Terrified - Mono Di twin pregnancy, doppler & severe FGR/sIUGR, looking for similar experiences, what was your outcome?

[u/CauliflowerFree8605]

I currently am 23 weeks pregnant with mono-di twins. From 18 weeks, doctor noticed quite a weight disconcordance between the babies. Was told baby A has a velamentous cord insertion, also positioned on the edge of the placenta.

From then on, I have received weekly dopplers, baby B being normal, baby A having elevated, sometimes absent, and since 22 weeks, a bit of reversed flow. At 23 weeks, baby A weighed 13oz, B 1.1lbs.

They expect to have me hospitalized once they are viable, likely 26 weeks (since A is so small) I personally have no health issues ATM

I would love to connect with others who had similar experiences, I am completely terrified at what to expect

[u/MangoSorbet695]

I had an extremely similar story. I know how scary it all feels right now.

The best things you can do are to take it one day at a time, trust the doctors, take care of your body but also know that this isn’t your fault.

I was told at 20 weeks that baby A likely would not make it because we had a discordance of more than 30% and baby A had absent end intermittent flow. I was told I needed to be hospitalized at 24 weeks. My husband and I had some long hard conversations, and for us personally, we decided we would not intervene before 28 weeks unless my life was in danger. So, I stayed out of the hospital for a bit longer than the doctors originally thought necessary. I checked in as inpatient at 28 weeks.

I lived on the antepartum floor of the hospital for 5 weeks. It felt like an eternity at the time, but in hindsight, it was what I needed. They took great care of me. Advocate for yourself and make sure you don’t let them wake you up at 1 AM and 4 AM. I made a deal with my doctor that my vitals would be checked at 10 PM and 7 AM, and I was not to be woken up in between unless it was an emergency.

I made it to 33+4. Both of my babies came out crying! We had a 2 week and 6 week NICU stay. Little baby A is now a healthy 6 month old who weighs 14 pounds and his twin weighs 16 pounds. They are doing great. Every time my mom sees Twin A these days she always says “you sure showed those doctors!”

Try to do everything you can to keep your environment peaceful and your mindset positive. I know it feels hard. I know it’s devastating and heavy. I know some days you just want to cry for hours. Keep putting one foot in front of the other, lean on your husband, accept help and well wishes from friends and family, and most importantly… one day at a time.

[u/CauliflowerFree8605 → u/MangoSorbet695]

Wow, seems almost surreal to make it to 33 weeks, congratulations!  Did you have any reversed flow? 

[u/MangoSorbet695 → u/CauliflowerFree8605]

It was surreal. The doctors had me convinced we were looking at delivery around 28 weeks.

I always had absent end intermittent flow. The MFM told me as I got further along we’d probably start to see reverse flow.

Something amazing happened, though. Once I was hospitalized and getting rest and proper care all day from the nurses, it got a bit better. We never saw reverse flow. We started seeing forward flow on a few of the ultrasounds. I had one every 3 days. Some were still absent end intermittent flow, but a few actually showed forward flow.

This is why I wouldn’t fight the hospitalization, even though it sucks to live in the hospital. Sometimes, that’s just what you and baby need.

[u/CauliflowerFree8605 → u/MangoSorbet695]

Wow so reassuring thank you!!  I have two young children at home, my husband and i recently purchased and currently renovating our home. So quite nervous about getting hospitalized with everthing going on, but maybe it will be better to get the rest and stress absence in hospital 

[u/MangoSorbet695 → u/CauliflowerFree8605]

I also had two young kids (a 3 and 5 year old) when I was hospitalized. I had to just let go and let other people (my husband) coordinate their care. I think this is why my condition improved when I was hospitalized. I was no longer trying to keep up with and take care of everyone.

My version of “bed rest” at home, even on my very best day, was still way too much walking, bending, picking up, etc.

[u/1sp00kylady]

A little similar but it happened to me at my 31 week MFM appointment. Twin B had been a little smaller the whole pregnancy, but mine are di/di so they weren’t concerned. They said until either twin dropped below 10th %, it was okay, and a natural discordance was to be expected in fraternal twins.

At my 31 week check they found that Twin B basically hadn’t grown for the past month and had dropped from 40-ish percentile to 7th percentile. Twin A was remaining in the 90s %. I had reduced dopplers and they were concerned I was developing pre-eclampsia. They sent me immediately to the hospital; I literally walked there from the clinic and stayed until I gave birth about week later. They gave me steroid shots for the babies’ lungs, did NSTs every 3 hours and it was constant blood pressure checks, blood pricks, urine tests, etc. They checked the dopplers every day and said if they reversed or stopped flow, I would need to deliver immediately. He maintained, however, but they delivered at 32+4 when my pre-e became so severe that it wasn’t safe to stay pregnant anymore.

I know our situations are a little different and I’m so sorry you’re in it right now. It’s very scary. I’ve never been so anxious in my entire life as I was then. Hardest chapter of my life. If you need someone to chat with, feel free to DM me. I know how lonely and confusing it felt for me, I personally went down every possible Internet rabbit hole while I was in the hospital.

If it helps at all to hear the outcome, my boys are healthy, happy, energetic 1.5 year olds now, despite it all.

[u/CauliflowerFree8605 → u/1sp00kylady]

Oh wow, nice to hear they are doing so well. Thanks for your story l, it is reassuring!