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NIPT Positive for Trisomy 21: Looking for experiences of others

  1. periwinklebee

    GOLD / pomegranate / 3004 posts

    @yellowbeach: I'm also not coming from the same place, but like @bhbee: wanted to say that it did help once my hcg hit zero. Before that I was just a mess, and my husband really didn't get why I was so sad. I think the hormone drop itself led to some anxiety/depression, on top of the sadness about the loss, but once my hcg hit zero that part got better quickly which helped with my relationship as well. Really hoping things are better for you soon.

  2. periwinklebee

    GOLD / pomegranate / 3004 posts

    duplicate

  3. bhbee

    grapefruit / 4022 posts

    Page refresh?

  4. bhbee

    grapefruit / 4022 posts

    Page refresh again

  5. yellowbeach

    clementine / 833 posts

    Thanks ladies. That’s interesting. Tobhear about how the HcG affected you both. I think I will POAS again tonight to see how low things are. It has me down that it’s still positive knowing that’s a big hurdle we need to over come.

    Additionally, a good friend just found out on her 20 week scan that her baby has agenesis of both kidneys and won’t survive once born. She’s pursuing TFMR as I type. I am so sad for her, and perhaps it’s a bit of a trigger for me.

  6. periwinklebee

    GOLD / pomegranate / 3004 posts

    @yellowbeach: I'm so sorry for your friend - and for the difficult memories it brings back for you. Sending lots of healing thoughts for both of you

  7. karenbme

    cherry / 247 posts

    @yellowbeach: I'm so sorry you're going through this. There are no words for how awful what you're going through is (you're friend as well). Today is my first time back on HB in a couple of months, or I would have jumped in sooner.

    Like others have said, with both of my losses it's gotten easier after HCG hit 0. Still hard, but more in control of the emotion rather than feeling like there were times when it was ruling me, if that makes sense. The only advice I can give is to distract yourself as much as you can. I'm glad you were able to go away, and while I'm sure there were tough moments, young nieces and nephews are definitely a trigger for me, it sounds like it was a healing thing for your family.

    And I just want to say how sorry I am about the ignorance/insensitivity of the medical providers. It sounds like you've had a rough go of it throughout. I know it's not the same, but I had to fight with a scheduler the other day to get him to schedule me a pap because, "they would have done that at the first appointment for your pregnancy in May." Which is to say you're not alone and I know it makes things so much harder.

    I hope you have good luck with your PGS. Having a plan and a path forward can be so reassuring.

  8. yellowbeach

    clementine / 833 posts

    @karenbme: Thanks - I've been thinking of you as well.

    Lots of cramps tonight, hopefully that means AF is on her way... cautiously optimistic.

  9. LabradorLover

    apricot / 425 posts

    @yellowbeach: keeping my fingers crossed for you! Probably the only time we wished for AF!

  10. yellowbeach

    clementine / 833 posts

    You guys... DD#1 took her first steps today at 16.5 months - this is a big deal after our delivery at 32 weeks, 34 day NICU stay, intracranial hemorrhage resulting in hydrocephalus and a VP shunt which caused motor asymmetry and delays requiring weekly PT >6 months now.

    And... we get our PGS results tomorrow...

  11. crazydoglady

    persimmon / 1292 posts

    @yellowbeach: This is incredible! Way to go, baby girl!

  12. LabradorLover

    apricot / 425 posts

    @yellowbeach: That is great news!! I can't wait to hear your PGS results!!

  13. Shantuck

    persimmon / 1442 posts

    @yellowbeach: Yay! Hopefully this is a sign that your luck is changing!

  14. 2PeasinaPod

    pomelo / 5520 posts

    @yellowbeach: Awesome news about DD! And hoping your PGS results come back with good news.

    I also wanted to chime in to say that it might be helpful to speak with a therapist. Though no where near what you're going through, I was pregnant 6 times and have 2 beautiful sons. I miscarried the other 4, and it took a major toll on me. DH and I became closer than ever, but I became an anxious mess. I knew it at the time, but didn't know what to do about it. It finally culminated once LO2 was around 10 months. I was still having horrific dreams about losing my family in terrible ways, and I sought out therapy. It was the best thing I ever did for myself.

    Just remember to be kind to yourself and cry when you need to. Those who haven't been in your situation will try to offer advice and sympathy, but it will come across as insensitive. I never felt more alone than I did the months after each miscarriage. I actually taught myself to crochet during that time to get my mind off of everything. It still helps me to relieve my anxiety today.

    Please keep us posted and let us know if you need to talk!

  15. periwinklebee

    GOLD / pomegranate / 3004 posts

    @yellowbeach: So happy to hear about your daughter, and keeping my fingers crossed for the pgs results

  16. yellowbeach

    clementine / 833 posts

    Just got our PGS results

    6 normal embryos
    1 with extra chromosome 15
    1 with 46 xy with 2 duplicates
    1 with deletion on 15

    I'm pretty elated considering we were expecting only 4 or 5 normal. This is great news!

  17. LabradorLover

    apricot / 425 posts

    @yellowbeach: THIS IS TERRIFIC!!! Now bring on AF already!!

  18. Sams Mom

    GOLD / pear / 1673 posts

    @yellowbeach: First and foremost, congrats on having more genetically normal ones than you expected!

    Also I have a question if you don't mind answering. This has always been a question for me, but I've never known anyone that has been through IVF.

    Do you find out the gender with PGS? and if so do people (not necessarily you) choose embryos for transfer based on gender?

