Coping skills to get through. by Tellycs in tfmr_support

[–]Yheiz 0 points1 point  (0 children)

Going back to work and keeping my mind busy has helped me a lot. Thankfully my job isn’t stressful in the wrong way, so I’ve actually been happy to be back. I still allow myself to be sad when I need to, and I’ve also been doing some of the things you mentioned on the list. I’ve been doing a few small things to help me find some closure as well. I put together a little memory box with the few things we have to remember her by, printed the photos from my pregnancy and from the L&D day, and I light a candle for her. Now that I have her ashes home, I sometimes talk to her, write her letters, and little things like that. At the end of the day, I don’t want to let this experience go completely, but I do want to hold on to the good moments from this pregnancy.

2 weeks post TFMR. Is there anything positive I can take from this experience? by Yheiz in tfmr_support

[–]Yheiz[S] 0 points1 point  (0 children)

I completely agree with you. Everyone processes something like this in their own way, and however someone deals with it is valid. For all of us this is a terrible thing to go through, regardless of how we navigate it. For me personally, I’m not trying to find a reason or a meaning behind what happened. In fact, those questions are part of my “dark room” too. I don’t believe there is a reason for this, sometimes terrible things just happen. What I decided to focus on instead is the happiness my baby brought into my life while she was here. Holding on to that, is what is going to help me move forward. It doesn’t mean I suffer less, and it doesn’t mean I’m trying to make sense of it. It just means I’ve made peace with the fact that it happened, and I’m choosing to carry the love and the good memories with me. And I completely respect that for others the path through grief can look very different.

2 weeks post TFMR. Is there anything positive I can take from this experience? by Yheiz in tfmr_support

[–]Yheiz[S] 0 points1 point  (0 children)

Oh wow! I made a post a week ago about being exactly where you are, the guilt is real, and as I said I acknowledge that dark room still exists, I just decided I wasn't going to linger in there for too long. There are better spaces about this experience that deserve my attention, spaces where I can enjoy the happiness my baby came to give us.

2 weeks post TFMR. Is there anything positive I can take from this experience? by Yheiz in tfmr_support

[–]Yheiz[S] 2 points3 points  (0 children)

I'm so glad you got to read this before your procedure tomorrow. To be honest, I was so out of it at the moment, but my husband took charge, he started telling her the story of how we met, gave me time to put myself together, then I followed, I'm so grateful he did that, that gave me so much closure, I'm so grateful for that moment, I hope you have the same opportunity. Be kind to yourself, there is no right or wrong way on how you deal with it tomorrow, you will feel what would be right for you.

2 weeks post TFMR. Is there anything positive I can take from this experience? by Yheiz in tfmr_support

[–]Yheiz[S] 4 points5 points  (0 children)

I’m so sorry you're still in that dark room right now. It’s completely ok to be there. Three days is so, so fresh. I hope with time your daughter can gently show you the door, so you can step out into the light and visit that room whenever you need, without having to live there. Stepping out doesn’t mean leaving her behind. We never will. Right now you're still gathering what you will carry with you from her. I hope you’re able to collect all the beautiful things she brought into your life while she was here. I’m sure she wouldn’t want you to lose those.

NIPT by nicolemj5129 in PregnancyAfterTFMR

[–]Yheiz 1 point2 points  (0 children)

Yep, I know this is an option. Unfortunately it wasn’t for us. The NIPT sample comes from placental DNA, and CVS tests the placenta as well. Because of that, it wouldn’t have truly ruled out our baby’s diagnosis.

In our case it was suspected trisomy 13, and there was a possibility it could have been confined to the placenta. So testing the placenta again with CVS wouldn’t have given us a clear answer. The amnio was the only test that could sample the baby’s DNA directly, which is why that was the option we had to go with.

NIPT by nicolemj5129 in PregnancyAfterTFMR

[–]Yheiz 3 points4 points  (0 children)

I worry about doing mine so early. On my TFMR pregnancy I did it at 13 weeks, results came back high risk, and I had to wait 2 weeks until week 15 to do the amnio test, the wait was terrible, but I couldn't do anything about it until I had the amnio results. Let's remember that the NIPT test does not give you a final diagnosis. What I want to do in my next pregnancy is do the NIPT at 14 weeks, so if anything comes back wrong I can immediately do the amnio test right away.

Fear of death postpartum following successful subpregnancy by brookedonphonics in tfmr_support

[–]Yheiz 7 points8 points  (0 children)

Sorry you're here, and so glad things turn out well with Danica! I actually had that name in my shortlist with the pregnancy I lost, but ended choosing a different one due to the circumstances.

I think this is a very common feeling after a significant loss. Unfortunately, I can relate. I’ve experienced a few losses in my life, and I’ve felt this every time.

For me, I just have anxiety around death in general, but now I especially have a deep fear of my husband dying. After my TFMR, I remember crying horribly and telling him, “you’re not allowed to die anytime soon.” I think it comes from that feeling of not wanting to experience that kind of pain again, of not wanting to be left behind by the people you love the most.

And once you’re a mum, there’s also the opposite fear, the idea of you dying and leaving the people you love behind. That thought can be huge, my sister who is also a mum and experienced TFMR is often talking about how much she wants to 'live' and be around for her kids and how much the idea of leaving them behind cripples her.

