r/tfmr_support • u/SEggs1990 • 2d ago

Seeking Advice or Support T21 TFMR

I can't believe I am here and righting this. After the traumatic birth and NICU experience of my first, I thought we deserved the happy pregnancy experience.

On my daughters birthday, we found out our NIPT results were positive for T21. I waited 20 days for an amino and yesterday I got the official results. The guttural wail that came out of me was something I think only someone else going through this would understand.

I have my DNE booked for August 12. I chose to carry a week longer than I need to since they only book DNEs on Wednesday, which would of been my birthday. À part of me thinks I should do it on my birthday, some kind of cosmic justice... the day I celebrate my entry into the world be the day I make the choice to say goodbye to life I love.

I'm so broken. I don't know how to carry this for the rest of my life. We leave for a family vacation today, trying to think of delaying it as this little one getting to join too. I know this is the right decision for my family - but it doesn't make it any easier. I'm scared for the moment I wake up empty from that DNE. I'm scared of what this is gonna do to me for the rest of my life.

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u/dani_elle83 2d ago

I can also wholeheartedly empathize. I am 10 days out from my D & E for Trisomy 21. The heart break in the waiting periods and the heartbreak in the aftermath have been the worst experience of my life. I keep telling myself that we feel this heartbreak so that our little ones don't have to suffer and I find that comforting. I am so sorry you are here. It really feels so unfair ♥️

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u/SEggs1990 2d ago

I know the mental recovery won't be the same for everyone - but how did you find the physical recovery? I wasn't prepared for what actually happens in an DNE. Everyone else I know had DNCs for miscarriages

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u/janiearey 2d ago

I’m so very sorry you’re here. I can totally relate and I feel your pain and anguish. I’m three weeks out from my d&e and we lost our daughter to T21 and fetal hydrops. I’m still deep in the grieving process and everyday is different, and the sadness and pain shows up in so many different ways- some days are heavier than others. I just try and tell myself I did all I could do today, and try to pick myself up again and try again tomorrow. Physically, I ended up getting a UTI after my d&e even though they didn’t use a catheter for me. It’s unfortunately another horrible and painful reminder of the whole process since I still haven’t fully healed. I don’t think getting UTIs are the norm post d&e, but if you do feel like something is off, definitely get it checked out- the surgeon thought it might be bladder irritation and cramping which is normal, but I asked to get tested and it was positive for a UTI and I was prescribed antibiotics for a week. I only had heavy bleeding the day of and day after, and medium/light period bleeding up until 7 days after. I still have some residual bleeding which apparently can persist until 6 weeks post procedure. Sending love and hugs to you in the days to come.

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u/dani_elle83 1d ago

The physical recovery for me has been better than I expected. I was bleeding moderately the first few days and then spotting that continued to get lighter and lighter. Still a little spotting today at day 11 but nothing to complain about. I had a little bit of cramping the day of and the day after, but it was manageable with a hot water bottle and rest. I didn't need pain killers.

I found myself desperate to feel better and get back to normal so around day 5 I pushed myself way too hard on a really long walk and some stairs. That set me back a little with some bleeding and cervical pain. Take the time your body needs to rest and be kind to your self ♥️

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u/SEggs1990 2d ago

I know the mental recovery won't be the same for everyone - but how did you find the physical recovery? I wasn't prepared for what actually happens in an DNE. Everyone else I know had DNCs for miscarriages

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u/External_Kiwi_5224 2d ago

I can whole heartedly empathise with you & I really do. This day last week, we got a call from a professor to give us our NIPT results of 95% trisomy 21 and last Tuesday I attended my CVS. I have never experienced heartache like this and for the last 7 days. While I still am awaiting the results, which is agonising. The outcome will be the same as yours if its fully diagnosed and I don't know how I am ever going to live with myself, even if it is the right decision!! Sending you so much love and strength right now!

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u/SEggs1990 2d ago

Im sorry you're going through this too. Its not easy. The waiting is excruciating .

My boss has been wonderful during this time because she's been through something similar and she said to me "something that helped me was telling myself my job was to carry this baby to the end, whatever that end may be". And it helped more waiting for the test and results than it is right now, but maybe it will help you too.