  19. yellowbeach

    clementine / 833 posts

    @Sams Mom: That's a great question. In the US, yes you can find out gender with PGS. We asked for it to be displayed on our overall report, but when we go to do a transfer, we don't want the embryologist to use gender in selecting which one to transfer - just to look at the healthiest one with the best chance of pregnancy. Once we get a we'll probably ask to know which one they transferred and what the gender is, just because we've never been and probably never will be Team Green. From talking to our RE, it sounds like more people choose not to select based on gender and just pick based on quality (like us).

  20. Sams Mom

    GOLD / pear / 1673 posts

    @yellowbeach: interesting. Quality over gender definitely makes sense with how much a transfer can cost somebody. So aside from knowing they're chromosomally normal, they rank them on a scale? to know which one is best?

    thanks for answering

  21. yellowbeach

    clementine / 833 posts

    @Sams Mom: After you do any egg retrieval and IVF, they do what's called "embryo grading" before they go into you or into the freezer. This is done whether or not you plan to do PGS. So everyone that does IVF gets their embryos graded, and then those who do PGS get an extra layer of information.

    https://www.arcfertility.com/understanding-embryo-grading-c/

  22. Sams Mom

    GOLD / pear / 1673 posts

    @yellowbeach: thanks for the link all very interesting to read up on ahead of time if we ever go down the IVF road.

  23. MamaBear87

    pear / 1667 posts

    @yellowbeach: yay! Such good news!!

  24. MamaBear87

    pear / 1667 posts

    @Sams Mom: my cousin had surro twins and they did pgs and knew gender after they were transfered but they also had them chosen based on the best quality embryos

  25. yellowbeach

    clementine / 833 posts

    @Sams Mom: I also kept a daily diary when we did our first round of IVF. One of these days I might get the courage to publish it publicly, but in the mean time if you want to read it to get a sense of what to expect, I'm happy to send it to you.

  26. 2PeasinaPod

    pomelo / 5520 posts

    @yellowbeach: Great news on your PGS results! Congratulations!

  27. periwinklebee

    GOLD / pomegranate / 3004 posts

    @yellowbeach: So happy to hear this - congrats!!!

  28. Katrocap

    persimmon / 1217 posts

    @yellowbeach: I'm so excited for you both about your little girl's first steps and your PGS results!!!

  29. yellowbeach

    clementine / 833 posts

    Making no headway really towards HCG leaving, so going in for an US Thursday of next week with my RE to ensure there's no retained POC. Tomorrow marks 6 weeks since my TFMR.



  30. yellowbeach

    clementine / 833 posts

    US did show retained POC. Now another TWW, but of a different kind, as I'm apparently ovulating right now based on the US and blood work, despite having a positive bHCG. In a best case scenario, I'll cyle and get AF around 14 days from now and then be able to start tracking ovulation for a frozen embryo transfer. Worst case scenario, I wait and wait and nothing happens, and then go for another US just to see still retained POC, and have to have a D&C. Feeling glad to have some answers of why AF hadn't come after 6 weeks, but more waiting. Ugh.

  31. Katrocap

    persimmon / 1217 posts

    @yellowbeach: I'm sorry you have to wait - yet again, but glad you have a better understanding of why there's been no AF and a plan for what to do next. I'm still waiting for the call from the genetic counselor with the results of the CVS. I'm trying to be calm, but have little hope for good news.

  32. yellowbeach

    clementine / 833 posts

    @Katrocap: How many more days? Ugh the waiting.

  33. bhbee

    grapefruit / 4022 posts

    @yellowbeach: ugh I’m sorry. I did ovulate before AF after my d&c, when my hcg was still positive (no idea of actual number) - hoping that resolves it for you. I know the waiting must be awful.

  34. Katrocap

    persimmon / 1217 posts

    @yellowbeach: Monday will officially be two weeks. Ugh the waiting, indeed!

  35. yellowbeach

    clementine / 833 posts

    Well I feel like at age 40 I should have a good handle on what AF looks like, but I swear it’s hard to tell. Since my TFMR I’ve had all kinds of random spotting ranging from pink to orange even.

    Based on the US last week, we know I have retained POC. And we also saw on the US and based on blood work that I was ovulating. So you’d expect AF a week from today (2 weeks from the Us). But here I am today with some pink spotting yesterday and today continuous brighter red spotting. I have my normal AF cramps and bloating along with it, so I went ahead and sent a message to my RE to let him know. I’m going to feel like an idiot if this is a false alarm and isn’t really AF.

  36. bhbee

    grapefruit / 4022 posts

    @yellowbeach: I think it’s pretty normal after a d&c to have a weird period or two - some stop and start - etc. Hopefully this is it and you can move to next steps!

  37. LabradorLover

    apricot / 425 posts

    @yellowbeach: I hope this is it for you! I immediately got excited when I saw this board had more comments and was hoping you would be having AF. For what its worth, my doctor told me that I could spot/bleed randomly or nothing at all until AF ultimately came, and when she did, it would/should be a normal period. But I am still holding out hope for you that this is it!

  38. yellowbeach

    clementine / 833 posts

    My doctor wrote back and I have an appointment scheduled for 1:30 tomorrow. Holding out hope this is AF.

  39. Katrocap

    persimmon / 1217 posts

    @yellowbeach: Fingers crossed for your appointment tomorrow. Who could imagine you'd ever want AF so badly?

  40. LabradorLover

    apricot / 425 posts

    @yellowbeach: I hope it is, too! Keep us updated!

    @Katrocap: it is funny how much we hate AF but at the right time, we can’t wait for her arrival. I always say “now that you are here, I need you to leave again ASAP!” Haha hope you get your results soon!

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