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NIPT Positive for Trisomy 21: Looking for experiences of others

  1. Mrs. Pajamas

    apricot / 476 posts

    @yellowbeach: I'm so so sorry to hear this news and the ordeal you have already been through. Wishing you love and strength for tomorrow and the healing process.

  2. Mrs. Toad

    clementine / 798 posts

    I'm so sorry. I'll be thinking of you and hoping it goes as smoothly as possible.

  3. mediagirl

    hostess / wonderful persimmon / 25255 posts

    Thinking of you and your family today, @yellowbeach.

  4. yellowbeach

    kiwi / 669 posts

    I’m in the recovery room and am doing just fine. Procedure was very peaceful and short and involved good medications (still on board my system so forgive typos). Physician was very personable. A pleasant experience considering. Next step later today is to tell the people we care about that we lost this baby.

  5. youboots

    honeydew / 7398 posts

    @yellowbeach:

  6. MamaBear87

    pear / 1541 posts

    @yellowbeach:

  7. LindsayInNY

    coconut / 8981 posts

    @yellowbeach: Thinking of you and your family. ♥

  8. LabradorLover

    apricot / 411 posts

    @yellowbeach: thinking of you and glad to hear it went well under the circumstances

  9. yellowbeach

    kiwi / 669 posts

    @Beehive @LabradorLover: I think one or both of you mentioned feeling a sense of relief after, and that the time prior to TFMR was much more painful. I'm already feeling a sense of peace that this was the right decision. Thank you both for sharing your stories.

    And thanks to everyone on this thread for the continuous support. Next steps for us...

    Today: relax

    Tomorrow: work in Triage in the ED, let's hope for a sleepy Sunday where people want to BBQ rather than come get an expensive pregnancy test

    Friday: leave for Florence, Italy for 10 days to see my sister and my 3 nieces. They were very excited about the prospect of a new baby cousin, so that could be hard.

    June 17: Celebrating my 40th birthday and DH's 2nd Father's day

    After Italy: Meeting with our RE to discuss getting PGC on our eggs and when we might be able to proceed with a frozen embryo transfer

    Other than that, just going to keep putting one foot in front of the other.

  10. LabradorLover

    apricot / 411 posts

    @yellowbeach: I feel/felt guilty saying that I had relief right away but it was totally true, as you now know. I had been dealing with it for 6 weeks leading up to the termination and I can tell you a weight was lifted off of my shoulders after I got home from the procedure.

    I hope you enjoy your trip, because you deserve it! Being around your family might be helpful right now. Take care of yourself and DH, and of course, your little.

  11. starchild

    cherry / 232 posts

    I'm so sorry.

  12. bhbee

    pomegranate / 3947 posts

    @yellowbeach: just all the

  13. ElbieKay

    nectarine / 2935 posts

    @yellowbeach: I have been following your thread but had not found the right words to reply. I saw your comment about turning 40, and it resonated with me. I was in the middle of my third miscarriage during my 40th birthday last year. My RE would not perform a D&C
    while there was still a heartbeat, and I could not get an appointment on short notice with their referral who would. So I spent my 40th birthday waiting for the fetus to die. Then two weeks later my MIL, who had just had serious surgery, made Mother's Day all about her when I just wanted to stay home with my nuclear family.

    They analyzed the tissue and concluded that the baby had Trisomy 6. If it had been another trisomy disorder that is compatible with life, I think we would have made the same decision as you. It just would have been later in the pregnancy, with the pressure to decide rather than letting nature take its course. Obviously that is more challenging but ultimately the outcome is the same.

    It is a year later, I am currently 29 weeks pregnant (with twins! I am terrified!!), and we made everyone visit us for Mother's Day this year and my husband made a lovely brunch from scratch. My life feels like it is in the completely opposite place versus this time last year, to the point where it feels surreal.

    It sounds like you have a great plan to move forward, and I agree that the best perspective is that you will have to take things one step at a time.

    I will keep you in my thoughts, and I hope that you find peace with whatever next steps your family decides to take.

  14. thepaperbutterfly

    olive / 50 posts

    I was so sad to see that the CVS confirmed down syndrome I was really hoping everything was going to be okay. . . I'm glad you've started to find peace in such a terrible situation. Sending more *hugs*

  15. thepicklemonster

    cherry / 229 posts

    @yellowbeach: I’m so sorry for your loss. I hope your trip to Italy provides at least somewhat of a distraction. Sending lots of love your way.

