Today was one of those days, full of moments so confronting, I can already feel that they will be etched into my brain forever.
Today was horrible.
Today was heartbreaking.
Today was one of the hardest decisions I’ve ever had to make.
Today I was up at 6:20. By 7 I was bleeding, again. By 8, I was in the car. By 8:10, I’d drunk my designated 500ml of water. By 8:30, we were in the city. By 8:45, I’d cried once from the stress in reception, and they had taken my bloods.
By 9:15 we had seen that gumby is still alive.
By 9:20, we saw Gumby’s hands, and saw Gumby hiccup. By 9:25 we saw Gumby’s brain, and arms and umbilical cord.
By 9:28 the operator was shaking my belly to get Gumby to uncross it’s legs so they could be checked. Gumby responded. Two legs. Cute feet. Gumby was grabbing it’s own ankles. By 9:30 we saw my clot, that I have now christened BASTARD (all caps). By 9:35 Gumby had finally put it’s chin down so the Nuchal measurement could be taken.
It was very reassuring. By 9:40, we were back in reception, with a little framed photo and a cd of images, feeling a lot better.
By 10:15am (this is where I start to lose time) we were in with the counsellor. We were told the scans were excellent. I could hear the but. The nuchal thickness was actually thin. As you can see the nasal bone is really prominent.
And here’s the but. The blood tests told a different story.
The blood test measures PAPAPP-A (Pregnancy associated plasma protein-A) and BhCG (Beta human chorionic gonadotrophin) and compares it to pregnancies at the same gestational age. And mine were all wrong, pointing to downs. She explained some research is going on that says these proteins are not “right” after some cases of IVF. That she really wasn’t sure that the bloods gave a true picture. That the scans were reassuring. The clot is now triple the size, again, at 60ml.
The counsellor talked us through all this before showing us the odds. I was crying at “but”, shortly after she finished talking about the scan. The odds were 1:21. So you put 21 pregnant people in a room, and one of those women is carrying a baby with downs. I’m in that room, right now. The question is, is it me?
Poor hub-in-boots. Stew was holding me, calmly, at least on the outside. And I just lost it. I was hysterical. Seriously. I was wailing, like on our way to the hospital, and like that time part of me was just looking on going “what are you DOING?” but I couldn’t stop the noise. And I couldn’t settle down. It was a horrible noise. The counsellor got me water. She talked us through how they probably wouldn’t do CVS (chorionic Villius sampling, a placental biopsy) as I was bleeding and the pregnancy is unstable, how we’d probably wait for amnio, which can occur at 15 weeks. She asked what was so upsetting. And stew said “the last straw. This is the last straw.”. All I said, repeatedly, was ” I can’t do this. I can’t do anymore.”
We were moved to a “quiet room” to wait to speak to the doctor. He took one look at me, and said, ‘I’ll give you a few more minutes’. He got me a cup of tea.
He was very clear in his analysis. He was very kind, and I instantly liked him and trusted him. He was one of the two our Ob said we could see. He understood my distress, after all the hemorrhaging, to be faced with this. He explained how the clot was pressing against the gestational membrane, and how, in a sense, it needed that contact with the sac to keep it healthy, to keep it from rupturing. He then explained why he felt, even though it sounds counterintuitive, that amnio was wrong for our case. That because amnio actually pierces the sac, it may put more risk on the clot. Whereas CVS could stay completely away from the clot. Nowhere near it. And CVS came with the added peace of mind of action NOW, and answers by Wednesday. Not in 5 weeks time.
Although I’d been thinking I could suck up 3 weeks til a week 15 amnio, he explained he wouldn’t want to do it until 17 weeks at the earliest, to give the clot a chance to heal.
5 more weeks of this? I can do a certain amount to prioritise what is best for the pregnancy. But my own sanity must be balanced against this. And really, today I was at breaking point. All I could think of was how I could organise to be sedated. 24/7, out of my mind. I kept looking out the window, seeing the flag flying and the clouds low on the horizon beyond Darling Harbour, wondering how it could be sunny today, when this terrible news was out in the world. I could not communicate. But I did have the decision tree worked out in advance. I had thought about this. I felt informed about risks. I was glad I had done so much reading.
Hub-in-boots and I talked. Yet again, we both reached the same decision at the same time. I had set out my reasoning yesterday. Gung-ho.
i bounced the situation off my sister on the phone. She, too, had moved from conservative, after the first bleed, to “what the hell” after the fifth. I mean, really, in the face of, at best, 50/50 odds for this pregnancy (without thinking about downs or CVS), what difference does 0.5% extra risk make? Especially if it resolves a significant 1:21 worry. Baby or no baby, I have to live after this. I have to have enough sanity left to survive.
