Amnioreduction for Stage 1 TTTS: My Experience
What a rollercoaster week! Less than 72 hours after being admitted for my TTTS laser surgery that didn’t end up happening, I was back in the hospital for an amnioreduction for Stage 1 TTTS!
I went in for my regular follow up appointment on Thursday and ended up getting the reduction (also known as an amnio decompression) the same night. Wow. It was unexpected, but I trust the doctors that it was the best decision.
I decided, why not write about this experience too.
Why I Needed an Amnioreduction for Stage 1 TTTS
So, I didn’t eat much earlier in the day (which I ended up regretting a lot) and rushed to my 1:30pm ultrasound/MFM appointment at the hospital. The appointment went well. We learned both twins continued to have normal doppler readings (read why that’s important with TTTS here), good heart rates and they are even almost exactly the same size, which is fantastic!
They are both measuring about a week ahead of a singleton average baby, which means our boys are big and strong. 😊 That was encouraging to hear for this worried mama.
Anyway, all good news except that Twin B had accumulated 2cms more fluid in the past few days, up to about 14cm. The normal range of amniotic fluid is 2-8cm.
My doctors felt that even though I still wasn’t a candidate for laser surgery, a reduction was needed to keep me from going into preterm labour sometime soon. I was 23 weeks, 2 days at this appointment.
So I was immediately admitted! Of course, the one day I didn’t think I would be and didn’t pack a bag. Luckily my husband came with me that day!
Getting Admitted… Again
We spent a few hours waiting around, getting another IV inserted (damnit that is my LEAST favourite thing in the world!), bloodwork, meeting with various doctors etc. It was the Thursday before a 4 day long weekend (Easter) and no less than 17 women were in the ward in various stages of labour. So that meant I was waiting awhile.
I eventually got moved to a room around 8pm, put on a sweet hospital gown (they’re really not terrible), and just as my husband left for home to pack me an overnight bag, they informed me they would be doing the procedure in about half an hour. FYI we live an hour’s drive from this hospital. Ah!!
I called him to come back and he ended up getting there just in time.
Before the procedure, the doctor talked to us about what we wanted to do if the amnioreduction caused me to go into labour, a rare but documented side effect (happens in about 3% of cases). What that meant was: did we want them to try to save the babies, or not?
It sounds silly. Any parent’s first thought is, “Yes! Of course save them!” but sometimes, that may not be possible, or even the best course of action. Had I gone into labour, they would have been born at 23 weeks 2 days, which is pushing the boundaries of medical science, as it was explained to us.
Simply put: they didn’t have good odds, and if they even survived, a significant risk of severe long-term disability and/or quality of life problems.
It was not a pleasant conversation, but I appreciated all the effort the doctors went to explaining everything to us and giving us the tools to choose what we wanted to do, and the support for any decision we had.
Of course, we did not have to carry through on any of those decisions since I didn’t go into labour. THANKFULLY!
The Amnioreduction Procedure
Around 9:30pm, I was wheeled to the room where they do these procedures, set up and positioned and my husband arrived. Whew.
I was sooooo nervous! I also realized I might have an anxiety problem. The few times I almost fainted or hyperventilated I don’t think had to do with blood pressure, I think it was anxiety. Yikes. I plan to try and work on that in the coming weeks to get it under control.
It’s so hard with an unexpectedly difficult pregnancy to “relax” and “not be anxious” though. Like how do you even?
I was so tense during the whole procedure, every muscle in my body was tight and I was shaking the whole time!
I actually caused myself a lot more pain than necessary by being so tense, but I just could not calm down.
Anyway. Here’s what the procedure is actually like in case you’re curious.
I was laying on my right side on a bed (because they were entering on the left of my abdomen) and had to remain perfectly still the whole time. I was worried about this but honestly it was pretty easy, except for the uncontrollable shaking and my nerves.
One of the doctors pretty much leaned over my belly the whole time to keep it still. The doctor inserting the needle was behind me, and another doctor was in front of me with an ultrasound machine, guiding the other doctor on where to put the needle.
The doctor behind me sanitized my belly and gave me an injection of freezing stuff. All the damn way to my uterine wall!! Holy Moly.
But! You may be relieved to find out this didn’t really hurt. I was surprised because it was a big ass needle. But it was just one little poke, just like getting your blood drawn, so no worries there.
The doctor even said they didn’t need to go in very far because my uterine wall was close to the surface, because I was so thin. It’s always nice to get a compliment in the OR right?!
The doctors waited a minute or two for the freezing to kick in. Then came the big guns. A super long needle that you just shouldn’t look at. Don’t turn your head. DO NOT LOOK AT THE NEEDLE. It is scary as fuck.
Anyway they stick that in and puncture your uterus with it. You feel it a bit, and yes it hurts because like, read the last sentence, but it’s honestly not terrible either.