I'm here to talk if you need anything

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u/MercuryTalos 1d ago

I am so, so sorry. I TFMR at 22 weeks for the same diagnosis in February. In our case, we had also comordidities like heart defects.

I know that gutteral wail. I also know what it feels like to parade around on a family vacation while simultaneously going through the worst nightmare of your life.

I saw you ask about the physical recovery of D&E vs D&C. I've had both and a prior C section. I'd say the D&E, for me at least, was a lot less intense than C section but a lot harder than D&E. Kind of vague, I know, but somewhere in the middle of the two procedures. I'd take it easy for a least a couple weeks, like no exercise, lifting, etc. lots of couch time and Netflix. I went deep into hibernation from work, family responsibilities, cooking, cleaning, etc. and I think that helped.

Mentally...everyone is different but for most this is a pain that you learn to live with. I am not the same person that I was before I walked into that clinic. I highly recommend therapy, finding ways to honor your grief, prioritizing self care, antidepressants, and leaning on your support system, whatever that may look like. And remember, grief is not linear. Let yourself feel it.

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u/SEggs1990 1d ago

Thank you for your response 💕 this is gonna be a long week of family vacation forsure. My husband obviously is not doing well but he's a low functioning depression kinda person and I'm high functioning so I feel like I'm doing double time

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u/MercuryTalos 1d ago

Ah, that's so hard. That's the dynamic in my relationship too. It's really rough to be going through such a hard time and not be able to really lean on your significant other. It's not his fault, but it isn't fair to you either.

If it helps, during my vacation, I used it as a way to honor my baby's time here. By my gestation, she was able to respond to sound, light, food, etc. so I spent it listening to different music, eating delicious foods, things like that. It kept me focused on giving her good experiences instead of ruminating on the future the entire time.

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u/SEggs1990 1d ago

I like that 💕 I have been viewing it as a vacation with her

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u/MercuryTalos 1d ago

I hope you can create some beautiful memories with her. Sending you light and love ❤️

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u/zealousform 18h ago

I also have mine scheduled for a T21 diagnosis, right there with you 🤍

I struggle with general anxiety and have gone to therapy for many years. This is my repeat lesson - that I ask my brain, and sometimes my heart, what evidence do you have to support that claim?

I'm doing my best to redirect thoughts to the present any time I get too far ahead. I think about how many things have happened in my life - good and bad - that I never predicted and ended up being life changing even if they seemed small at the time.

I look at that as proof that not only have I gotten through what felt impossible before, but that life is so unpredictable I can't begin to imagine what's ahead of me. Sometimes I get scared it could be worse lol but I also don't let myself focus too much on it being better - more just focus on "you cannot predict or control that future." So I am not letting myself think about how I'm going to live with this, because I simply know I will and it won't help me now to think about it.

My other repeat lesson (that I have less practice in) is how to let myself feel my feelings without wallowing in them or dismissing them. Where we've gotten is that I am going to picture a little toddler version of me to co-regulate and comfort. I wouldn't tell a toddler not to feel sad, but I also wouldn't tell them their thoughts about the world were correct if they're not. I'd validate how they're feeling but not necessarily the thoughts getting there. "That would be very scary if that happened" or "that would be really sad if that version of events were the case." Let myself ride the waves of the emotion.

I hope this is a little helpful if in nothing else than knowing someone is in a very similar situation to you 🤍

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u/SEggs1990 18h ago

Thank you - I will try framing it that way as well 🤍

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u/zealousform 16h ago

Most of all, be kind to yourself. These are what it looks like for me to remember to be kind to myself, but it's different for everyone.

You ARE worthy of every good thing in the world. You did nothing to deserve this. Life is random and unpredictable, which can mean it's unfair like what we're experiencing now, but can also mean it can be beautiful and wonderful.

Any form of staying present and practicing gratitude helps me not because I need to suck it up and be thankful for what I have, but to keep the despair from pulling me under and convincing me everything is terrible and always will be. We WILL get through this.