They’re here! OMG. I can’t believe I’m typing this.
Axel and Jaxon, our TTTS survivors, arrived by total surprise on April 26th, 2018. Their due date was July 24! I wanted to write this all down soon after their arrival so I could remember it, and so that hopefully the story of my boys’ survival can give you hope if you’ve just been diagnosed with TTTS (I remember how scary that was).
Here’s how it all happened…
My Twin Birth Story
On Tuesday, April 24th I was 27 weeks exactly. I was first diagnosed with TTTS (Twin to Twin Transfusion Syndrome) during weeks 18-20 and since then was monitored very closely (2-3x a week) at the best women’s hospital in my province, about an hour away.
There were all sorts of tough conversations during the weeks that followed my diagnosis, including having the laser surgery – the gold standard of TTTS care (you can read why that didn’t work out for me here).
So needless to say, after 24 weeks (viability! yay!), every day I stayed pregnant was a good day in my books.
I even began to look forward to my many appointments. I got to see my boys via ultrasound often, the results consistently showed me staying at Stage 1, and I trusted the doctors looking after me.
At 23 weeks, things began to get serious. I needed my first amnioreduction (fluid reduction) to take down the fluid in Baby B’s sac, otherwise my water could break at any time (and extra fluid makes it hard to see things like heart function, etc). In total, I had 3 amnioreductions each spaced 2 weeks apart.
The last one was on Thursday, April 26th.
A Chicken Wrap Sent Me to the ER
So, it was kinda nuts. On Tuesday the 24th, I had my normal ultrasound in the morning and saw my MFM. Other than having a huge amount of fluid around Baby B as usual, nothing was amiss. I was supposed to have an echocardiogram that day as well to look at B’s heart function, since TTTS often causes heart problems for the recipient twin (stages 3-4).
However, they couldn’t see his heart clearly with all the extra amniotic fluid in the way. I had a deepest vertical pocket of 17cm! (Normal is 8cm or under.) EEK.
I already had the amnioreduction scheduled on Thursday, so my doctor decided we’d do that and repeat the echocardiogram right after so they could check out his heart to be sure my TTTS wasn’t advancing.
My body had other plans.
Later that night (Tuesday), I got home after a busy day and was too exhausted to make anything for dinner. My husband picked up McDonald’s for us which normally I’m not a fan of and ate pretty healthy for my pregnancy, but like I said, too tired to cook, so I eagerly ate it.
A few hours later, I had THE worst stomach cramps and pains I’ve ever had in my life. The thought of food poisoning did cross my mind, but with a pregnancy as high-risk as mono-di twins with TTTS, you don’t take any chances.
I called the hospital and they said I should come in, so we packed up and drove in at midnight. I’ll never forget that car ride, which took about 45 minutes. My husband sped there as fast as he could but the hospital I was being seen at was far away. I held onto a rubber bucket the whole trip, crying my eyes out from the severe pain, and I puked 3 times while he was driving on the freeway. My hair was tied back but flyaways kept flipping around in the breeze and getting stuck on my face. Gross.
When we arrived, me with puked-in hair and in my Christmas-hat-wearing-dogs pajama pants, they brought me into Labour & Delivery and started all the usual hospital-ey things: monitors on my belly for the babies, an IV for fluids, blood tests, etc. I was writhing in pain on the bed, unable to stand them even putting the monitors on my belly for long. I ended up puking 2 or 3 more times there too.
They eventually gave me a shot of morphine in the butt cheek to calm down my pain so they could have the monitors on to find the babies’ heartbeats and track them. Dat morphine tho. Wowza that will sure zonk a girl out.
They couldn’t find anything wrong with me, and my cervix was still closed, so it wasn’t actual labour. They deduced it must have been food poisoning from my chicken McWrap. Embarrassing, and gross.
But they decided to keep me overnight to observe because of my high-risk pregnancy, and with the thought that maybe we’d move my amnioreduction up to the following day.
I stayed the night in the inpatient unit I was in for my other two amnioreductions, doped up on morphine still so I could grab a few hours’ sleep.
From Amnioreduction to OR
The next day, my cramps were pretty much gone and I felt much better. And a little foolish for going to the hospital for food poisoning, but you never know! Better safe than sorry.
They weren’t able to reschedule my amnioreduction, so I stayed the next night too. I did find the energy to finally shower that morning (and even shave my legs), something I would become very thankful for later that day. I neglected to wash my pukey hair though due to lack of energy… something I regretted later when I was unable to wash it for another 3 days (ick).
Thursday the 26th arrived and I had my amnioreduction. They drained out 4.5 litres of fluid this time, beating my previous “bests” of 4.2 litres and 2.2 litres (what can I say, I’m competitive).
I was pretty drained (ha – see what I did there) afterwards as it’s not really a painful procedure once you get used to it, but the contractions hurt, and I was tired from the food poisoning situation and not sleeping well in a few days (who can sleep in a hospital really).