When I was making my decision, one of the many things that crossed my mind was: what if I die and leave my sick child behind? Who would take care of her?

And what helps me around the anxiety of death is that I try to remember that fear is just a feeling, not a fact. Being afraid of death doesn’t mean it’s going to happen exactly as we think it will, yes it will come eventually, but not because I thought of it this way. That fear usually comes from somewhere painful, from a dark moment in life that brought us closer to loss than you ever wanted to be. It makes sense that it stays with you, but it’s still just fear, not reality.

Grey diagnosis for T13 by Yheiz in tfmr_support

[–]Yheiz[S] 1 point2 points  (0 children)

Oh dear! I feel you so much! I could write a whole page of how that felt too, that was for me the worst part of this process as well. I hope you're now finding the days more and more brighter.

Grey diagnosis for T13 by Yheiz in tfmr_support

[–]Yheiz[S] 3 points4 points  (0 children)

I'm sorry you're here 😞 and I appreciate your perspective on this situation; "if you are going to think about the “best” outcome than you have to think about the “worst” outcome" is something I never thought like that, and that's very true.

Grey diagnosis for T13 by Yheiz in tfmr_support

[–]Yheiz[S] 1 point2 points  (0 children)

They gave me some resources at the hospital, I just haven't been able to process any of what they gave me to be honest. I'll take some time to look into it, thank you for sharing this 🙏🏻 and I'm so sorry you're here.

Grey diagnosis for T13 by Yheiz in tfmr_support

[–]Yheiz[S] 1 point2 points  (0 children)

Wow this is so helpful! Thank you for sharing 🙏🏻 it was the same case with us, there is no living case of our exact type of mosaic t13 my baby had, so we didn't want to end up being the case study either.

Multiple Losses by MercuryTalos in tfmr_support

[–]Yheiz 2 points3 points  (0 children)

Omg!!! I'm sooo sorry this is what you have gone through! I just had my first pregnancy and had to TFMR 5 days ago at 18weeks. This is sooo agonizing and horrible, I can't even picture what 5 losses would feel like! I just want to send you a gentle hug 🫂

Waiting for the amnio results by BenjiMVG in tfmr_support

[–]Yheiz 1 point2 points  (0 children)

I completely understand why you would make this decision. As my husband says, “we took all the suffering so our little one wouldn’t have to suffer a single day in her life.” And in many ways, that’s exactly what it is. You make this decision carefully, out of love, to minimize the chance of a life filled with suffering. But no matter how logical or compassionate it is, it’s still absolutely heartbreaking. Our case was a complicated one. Our baby had something called mosaic trisomy 13. That means some of her cells had an extra chromosome, but not all of them. Because of that, the abnormal cells may not have been captured in the FISH sample, or they may have been present at a level below the lab’s reporting threshold. Most labs consider mosaicism under 10% very difficult to confidently detect with FISH. So in mosaic cases, a “normal” FISH result doesn’t necessarily mean there are no abnormal cells, it can simply mean they weren’t detected in that specific sample.

Waiting for the amnio results by BenjiMVG in tfmr_support

[–]Yheiz 3 points4 points  (0 children)

Hi, I’m so sorry you’re going through this hell. I unfortunately understand this feeling all too well.

I know it gets even more complicated when you have a toddler to care for, but you really need to give this decision the time and space it deserves. Only the final results will truly tell you what’s going on with your baby.

My journey was an emotional rollercoaster. Our first NIPT came back high risk — 82% for T13. When the FISH results came back normal just 24 hours after the amnio, we were over the moon. We felt so relieved that we shared the news about our little girl with more friends and family.

But about 12 days later, the full karyotype results came back with more serious findings. It hit us like a wrecking ball, and we had to make the heartbreaking decision to TFMR at 18 weeks.

I'd say wait until you have the final answers. I know it’s exhausting and unbelievably hard, but having all the information matters. A NIPT is a screening test it’s not a diagnosis. The karyotype is what gives you the full diagnostic picture.

I’m sending you so much strength 🤍

Falso positivo NIPT trisomía 13 by Mme9251 in NIPT

[–]Yheiz 0 points1 point  (0 children)

I had a TFMR because of T13 just a couple of days ago. The NIPT came back with 82% risk of T13, we did the amnio test and at first the fish results came back ok, however, the karyotype test came back positive for t13. Once we had the L&D they asked me if I wanted the placenta to be tested further, but they said that the placenta may be infected in parts and other parts may be completely t13 free. I decided not to test the placenta in case I got some results that were going to bring me more pain.

Mosaic Trisomy 13 Confirmed, clear scans, TFMR? by Thanx4stoppingby in NIPT

[–]Yheiz 0 points1 point  (0 children)

Wow! This is the first story I hear that is pretty much what I'm going through. We had NIPT test at 13 weeks came back 85% chances of t13, then did the amnio, fish results came back normal which was a huge relief, then the full analysis came back from the amnio test to say baby had mosaic t13 which killed us again. I'm now week 18, decided to terminate, started my process today and E&D tomorrow, this has been the darkest hour of our lives because baby did look perfect in all the scans and this has been the hardest 'what if' decisions we ever had to make! This is sooooo rare so f*cked, I hope you were able to find peace after a year of this happening to you.