It’s a quick update, I know. I’m actually trying to be good and stick to my scheduled blogging times (for now), and I’ve been doing sort of well with it. I’ve done a bit of tweaking, I now have my own domain and am slowly working now towards upgrading and building a bit more stuff around the site. I mean, I NEVER expect to take off and all that, but hey, when your google rankings are not bad, you take advantage of that and make things look pretty. Continue reading The one about the TAPS support group
At the bottom of this post there are links to a fundraiser. All proceeds go directly to the TTTS Support Team so that they can continue their amazing work with grieving families. Thank you in advance for your donations!
On the 20th of January, I turn 40. Crazy, right? I mean, 40 seems like you should have everything sorted out and be a responsible, mature adult and all that shit.
Seriously, no pressure. None at all.
You get so much medical jargon thrown at you when you’re diagnosed with a disease like TTTS and TAPS – and sometimes it’s really hard to process it. There’s a lot of medical terms and it’s quite overwhelming. People start talking about DVP’s and MCA’s and cord flow and start talking about amnios and lasers and SFR … it’s confusing and overwhelming.
For the purpose of this post, I will only be referring to identical twins who share a placenta. There are always exceptions to every rule, but the key to this post is simplicity. So on that note, I am specifically referring the most common denominator – identical twins, sharing a placenta. Continue reading The one about the difference between TTTS and TAPS
Hello again! It’s that time of the year where I campaign relentlessly for TTTS and TAPS awareness. December is a special time of year, where emotions take the better part of me and my passion for spreading awareness increases.
Key Dates for us this month are :
December 1 – the start of TTTS Awareness month. This year I’ve helped with a campaign for the NVOM, a new challenge as this has been testing my Dutch skills!
December 7 – World TTTS Awareness Day. I have a lot of respect for Mary Slaman, who has tirelessly campaigned since 1989 and founded the TTTS Foundation from her own experience with this disease. I would love if everyone who reads my blog would light 2 blue candles on this day to help commemorate the lives of babies lost to both TTTS and TAPS, or wear blue.
December 12 – Celebrating the 4th birthday of 2 incredible little ladies who defied overwhelming odds to be here today. Emmy and Tilly are strong, smart and energetic girls who thanks to amazing research and care, are here with us today. TAPS is the silent killer in the TTTS family – there are no external signs of this disease and can only be suspected on ultrasound. We are so thankful that we had forward thinking doctors and the LUMC on our case.
December 24 – An amazing day for us. On this day, our girls were deemed strong enough to move to our local hospital from Leiden. It’s also Christmas Eve!!
Please, I urge you to make a donation to either your local children’s hospital, or one of the following TTTS charities for Emilie and Mathilde this December. Follow my facebook page for information coming out in both Dutch and English and share!
I hinted a while back that I was working on a story that was a slight deviation from my usual style of writing – and it was published today on Amsterdam Mamas – a website dedicated to parenting in the Netherlands.
The story was my story, intertwined with a fascinating story behind a painting in a castle, not too far from my house. However, the painting is significant to me. Continue reading The one about the Wikkelkinderen…
Warning – this post contains images of placentas. If your stomach isn’t so great, time to move along … 😉
Oddly enough, this post isn’t about my poor, long suffering husband ;).
Over the years, I’ve developed a unique relationship with our research doctor, all based on the tale I told about the girls placenta. (It’s worth the click. Really). I share updates on the girls progress and catch up on the occasion we’re visiting the LUMC. Continue reading The one about the perfect gift …
Today I was published. It’s not the first time (and I hope it’s not the last!) This one was exciting though, because it’s the first time I’ve been ‘international’.
By now you've all probably heard or seen the news that we're having identical twins early next year. Yes, we are extremely happy, no, we don't know what they are yet, and really, we have no preference. Healthy and happy is all we require.
It all started around the beginning of June. Things really didn't feel, well, right. It all began with an overwhelming desire to throw up every 5 minutes and a developing phobia of all things lemon scented. (Seriously, I had to change the toilet cleaner and the dishwashing liquid due to their ability to make me toss my cookies.). So we did what anyone would do … and pee'd on a stick. 5 minutes and 2 pink lines later … Hooray! Positive! We're having a baby.
Things really didn't improve from there. My ability to projectile vomit improved, as well as being able to balance an icecream bucket on my knees on the loo. Food became a distant memory as I barely held onto water and rice cakes. I struggled through my Dutch classes, trying desperately to stay awake and coherant to make the hour long trip by bus to Amsterdam. I decided that by this stage (and by Dutch standards) I should mosey on down to the midwives at the local health centre for advice on what to do next. By this stage, I was convinced I was going to pass out in the street and be swept up by the overzealous street sweepers.
I met the midwives at 7 weeks pregnant, and was immediately whisked up to the hospital for an ultrasound. I tried to call Marius, but he was in a meeting and so the poor man had about 4 missed calls and a half dozen desperate "CALL ME ASAP" sms messages on his phone. He didn't get the message till after, but I was able to give him the news that our little parasite (at this stage, singular parasite – the other was tucked away behind their sibling in a bizarre game of uterine hide and seek) had a heartbeat and everything looked fine. I was then booked in for a 10 week dating scan and another session with the midwives.