  16. yellowbeach

    kiwi / 669 posts

    Ugh so I’m at work and the first ten minutes I was here 3 babies have been born upstairs - which I know because they set off a lullaby chime every time a baby is born. I used to love that sound. It would give me peace after telling someone they had cancer or that their loved one had died - it reminded me that life wasn’t all bad. But today it feels like a dagger to the heart. Most days I love my job, but today is not one of them.

  17. FaithFertility

    eggplant / 11829 posts

    @yellowbeach: I Just caught up and I am so sorry! Prayers for peace, comfort and strength!
    No.words!

  18. winniebee

    hostess / wonderful grape / 20802 posts

    @yellowbeach: I'm so so sorry. I just walled you the information for the support group that I'm part of.

  19. snowjewelz

    wonderful kiwi / 23154 posts

    @yellowbeach: I am so sorry I hope your upcoming trip away from home and with family can help heal We are here also

  20. Mrs. Pajamas

    apricot / 476 posts

    @yellowbeach: that's got to be so hard. Just try to think about how someday in the future you'll feel excited again hearing that chime when you're pregnant again. But for now it's hard and it's ok to hate that chime. I've totally been there.

  21. crazydoglady

    persimmon / 1121 posts

    @yellowbeach: Hugs, mama. I, too, believe that days of joy are ahead.

  22. LabradorLover

    apricot / 411 posts

    Just wanted to check in and make sure you are doing alright and hopefully getting excited about your vacation tomorrow!!

    Thinking of you.

  23. yellowbeach

    kiwi / 669 posts

    @LabradorLover: Thanks for thinking of me. I worked today which is a double-edged sword. It's good to stay busy and keep my mind off of things, but today I saw 3 patients with undesired 1st trimester pregnancies who were essentially asking me for terminations (not something I do) or saying they wanted meds that are teratogenic since it "doesn't matter anyway." Some days it's hard to not react and tell people what's really on your mind.

    I went to PP this morning for a "post-op follow-up." Didn't start well - showed up and they said my appointment had been cancelled (no one told me), and then they said "well there's an issue with your sedation since you didn't come with a driver." I'm like - are you kidding me right now? I had the procedure on Saturday and I'm here for the follow-up YOU asked me to attend. Frustrating to say the least. Spent maybe 5 minutes talking to one of the physicians about any questions I had, got the "it's safe to travel tomorrow" nod, and headed back to work.

  24. LabradorLover

    apricot / 411 posts

    @yellowbeach: ugh, I’m sorry about that, definitely frustrating. I really hope you have fun on your vacation and allow yourself to relax and enjoy it. Hopefully when you get back you can figure out the best plan and be able to move forward with it quickly.

  25. mediagirl

    hostess / wonderful persimmon / 25255 posts

    @yellowbeach: God that's frustrating. I hope you can enjoy your trip. ❤

  26. yellowbeach

    kiwi / 669 posts

    Just wanted to stop by and give a little update and thank everyone again for all of the support. Many thanks to @WinnieBee for pointing me towards the support group. That's been a big help already.

    Our trip to Italy was definitely needed. DD screamed for 6.5 hours on the way to Amsterdam, but was a peach on the return trip home. We spent time with family and ate about 25 different flavors of gelato.

    Tomorrow we have an appointment with our RE to discuss getting PGS testing on our frozen embryos. We never did it before bc we'd not had any losses until now. I just don't think I could handle going through something like this again, and PGS would at least give us some assurance against trisomies happening again. I had planned to work part-time come mid-August due to all the health issues I had last pregnancy, so the bright side of that is fitting everything in for a frozen embryo transfer won't be an act of congress.

  27. pachamama

    persimmon / 1405 posts

    @yellowbeach: you poor soul, did he cry in your face for 6.5 hours?!!
    And what does PGS stand for?

  28. yellowbeach

    kiwi / 669 posts

    @pachamama: Prenatal genetic screening - they stick a needle into the itty bitty placenta/yolk sac and suck out a few cells - a bit like a CVS but on an embryo instead. Then they run the DNA tests looking for certain chromosomal abnormalities (Cystic fibrosis or Trisomy 21 for example) and can determine if they are abnormal and unfit for implantation, or normal. Technically you also can know the gender and decide to implant based on gender, but I don't think we'd do that.