Then the draining starts. A nurse has the wonderful job of announcing each 250ml of amniotic fluid that gets drained out into a jug, kinda like a gas jerry can. Barf. She also changed over the drain line to a new one when each jug was full (about 600ml).
On the 4th jug, a weird sound happened and everyone panicked and I extra panicked. Turned out to be a defective jug (it wouldn’t seal to have any suction). I started hyperventilating. That was not a great thing to happen for someone with anxiety. They got a new jug and it was fine. In the end I filled up 5 of em, about 2.2 litres of fluid worth.
The worst part of all of this was the contractions. Your uterus doesn’t like being poked and prodded, you see. It tried to eject the needle the way it knows how to eject things: PAIN.
So way worse than the needle pain is your own body’s cramps and contractions which last a few minutes and happen every 5-10 minutes during the hour long procedure. It is truly painful. Because it’s like actual labour. But it’s bearable.
Time seemed to pass very quickly, even though I felt like I was in pain for a long time.
After they were done (around 1am at this point), I continued to have a few more contractions and a lot of pain. I thought the worst, that I was going into real labour, but the doctor thought it was more muscle pain from me being so damn tense the whole time. I was still sore hours later.
After the Amnioreduction
After the procedure is done, they roll you over to your back and attach those heartrate monitor things to your belly to monitor the babies. Both of mine did great, though were difficult to pickup on the machine (moving around too much).
They let you lay there for an hour to recover, and because they want to monitor the babies for that long.
Eventually my pain melted away into just a discomfort and crampy feeling, kind of like you feel on your period. Around 2am, they moved me back to my room to sleep for the night, with instructions to ring the call buzzer if I had any severe pain or bleeding.
I also dropped my chapstick on the floor. Le sigh.
I wrote all this down at the hospital at 3am. Partly so I didn’t forget it and partly as a distraction while my husband goes out to get cheeseburgers – the only food available around here this time of night. I was fasting all day at this point and NEEDED to eat before I went to sleep!
My husband drove to the nearest 24hr A&W and brought me back a Teen Burger and fries. Probably not the best thing to eat before sleeping when I suffer from heartburn too, but I didn’t care right then. (I did care when I woke up around 5am puking.)
My husband also stayed the night on the floor beside my bed on this horribly insufficient cot/pillow thing. He’s tall, over 6ft, and this was sized for someone maybe 5’7″… but, he slept there to be nearby and I really appreciated having him there.
The Day After the Amnioreduction
I didn’t get a good sleep (who does in hospitals?). The next morning, I woke up around 7am and found the energy to brush my teeth and order breakfast. By then, the pain was gone and I was just a bit sore on my left side but nothing crazy.
But I had trouble turning around to eat my breakfast. They put it on the tray behind me and it took me awhile to turn around to eat it. I was frustrated lol
We waited for the doctor to come in to check on me until about 12pm (it was a busy stat holiday so she was very busy). To my surprise, she discharged me (yay), though advised I take it easy from now on to avoid going into preterm labour, always a risk after having your uterus punctured.
Before we left, the doctor did a quick ultrasound to check on the twins, who were both still good. Baby B went from 14cm of fluid down to 10cm! I was hoping for it to be around 8cm, but the doctor said she was happy with this result.
Also, she snapped this hilarious pic for us!
I may need to have one or two more of these procedures before the babies end up arriving…
I am at home now, and allowed to walk around, go to the bathroom, do normal stuff, but nothing strenuous. As soon as I got home on Friday, I grabbed a Tupperware of soup out of the fridge and felt a sharp pain, causing me to drop it and bend over. It was no more than half a pound. That scared me a bit.
Also, the hour long drive back home from the hospital was NOT fun. I got contractions every 5-10 minutes on the drive home from all the bumps in the road, even though my husband tried to drive slowly over them. It was brutal.
I ended up having several more contractions once home, but those have now stopped as of Saturday.
Random Facts About Amnioreductions
Here are a few random facts about the procedure I didn’t know where else to mention:
- The sanitizer or whatever is pink. So my whole belly is Telletubby pink dyed. Cool.
- You get to wear a pair of mesh undies afterward. They are actually very comfy and nice!
- You still have an IV all night. Are hospitals obsessed with IVs or what? Gross.
- The side they did the procedure on will be sore and tender… I am avoiding touching or laying on it.
- They will want to monitor babies’ heart rates for like an hour afterward with these horrible painful straps on your tender belly. It sucks.
- Back in my room, my nurse brought me a heated blanket. Omg amazeballs. ASK FOR A HEATED BLANKET, IT WILL CHANGE YOUR LIFE.
I go back on Tuesday for a follow-up appointment. I’m a bit nervous for the long drive and bumpy roads to get there, but I shall prevail!