this time.

To say I am not looking forward to the stims round does not even cover how I really, truly feel about it.  In season 1 I was so unbelievably uncomfortable and stretched by my ovaries growing.  And the annoying thing is that it actually gets worse after they take them out!  Having all this knowledge this time is in some ways a good thing, but in others is a horror.  I know exactly what awaits me and how much I don’t like it!

Last night I even had a cry for about an hour after my jab (which do not even hurt so this is completely irrational) about how I just do not want to be doing this again and how awful it will be to go through it without my kitty baby on my feet every night to keep me company.

That’s right, my cat has not been found.  She went missing on 1 July so I don’t have much hope that she’ll come back anytime soon.  Of course I still have 2 others who are gorgeous and I love them, but she was my favourite and my little shadow.  When all of the bad stuff was going down I could always go home to her and bury my sadness in her furry belly.  Anyway, I hope that someone nice has found her and that she’s living the high life on someone else’s sofa now.

As for all of the bazillion blood tests I’ve done recently it seems that I have high prolactin – which could be attributed to my PCOS or could be a brain tumour (side note: don’t you just love how there are such extremes in all of this? – but the other autoimmune tests showed not very much.  I’m going to see my specialist in a couple of weeks about it, but over the phone he told me that if there were no extenuating circumstances then none of these test results would be a cause for concern.

This is great news obviously as it shows there’s nothing wrong with me, but it doesn’t really explain what’s been going on with my two failed pregnancies.  At this point they best answer I seem to get is that it’s all bad luck.

Yes.  I have had some bad luck and bad things happen to me, but can I really blame everything on the randomness of everyday life.  Let’s hope it was just a cursed batch and that Season 2 brings a positive finale.