  29. EmmaNZ

    olive / 53 posts

    @yellowbeach: Hello dear lady. Like you, I lost a much wanted baby. She arrived on 11 April this year. We had learnt after 14 week ultrasound, failed amnio (3 attempts and no fluid), finally CVS succeeded and we found out our darling second daughter had trisomy 18 or edwards syndrome. Much heart breaking discussion crying and sleepless nights followed. We agreed termination was the right choice for her and for our family. I went to the hospital to start the termination process and asked for one last ultrasound. My instincts told me she had died following the CVS and I was right. She had no heartbeat. She was born sleeping 3 days later on 11 April. I will always remember and honour my darling second born daughter. I wanted to share her story, so that you know, we are not alone in this grief. It is real , and raw, and lonely , and tough. But these babies are ours, and were loved. Turn to your partner , lean into your friends and loved ones. Let them love you even if they do it in the 'wrong ' or hurtful way. Let your feelings flow through you. Cry freely. Mention the babies name (if you named them). Talk about it whenever you like. I can tell you..... two months on..... time helps. Not an hour of a single day passes that I don't think of my Madeleine. But I have spring in my step again and feel more like myself. These babies leave a tremendous legacy and she has been the greatest lesson in my life. I wish you peace and joy in your journey, and a third baby if that is your wish:-) so much love to you, and anyone else experiencing grief. Especially the loss of a baby or child gone to soon. Xxx

  30. yellowbeach

    kiwi / 669 posts

    Cross posted:
    We met with our RE today and I’m so glad we did. It was such an encouraging visit. We have 9 embryos frozen and are going to do PGS on them. Since they were retrieved when I was 38, the T21 risk is 1/200 where as now at age 40 its 1/80.

    He predicts 50% will be abnormal on PGS, and the destruction rate for PGS there is <3%. So we should come out of it with ~4 good embryos. And apparently we have a 70% chance of it sticking. Our first IVF Transfer with untested embryos they gave us a 30% chance. I feel really good having something to look forward to rather than just focusing on what we lost. I’m so so glad my husband pushed for us to meet with the RE sooner than later.

  31. periwinklebee

    GOLD / nectarine / 2909 posts

    @yellowbeach: I'm so glad the appointment went well and was informative.

  32. snowjewelz

    wonderful kiwi / 23154 posts

    Just wanted to say I'm still following along here and rooting you on!!

  33. LabradorLover

    apricot / 411 posts

    @yellowbeach: I'm so happy to hear that it went well!! I think those are great odds and will keep everything crossed that it works out!! Stay positive, that certainly helps!

  34. MrsMom

    apricot / 466 posts

    @yellowbeach: I'm so glad things are going well! I think of you often and will continue to wish the best things possible for you!!

  35. 2PeasinaPod

    pomelo / 5519 posts

    @yellowbeach: I'm really glad your appointment went well. Please keep us posted. I check back often to see how you are

  36. Mrs. Pajamas

    apricot / 476 posts

    @yellowbeach: so glad your meeting was positive! We went a similar route and were so glad we sprung for pgs on our frozen embryos after 2 bfn's. We actually had all our embryos come back normal and I got pregnant on our first try (she turns one at the end of the month) so the odds are good. Will be thinking of you...hugs!!

  37. winniebee

    hostess / wonderful grape / 20802 posts

    @yellowbeach: That is a great update. I've been thinking of you

  38. yellowbeach

    kiwi / 669 posts

    Need some encouragement and advice from anyone who has been here. DH and I are fighting so much, and I know it’s just bc these emotions are so raw. I’m really ready to start healing from this, but I’m not sure I will be able to until we are pregnant again.

  39. bhbee

    pomegranate / 3947 posts

    @yellowbeach: I’m not coming from exactly the same place but wanted to commiserate that it’s a long process to heal emotionally. I had an 11w d&c and I think a huge weight lifted off me hormonally and emotionally around the time my hcg dropped to zero (which you also recently posted about i think?) so I hope that will help you too. It gave me more control over my own feelings, but I still felt really alone. Distanced from my husband and my other (adult) family. We did not get pregnant again right away (spent 8 months trying) and by the end of that time (before bfp) I was feeling more at peace about the whole picture, but that was kind of a different issue since we were thinking about stopping trying. But I say it because it changed my whole year way, way more than I would have expected. I hope if you can do ivf again soon it will be a huge help to your healing! You are not alone

  40. LabradorLover

    apricot / 411 posts

    @yellowbeach: No advice from me on this one but want you to know that I am here. Fortunately for us, DH and I were the closest we've ever been after my D&E BUT that is probably only because we mostly fought (A LOT) prior to making that awful decision, unlike a lot of couples who seemed to be on the same page about it.

    Just want you to know that I am here if you need to vent.

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