I should have had my suspicions up at the 10 week appointment with the midwife. She had a poke and a prod, and measured me, and established 'Well, you're *around* 10 weeks." Looking back – I should have probably sussed that *around* is ambiguous. "Around 10 weeks" means anywhere from 9 weeks to "Whoa. You've got 2 in there!" To top it off, my paranoia was kicking in – having had one miscarriage your sensitivity is high, and my interpretation was 'OMG. Doom and Gloom. It's non viable.'
Luckily I had only a few days to wait till the dating scan. I spent these days miserable, food deprived, nauseous and dwelling on the whole meaning of "Around 10 weeks". By the time the appointment rolled around, I was convinced they would tell me it was a non-viable pregnancy and I would have the whole trauma of loss again. This was to the point where poor Marius ran 10 minutes late to the time we said we would meet at the hospital – and I sobbed on him, then refused to speak to him for the remainder of the wait time. In the mean time, I was pretty much hysterical – and then we got called into the room.
Anyone who tells you that early pregnancy ultrasounds are great is lying. My experience was 'Go behind this curtain, take off your pants and then parade your bare bum across the room to the chair where you put your feet on the steps and spread 'em.' The chosen device of torture is a long, thin wand with a condom like device over it, lubricated with that ice cold gel they use. (Seriously, would it take much to warm that stuff????). It is then inserted into places usually only used for fun … and a grainy image of the baby comes on the screen. The technician probed and prodded for a few minutes (at this stage, I'm convinced that something is wrong!) when she said:
"So, they told you you're having a baby?"
(Me – a look of horror, Marius – somewhat amused). "Yes, that's right."
"Ok, here it is. And here is the other."
"OH MY F***ING GOD ARE YOU S****ING ME?" (sits upright and incurs a magic seeing eye dildo wand internal injury)
(Marius loses it at this stage and laughs at me)
"No, mevrouw, I'm not joking"
I then lost the ability to say any word other than "Twins". Incoherently, I muttered the word over and over whilst the technician explained the change in procedure from that point on. As they established that there was a 95% chance they were identical at that stage, I was suddenly deemed 'High Risk' and was placed under the care of a gynecologist at the hospital. I was placed under the care of one of the resident twins specialists (forever referred to as 'Dr Hottie' due to his rather pleasant looks). At this stage, I still lacked the ability to say anything sensible – Marius was leading me around practically holding me up – when the techician asked me if I needed anything, maybe a drink? I replied that I was sure I wasn't allowed a vodka valium cocktail … and got a strange look.
The next part was keeping it quiet for a few weeks. We decided that we would not tell the world until Marius came back from a scheduled work trip to Asia – and it was getting hard to keep telling people I was 'sick' and that the doctor was looking into it. My ability to eat still was compromised, however as the doctor explained, this was going to cause no harm to the babies as they were parasites, and would take from me what they wanted. (A lifelong habit already started?) 9 kilos of weightloss later, and after making sure family and close friends knew, we announced the news to the rest of the world.
As we now look down the barrel of 16 weeks, the news has slowly kicked in. We're now in the process of doing the renovations we have procrastinated about for 10 months, declaring to the world that these are going to be Primark and Ikea kids … because there's 2 of them, we halved the budget between them, and moaning about the cost of anything to do with twins. I've signed up for as many free things as I can (in true Dutch fashion!) and bemoaned the fact the free baby catalogues only come with one pair of free socks. There should be a box you can tick on the online forms that says 'Yes, I'm having 2/3/4 etc."
Another update soon …
Since I arrived, I've heard a lot of funny stories about people who go to the doctor's here and are merely told to go home, take 2 paracetamol and rest. In fact, I'm pretty sure that if you turned up with bubonic plague, or an axe in your head, you'd be told to take 2 paracetamol and come back if it's not better.
Recently my poor husband went to basketball training and dislocated his index finger by catching a rogue ball. I remember vaguely waking up at around 11pm with him standing by the bed, sporting a plaster cast and telling me 'It's not as bad as it looks …' Of course it's not. IT'S A PLASTER CAST! Slightly a little bit of overkill once I got the story out of him, but still enough to give you that small moment of panic…
Which brings me to last night's story.
My lack of coordination is not news. I've managed to fall over my own feet so many times I now get up, take a bow and laugh. So it should be no surprise to you all that I managed to slip on my stairs (there's a reason the Dutch word for staircase is "trap") but regain my balance. I don't recall doing anything to my foot, but I did notice it was a little uncomfortable when wandering back upstairs to bed.
My feet aren't the prettiest to start with – I'll freely admit that – but when you have to call in your husband to come look because you're not sure of exactly how deformed they are I admit they're probably never going to be modelling matierial. With my foot rapidly swelling and discolouring, he decided I should probably head into the hospital with him and get it checked.
Have I mentioned how hard it is to hobble/hop/limp in snow? That's right, it started snowing as we left the house, so I'm trying to get to the car without falling on my arse or causing myself more damage. By the time we reached the hospital, the snow is bucketing down.
Once inside, it was your standard questions about where you live, health insurance etc. With full marks to the hospital, I was in and out in under half an hour. However, it was confirmed I had broken my little toe. (You don't realise how much you use that little guy until you break it, really!). There wasn't a lot that can be done, but I was sent home strapped, told to rest, and that if I needed to use painkillers, I could take 2 paracetamol.
That's right, Paracetamol.