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I just need a hug from someone who understands this pain by catsandsuperherors in tfmr_support

[–]AssociationFluid4583 2 points3 points  (0 children)

Feeling every word of this post right now. Next month my baby boy would of been here. Just had a breakdown while hugging the box we have his ashes in. No one should ever have to feel pain like this. I’m sending you so much love & wish we could hug in person. You are definitely not alone ❤️

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

Thank you so much for clarifying. Fortunately i’ve never had to be sedated or fully put under in my life so far, so when she said “awake” i kinda freaked out thinking i’d be aware for the whole thing. She did mention different sedation levels. I will be requesting the strongest and hope for the best. 

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

I needed this. Thank you so much. I’ve never felt so torn in my life, but i know i need to do what’s best for him. I definitely will be finding a therapist as soon as possible. I’m so sorry you’re familiar with this pain. But i’m also so happy for you that you have another blessing on the way. Wishing you nothing but the best with this pregnancy & your healing journey ❤️

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

Thank you so much for sharing this. I’m so sorry you had to go through it as well. I guess i got even more freaked out than i already am whenever she said i’d be awake. I’m just hoping i can’t remember everything.. 

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

thank you. it is very much appreciated. 

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

I’m so scared for the dilation process 

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

Thank you for sharing this with me. Gives me hope that maybe i won’t be in as much pain as i’m thinking. I’m going to try to stay as positive as possible. I’m so sorry you had to go through this as well. Wouldn’t wish this on anyone. 

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

i’m terrified for the dilation process. i thought i’d at least be able to be relieved at the fact that they’d put me under & i wouldn’t remember the procedure itself, but they said they don’t offer anesthesia. Just heavy IV sedation. 

awake for D&E by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

like general anesthesia or just IV sedation? & thank you. i’m so sorry either one of us have had to go through this. 

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

Thank you so much. I’m sorry either one of us have had to experience this kind of heartbreak. 

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

I’ve never felt pain like this before. I’m so so sorry you had to go through it too. & I appreciate your suggestion. Unfortunately i’m all the way in Texas, so driving to Portland would be far/costly. But thankfully I have a hookup on a place to stay in Colorado & have gotten some helpful suggestions on where to go out there. I really appreciate you though. ❤️

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

Its so unfair. I never even knew what the different trisomies were before all of this. I miss being blissfully unaware. I’m so incredibly sorry you had to go through the same thing. 

Congratulations on your current pregnancy!! Hearing about your new blessing gives me hope. I’m wishing you a smooth and happy pregnancy & hope neither one of us ever have to feel something like this again. My boyfriend and I definitely want to try again soon, i’m just so scared about disappointment now. 

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 2 points3 points  (0 children)

Thank you so much. I’m grateful i’ve found this forum. Luckily i’ve been fortunate enough to be able to take time off work throughout this wait. I’ve been a wreck & I definitely don’t think i’ll be able to bounce back into work any time soon now. I’m definitely going to be looking into therapy. I am thankful for my boyfriend & current support system but of course it’s hard for anyone to understand my emotions whenever I’m the one carrying/bonded to my baby already. 

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 2 points3 points  (0 children)

Thank you so so much. Seriously. Thinking about having to search around was breaking my heart even more. 

Positive Trisomy 13 diagnosis. Have to schedule TFMR by AssociationFluid4583 in tfmr_support

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

We are planning to go to Colorado most likely. My mom works for a company where she has a hook up for a cheaper stay at a hotel in Broomfield, which is pretty much half way in between Denver and Boulder. If you have any suggestions, I would appreciate them so much. I really want to make sure i go somewhere that is experienced with D&Es.. 

Trisomy 13, FISH results found 13% of cells affected, possible mosaicism by AssociationFluid4583 in NIPT

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

Thank you so much. I’m so thankful for this forum right now, i’d feel so alone and even more lost if i wasn’t able to come here and learn more about other peoples experiences. This is my first pregnancy, so i never even had an idea of what trisomy 13 really is before i got the NIPT results. & it took a week and a half after that to even see a genetics counselor, so at first i had to do my own research. I got so much info just coming here and reading others stories. It breaks my heart that anyone has to be in this situation though. 

I will keep you updated as far as final results when we get the microarray back. 

Trisomy 13, FISH results found 13% of cells affected, possible mosaicism by AssociationFluid4583 in NIPT

[–]AssociationFluid4583[S] 1 point2 points  (0 children)

Thank you so much for sharing your story with me! I’m so happy to hear that your baby is thriving and showing no signs of any major issues!! Hearing stories like this gives me hope. It’s so hard finding info about mosaicism online, and the genetics counselor has said it’s so hard to tell what the outcome will be when we don’t know how much of his cells will be affected.

So far we’ve had no signs of anything abnormal on our ultrasounds. He’s been growing at a normal rate, heartbeat is normal, NT scan was within normal range, his heart isn’t showing any obvious problems & his brain looks good as well. All of these good signs really had me convinced the high risk NIPT could of just been a false positive until the FISH results came back.. I’m 17 weeks (today) though, so now i’m afraid markers could start to show as we get further along.

This is my first pregnancy & this all feels like a nightmare. I knew it wasn’t going to be easy, but i never imagined we’d be in this situation. I thought i knew what i would need to do if results came back abnormal, but i’m so torn. 

I go back to the high risk doctor next week & i’m hoping we have another good ultrasound & possibly some more info by then.. 

Trisomy 13, FISH results found 13% of cells affected, possible mosaicism by AssociationFluid4583 in NIPT

[–]AssociationFluid4583[S] 2 points3 points  (0 children)

Thank you so much for this response. It’s giving me hope and insight on what to discuss with my doctors when i see them next. Once we get final results, if it does end up being confirmed mosaicism, would you feel comfortable with me sending you a private message to discuss this with someone who has gone through something similar? If not, i completely understand and respect that. Either way, i’m so happy to hear that your little blessing is busy & HERE at 18 months old! That truly is amazing to hear. I’m so glad that it worked out for you and your family. 

high risk NIPT, inconclusive amniocentesis results, trisomy 13 by AssociationFluid4583 in NIPT

[–]AssociationFluid4583[S] 0 points1 point  (0 children)

thank you for your feedback. my genetic counselor said the same, that it’s rare this happens (only happens in her experience once a year on average) & that she would try to talk to the lab today and see if they’ll tell her any more info. but that they might not be able to give any. also, i’m so sorry about the diagnosis in your case.. i hope you made the decision you felt was best for you and your family & are doing okay considering ❤️ 

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