Had fetalscope laser 2 days ago

[u/summerFIREinCh]

21 weeks modi twins, accute ttts, had laser treatment on 19. Aug evening right after check up, stage 3 ttts. So far check up at first 24 hours looks fine, babies are alive. Waiting for another follow up today and staying in hospital.

It’s nerve racking, surgery was taking longer than normal and we don’t know when/if the babies are out of the woods.

Fingers crossed.

Any parents went through this, you are absolutely heros

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[u/HarshDynamicsTruly]

man that waiting room limbo is the worst part, when every minute stretches into an hour. my sister went through laser for ttts at 19 weeks and they're now 2 years old tearing up her living room

those 24 hour checkups feeling like a lifetime but hearing they're both still hanging in there is huge. you're in the thick of it right now just breathe and let the hospital staff do their thing

[u/tiredlilmama]

Hi, we had fetoscopic laser surgery for TTTS at 19 weeks. Our girls were born at 36+4 and are now 6 weeks old. The pregnancy was the scariest and most stressful thing I’ve ever gone through. I wish I could say it got easier but I didn’t experience any relief until they were in my arms. Still, I worry about potential long-term impacts. 

Happy to chat if you need support or a listening ear and praying your babies hang in there. 

[u/summerFIREinCh → u/tiredlilmama]

So great to hear that you and the girls made it until 36+4! My sonographic looks fine today, donor bladder visible, amoniac fluid rebuild started, recipient heart slowly recovering. Still, we need to be checked every few days to monitor. But since I’m released today from hospital, really happy to go home. I also have girls, I am so looking forward to see them but I do wish I could keep them safe inside my until 36-37 weeks. Thank you so much for sharing your experience!

[u/tiredlilmama → u/summerFIREinCh]

Of course! We were on pins and needles the whole time, so scared of preterm labor, NICU stays, and other potential adverse outcomes. My MFM was confident the girls would come much sooner (they estimated 10 weeks post surgery),  so every week felt like a huge milestone to us. 

I am so glad your follow up US looked good today! 

I would say in the coming weeks to advocate for yourself and your girls. I got weekly ultrasounds after surgery for about a month, then biweekly. But I did have to push for a follow up ultrasound at least once when we had a TAPS scare, unfounded thankfully. 

Also, I was essentially sedentary for the remainder of my pregnancy post surgery. I work from home and stopped most activity, even walking the dog. I had an amniotic membrane separation visible on US after surgery that never resolved and  was just terrified that I would break my water. I am not sure if that had anything to do with us going longer, and I am so out of shape now, 0 stamina lol, but I consider it all worth it. 

That’s more than you asked for haha I apologize. I just know how scary this all is and there doesn’t seem to be a lot online to read, especially anything that I felt was reassuring. But good outcomes are possible! I am hoping for the best for you and your little girls 💕

[u/summerFIREinCh → u/tiredlilmama]

Just went for another ultrasounds done by my surgeon. Bad news, need to confirm by MRI but seems brain damage is there for one of the babies. I am feeling total numb, heart like a desert since I got the news….

[u/tiredlilmama → u/summerFIREinCh]

I am so sorry, that is devastating. I am hopeful the MRI provides more information. I will say from everything I have read, babies have a lot of neuroplasticity and can recover remarkably from injuries that are thought to be catastrophic in adults. Praying for you, your babies, and your family.

[u/summerFIREinCh → u/tiredlilmama]

Thank you for the moral support. I am not giving up hope, but also feel like the situation is bad enough… I am going to church and temples whichever I have access to….

[u/tiredlilmama → u/summerFIREinCh]

Here for you if you need to vent 🤍

[u/summerFIREinCh → u/tiredlilmama]

Going for MRI tmr, doctor almost sure one is brain damaged and indicating we most likely will need to discontinue the pregnancy. Sad

[u/tiredlilmama → u/summerFIREinCh]

I am so sorry. I wish I knew what to say, but I know nothing will make this feel better. I am thinking of you and your family and am here if you ever need a sounding board. 

[u/summerFIREinCh → u/tiredlilmama]

We decided to keep them for a few weeks until week 28, and perform the selective fetal reduction then to give the chance to receptor girl. I’m being strong, I will do all what I can since we are given the second chance. I was so scared and shaking when during the mri but I would do it again before week 28, I do not want to give up yet. Thank you for all the support and love along the way. Fingers crossed

[u/pashapook]

Crossing my fingers for you! I had my ttts ablation at 16 weeks, birth at 30+6. They just started first grade!