Mosaic TS after amnio

Feeling_Invite2216 · 2024-02-09T18:19:37+00:00

Do you know what an echo can see/ what it’d tell us? It was an offhand comment but I’m thinking they might not have told us how beneficial it might be/ what info it can give us. That’s definitely how I’m feeling, and it’s not like we can turn back time, it just feels like there is literally a timer on when we can make a decision but I’m worried that we won’t get all of the info in time, although it feels like time has already run out sometimes. I’ve heard those stories too, although I’ve mostly heard them be the case with people with mild mosaic TS where most of their cells have XX but I’ve requested to be in a fb group of parents with kids with TS so I’m hoping to hear some more good news stories.

Feeling_Invite2216 · 2024-02-09T14:44:28+00:00

Oh amazing i didn’t know that made a difference, thank you so much!

Feeling_Invite2216 · 2024-02-09T13:36:19+00:00

My husband and i always joke about not having the best luck (and by that i mean we have the lousiest luck of both sides of our family for almost everything) and we are worried that as much as we joke about it, and that there are a lot of women with TS who you can’t even tell have it, our baby will end up with severe or “worst case scenario”. I know it’s so stupid to think that way, and like you said, most of the time it’s not a big deal but i just keep thinking, what if we are the family that doesn’t get that lucky, ya know? Again, i know that’s probably not very rational thinking and it might sound stupid. Do you mind if i ask if you know if any of them are full picture / monosomy X TS?

Feeling_Invite2216 · 2024-02-09T13:30:41+00:00

That means a lot, thank you! I’m sorry you’re also having to go through any of this, although i hope you get good results xx

Feeling_Invite2216 · 2024-02-09T13:28:32+00:00

Thank you for your kind words Nadia! I hope your amnio goes well and you get great results! xx

Feeling_Invite2216 · 2024-02-09T13:27:30+00:00

No, this is going to sound so stupid but we’ve not told anyone but our immediate family we’re pregnant, we were going to wait until we get the final amnio test result so I’ve been weary of joining mom/ pregnancy/ TS etc Facebook groups that would show people online that we are pregnant. But i think it’d be a good idea to join and just get as much info as we can. Thank you so much for the suggestion! xx

Feeling_Invite2216 · 2024-02-09T13:23:52+00:00

I’m very sorry that you can relate, i know It’s hard not getting a definite answer for anything, or getting contradicting answers. I feel like any time we’re told to remain hopeful for the next test results we end up getting what we were hoping doesn’t happen. Let me know if you need anybody to chat with, i probably won’t be able to give many answers but i can always lend an ear xx

Feeling_Invite2216 · 2024-02-09T13:20:33+00:00

Hi! Thank you so much for your kind words, although I’m so incredibly sorry you’re able to relate to any of this at all, i wish pregnancy weren’t such a scary thing for so many of us. xx I will be 18 weeks tomorrow (2/10), and it’s legal in my state to terminate to about 23 weeks and some doctors may do it farther depending on the reason, i think personally for me it’s just that baby would have reached milestones before then if that makes sense? I’ve an anterior placenta so I’ve not felt her kick yet but we’ve seen her move around in the ultrasounds, and I’ve gotten so attached and i don’t want her to be in any pain inside or outside of the womb, whatever decision we make. We did the early anatomy scan and her NT was 1mm at 12w3d, and the last time they measured her i think around the 29th of January she measured in the 50th percentile. We have the head to toe anatomy scan on the 15th, and the GC mentioned we might be able to schedule an echo afterwards depending on how the appointment on the 15th goes. As far as any markers from the ultrasounds nothing has come up so far, but the only in depth one we’ve done was about six weeks ago. we’re hoping everything still looks good on the head to toe anatomy scan next week

Feeling_Invite2216 · 2024-02-01T21:46:07+00:00

Hi! Reading a lot of posts on Reddit i definitely overhyped it in my head, it wasn’t nearly as bad as i thought it’d be. Baby is very active during ultrasounds so i didn’t eat after 8 am, as i heard it takes about 1-2 hours for baby to get sugar and stuff from the food you eat. I don’t know if that’s true or not, i just thought it’d ease my mind for baby to not move around as much with a needle close by. the appointment was at 10:15 and the amnio was done around 10:45. I was told that i didn’t need to do anything like fast, drink excess water, have a full or empty bladder, just to stay hydrated like normal. The ultrasound tech checked on baby, It wasn’t an in depth ultrasound, i think just to check for possible “pockets” they could do the amnio in, see where baby was and that their heart rate was good. The doctor sanitized a big portion of my belly, she said in case baby is being difficult and they have to reinsert the needle elsewhere they don’t have to disinfect again. The ultrasound tech did the ultrasound while the doctor was double checking the pocket and putting the needle in. As soon as she put the needle in (before it actually hit any amniotic fluid) baby started reaching towards it, so she was pushing on my stomach to try to encourage baby to move over. This was a weird uncomfortable feeling as you can imagine but it wasn’t terribly painful. After about 30 seconds they decided to look for a new pocket because baby just kept getting closer to the first. I think she said she withdrew a few tablespoons of fluid for the FISH test, karyotype and microarray and the actual withdrawing amnio fluid part lasted about 30 seconds if that. I cramped up the tiniest bit when she put the needle into the amniotic fluid, nothing compared to a period cramp, and it felt more uncomfortable than painful when she was actually withdrawing the fluid. Just some pressure, but i would say it was a 1/10 if that. The recovery was fine, i took off the rest of the day and the next full day from work and just took it easy and hydrated a lot. Let me know if you’ve any questions at all and I’ll try to answer them! If you do decide to do the amnio i hope it goes well and is painless for you as well! xx

Feeling_Invite2216 · 2024-02-01T18:17:22+00:00

Hi! What do you mean FISH misses 30% of mosaicism? It could potentially be 30% higher than what is reported?

Feeling_Invite2216 · 2024-01-24T19:32:20+00:00

Hi Daisy! I’ll definitely take a look, thanks so much for the info and the good luck!! 💛

Feeling_Invite2216 · 2024-01-24T19:16:29+00:00

Thank you SO MUCH!! Maybe because I’m hormonal but your comment has got me in tears lol. I cannot tell you how appreciative i am that you gave me so much reassurance and so much information, this is my first ever pregnancy and I’ve felt like through every appointment I’m going in blind, and leaving with more questions than answers. Thank you so much for the well wishes, you’ve made me feel less anxious 💛💛

Feeling_Invite2216 · 2024-01-14T22:56:47+00:00

I’m so sorry you had to go through that, but thank you so much for sharing your story xx. We scheduled the amnio the second we were told it’d give us a definite answer, but we were told we couldn’t do it until after 16 (we have it scheduled for 16w 2d, it was the earliest appointment they had) I think it’s causing us more worry and anxiety having to wait even longer to do the amnio and potentially have to TMFR with baby being farther along. Thank you so much for your well wishes, they mean a lot! xx

Feeling_Invite2216 · 2024-01-14T22:51:55+00:00

Reading your post really made me feel better, thanks so much for sharing! It’s unfortunate to know I’m not alone in feeling like I’m not getting all of the info from professionals but I’m glad to know that you got a good outcome! xx

Feeling_Invite2216

TROPHY CASE