As the doctor explained, if we miscarry, it’s because of that giant clot. Not any decisions we’ve made about procedures. We just have to live with the contradicting intellectual understanding : the clot did it, and the emotional: what if my decision to have CVS caused this? He understood the two were different. He understood this was something we’d have to live with.
Naturally, to complicate matters, I was bleeding like a stuck pig throughout this decision. As I headed for the loos, the doctor asked me not to empty my bladder. Which I forgot about 8 seconds later. But I’d been on the tea and water, so in the end, it didn’t matter.
So maybe an hour later, we decided to go ahead with CVS today. I kept telling myself I could come back later, could do it Wednesday, or Friday, or next week if it helped, to let myself off the hook and not make a stupid decision under pressure. But regardless of theoretical timing, the decision stood. It was clear, and my gut, emotional and intellectual analyses all concurred with those of hub-in-boots. Gung ho.
These procedures are better if you don’t get time to think about them. I was still thinking about our decision when they called me in. I was back on an ultrasound bed. They said they’d treat my skin with betadine, checked all my details, the technician said they’d give me a local then do the procedure.
Yes well, as it turns out, no local ( I don’t think – there was only one needle and a shitload of pain). Gung ho. Probably better to avoid the extra waiting around. He explained what we were doing really clearly. He showed us on the screen where the needle would go. It went nowhere near the baby or the clot.
There was a bright pink or orange outer tube. It was very long. I then decided to do a very detailed inspection of the ceiling. It was one of those panelled jobs, with little dots all over it, and a small rectangular fluoro light. I stared up. I did not look at the needle, or the screen, or the doctor. Hub in boots was rubbing my arm, sitting beside me.
“a sharp sting”
yes it was.
“ok here comes a not very nice pressure”
It was not very nice.
“and this will hurt in your abdomen and deep in your pelvis”
“ooof”. I was back to making involuntary noises, like when I had the Hy Co Sy test. I made another “ooof”. It felt like someone had sliced me from my vagina to my navel, I kid you not. But sharper. Focused. And inside, so unbelievably wrong. Pierced about two inches below my navel. Through the abdominal wall, through the wall of the uterus, into the placenta.
“are you ok?”
I concentrated on not moving a muscle. started off breathing as deeply as I could, looking at that light on the ceiling. Then I worried about moving, and I couldn’t breathe at all.
“You’re doing really well’
“just a bit more pressure”
I was holding my breath.
“Ok do we have a petri dish?”
The ultrasound technician was off and helping, and I stayed on the ceiling. Hub in boots was in my peripheral vision but I stayed inside. Please let them have enough tissue. Please let them have enough tissue. I knew (I’d read) more passes to get the tissue = more risk.
“That’s good. We did well. We’re done. You did really really well. You ok?”
“you can breathe again now. Breathe.”
“we got enough tissue?”
While the doctor bagged and labelled, the ultrasound lady showed us the baby again, the heartbeat. Still ticking.
just like the Hy Co Sy test, I went that funny grey green colour. My lips had no colour.
“Do you feel ok?
“dunno. Might vomit. Might faint.”
I sat a bit. Didn’t feel much better, but decided to move. we paid and paid and paid at reception. I think we’re up to $1700 for today. Ooof.
Hub in boots half carried me to the car. I was very unsteady on my feet. And still green grey. We called by the deli for chicken pie, to find his car, left near the pub since saturday, had a $208 parking fine. Unreal.
It was good to be in bed. I feel all wrong in the abdomen. The bleeding has settled. I am aching in weird places, and tired as I am, I cannot sleep. The counsellor from IVF has skyped with me, and listened, and that helped. The main thing I know is that I am comfortable with our decision. And immensely relieved today is over.
I think often for hub-in-boots, having to be the calm one, the outside observer, he delays his reactions until afterwards, channels it into other things. It is not in his body. But he had to see it, to witness it. Like me, he is exhausted, washed out, drained beyond belief. I think in some ways, I was half prepared for today. For him, I think the impact is yet to come. He was unbelievably supportive.
It is 48 hours until we get preliminary (Fast Array or FISH) results, which does several chromosomes quickly, including 21 and 23. FISH results are pretty accurate. (1:1000 are wrong). We get to find out boy or girl, which even in the face of a miscarriage, I would want to know. It is two weeks until the full analysis is done.
There is no happy conclusion to today. If I try to relate the whole of it to anyone, I come face to face with the fact that we are living a nightmare. Mostly, I deal with one piece at a time. But I am relieved it is over, and hope, for both of us, for easier days to come.