Right after they were done draining the fluid, they started checking out the babies via ultrasound for a quick peek at B’s heart. The MFM who did my procedure called in my main MFM who was following my pregnancy, and I saw them both staring at the monitor. They didn’t like the look of B’s heart, they said.
My MFM then spotted fluid in my B’s chest. This indicated my TTTS had progressed from Stage 1 on Tuesday to Stage 4 (the final one before death) on Thursday – under 48 hours. Stage 4 TTTS includes signs of heart failure in one or both twins (usually the recipient first), and fluid in the body, called hydrops. My B had both signs.
My MFM decided that immediate delivery via emergency c-section was needed to save them. If my recipient passed away, my donor twin most likely would too, as the vessels connecting them still existed.
Suddenly, everyone sprung into action. I was taken immediately from the amnioreduction room to the operating room. It all happened in such a blur, I barely remember some things.
The Actual C-Section
From the beginning of my pregnancy, I wanted everything all natural. It seems funny to me now with all the interventions, medications and emergency situations I had along the way.
I never wanted a c-section, even after I found out it was twins. But, when TTTS came into the picture, I knew I wasn’t in control anymore. This disease is so deadly and serious, I would do whatever was needed to ensure my babies survived.
I remember being taken into the OR and I sat down on this stretcher thing. There were nurses everywhere, and the NICU team was standing to the side with two tiny incubators ready for the boys. My husband came in after suiting up in a gown and those hair-covering floppy hat things that remind me of Marge Simpson hair.
I had to hunch over the table and stick my back out for the spinal. It’s pretty hard to do when you’re measuring 46 weeks pregnant! And scared out of your mind, knowing your babies will be born at 27+2 and all the problems that can come with that.
The spinal didn’t hurt at all, just a small needle poke like getting a blood test and it was over. I was told to lay down (quickly before it took effect LOL), and they set up the drape and things. Yep, you’re naked! Surprise. The staff all talked me through what was happening. The weirdest part is the prepping.
Nurses and doctors are all around you and near your lady bits, painting on some yellow goopy stuff on your belly and legs, someone else is down there by your vajayjay, and there was a doctor on each side – the MFM who did my amnioreduction, and my main MFM.
The weirdest part is the bag of ice they use to test if you’re numb yet from the spinal. Like in all of the medical advancements we’ve made, there is no better way to tell if someone is numb than a Ziploc full of ice? I found it funny. They run it up by your shoulders (where you feel it) and slowly down the side of your body until you don’t feel it anymore under your rib cage.
It is such a strange feeling. You swear you’re not numb and that you’ll feel it, but magically after the height of your heart, you really don’t feel anything.
You do feel pressure and a bit of pulling during the actual c-section but it did not hurt. It felt more weird than anything else. My memory is a bit spotty, but I don’t think it took that long either.
I didn’t see them take the boys out, but my husband did. He stood up and looked over the curtain and saw them being taken out of my body. I guess he has a strong stomach.
The boys didn’t cry (Chris says they did but I didn’t hear them) because they were so tiny. The NICU team took them right away to get them intubated and stabilized. Chris went with them which I was glad for, and he even got a few pictures for me.
Them stitching me up or whatever was super weird feeling and lots of pressure. But again, no pain.
I remember laying there still, Chris had gone to see the boys, and my MFM came over to sit next to my head and told me she looked at my placenta and it showed signs of TAPS as well. I forget what else she said, but I plan to ask her about it at my follow-up appointment.
The Twins Arrive!
Axel, our Twin A and donor, arrived at 3:56pm weighing 1.9lbs.
Jaxon, our Twin B and recipient, arrived at 3:57pm weighing 2.9lbs.
Axel came out white as a sheet and Jaxon as red as a tomato, another typical sign of TAPS (but does not always mean that).
After the C-Section
I’m gonna write a whole separate post about c-section recovery and the shit you really need to know, because no one frickin told me a bunch of shit. Honestly, recovery sucked for the first few days.
But, I insisted on seeing my boys as soon as I could. I was still hopped up on the spinal and unable to move, so they wheeled me in my recovery bed all the way to the NICU in another building to see the boys. They were fully inside their incubators by this time, about 1 hour after birth, with lots of wires and things. I remember reaching an arm in to touch each of them lightly and staring at them.
In these photos, I look high… probably was.
They then wheeled me to my hospital room. I remember not sleeping right away. I knew the importance of expressing milk as soon as possible (ideally, within 6 hours of birth) to have a good shot at breastfeeding so I stayed up all night expressing every 2-3 hours. It paid off, as days later, I was filling whole bottles and now have a steady freezer stash ready for when the boys can eat (and I’m still going).
What the Future Holds
Now at 12 days old, the boys are doing well but have some challenges. Jaxon has a severe bilateral grade 4 brain bleed. Axel has a grade 3, but it’s stable for now. We are really hoping both boys pull through 100% healthy, and I’m so grateful for the care they’re receiving right now.
TTTS can be scary, but with a solid MFM team and vigilant monitoring and treatment, your twins CAN survive and THRIVE! Axel and Jaxon are proof of that, my 27 weeker miracles. ❤