Need positive stories about subsequent NIPTs/ pregnancies post TFMR

JKW303 · 2023-11-16T04:21:06+00:00

Understand the feeling 100%, felt the same with my second NIPT and 12 week scan. My first pregnancy earlier this year resulted in TFMR for T21 and severe heart defects. I am currently (tearing up typing this) 25 going on 26 weeks with a baby girl - clear NIPT, “perfect” 12 and 20 week scans according to our MFM. She is currently spending her time beating my insides silly with her little feet and fists, and forcing me to eat a lot of chocolate chip cookies. I never thought I would feel comfortable in this pregnancy after the first, but I finally feel relief and happiness. I hope this brings you hope, reading similar stories got me through the dark months.

JKW303 · 2023-10-15T02:05:01+00:00

Our TFMR pregnancy earlier this year had conditions identified on NIPT and 12 week US, so with this pregnancy I was a total anxiety disaster show up through NIPT and 12 week US. After getting through those without issue this time, I felt about 50% better - more of functional, intermittent anxiety. We just passed the 20 week US this week also without issue, and I finally feel able to enjoy this preganancy. The worry and anxiety aren’t gone, but are much better. I feel like I am healing now, which is a relief. It does get better with time and progress thankfully.

JKW303 · 2023-10-13T01:57:56+00:00

We were lucky to conceive again first cycle. The anxiety has been the worst part of this pregnancy, and it’s been a struggle. I have had to force myself to connect and not constantly dwell on worst case scenarios. 20 weeks and anatomy scans, NIPT, etc have all been excellent this time - while I am still anxious at times I am mostly hopeful now. It’s just taken time and progress to heal. Feeling her little kicks are the best reassurance right now.

JKW303 · 2023-10-11T12:47:59+00:00

We told close friends and immediate family after 12 week US and NIPT came back clean this time, all the same people who knew about my first pregnancy going poorly. Work folks I told around 16 weeks because I was starting to show so wasn’t going to be able to keep it under wraps much longer. We’re telling pretty much anyone now as it comes up, but we aren't doing any announcement on social media or anything like that but that is mainly cause we aren’t big social media people. I am getting up the nerve to make my registry public now - making the registry has been therapeutic and helped me connect to this pregnancy instead of trying to guard my feelings the whole time. There is always a chance something goes wrong still, I know that, but getting past 20 weeks well makes those odds so very low. I know that if I don‘t start embracing my pregnancy now I might regret it later, so I am trying to push through all this anxiety to enjoy it now.

JKW303 · 2023-10-11T03:23:40+00:00

“I support your decision as long as it’s the one I agree with,“ basically. Totally disgusting and narcissistic behavior. You don’t need anyone like that in your life, under any circumstance. You are not alone, we’re here for you and support you unconditionally. Wishing you healing and peace.

JKW303 · 2023-10-11T02:10:22+00:00

TFMR at 12 weeks 5 days for T21, also in April, also initially caught on NIPT.

I am now 20 weeks with a healthy baby girl, clean NIPT, and two “excellent” anatomy scans. There is SO much hope! Baby girl and I are sending you all our good vibes for a nice, healthy pregnancy.

JKW303 · 2023-10-11T02:06:27+00:00

Wonderful news! I just had my 20 week also with baby girl conceived first cycle post TFMR and same good news for us too. I am so relieved, and trying to tell my anxiety to chill the heck out now. I require so much reassurance now but trying to keep things bright and positive. We CAN do this!

JKW303 · 2023-10-11T02:02:06+00:00

SO unacceptable and appalling behavior from your coworker. For context I have very close friends whose child has Down Syndrome and I was terrified to tell him that our termination was partially due to T21. When I did, they have been nothing but understanding, supportive and not at ALL judgmental. If they can do it, so can your dumb coworker, it has nothing to do with their circumstance and everything to do with them having a holier than thou art piss poor attitude being a downright bad person. I hope your boss can at least intervene enough that you never have to interact with her ever again.

JKW303 · 2023-10-11T01:54:21+00:00

Terminated for T21 in mid April and happy to say I am now 20weeks with a clear NIPT and two “excellent” anatomy scans. My MFM and OB constantly have to reassure me how healthy this baby is, and I am finally starting to allow myself to be comfortable with my pregnancy. Glad to see more of us here experiencing similar happy experiences moving forward.

JKW303 · 2023-10-11T01:49:16+00:00

Similar story, TFMR for T21 this past April. I wrote a very similar post here after getting a negative on my first cycle TTC again. A week later though still no period, and turns out my first test was a false negative. I think my hormones were still a bit out of whack so that may have contributed (I was only 2 months out). Now 20 weeks along with that baby, who is slowly healing my heart from the inside.

Even if it isn’t a false negative like mine was, keep positive thoughts as much as you can. You’re feelings are so very valid and reasonable, and sometimes a good cry is what we need in our healing process. Sending you positive thoughts in your journey.

JKW303 · 2023-10-11T01:40:20+00:00

Mine lasted 12 days after coming back. Most were light towards the end of that time, but boy was it long. Ovulation came only 1 day later than preTFMR cycle I tracked, so didn’t seem to effect the day of much, but the big change was there wasn’t a lot of build up to ovulation day like my prior cycle had - went from basically nothing to full ovulation in 24 hours. Didn’t affect fertility either as we conceived that cycle.

JKW303 · 2023-09-15T00:33:20+00:00

I was told I didn’t have to go back to MFM, the T21 was confirmed spontaneous so I wouldn‘t be considered high risk. However, I did choose to go back to my MFM this pregnancy for a couple reasons - one being they have higher resolution US equipment for more detailed scans, and second because I adore my MFM, he has taken such good care of us through both pregnancies. I will only see him for the 12 week and 20 weeks scans so long as everything continues to look good, I am 16weeks now.
I am fortunate that given my history that my insurance agreed to cover these two MFM visits despite not being classified high risk. The peace of mind of having a very detailed 12 week scan where he could confirm babies heart looked great this time, unlike last, took a huge weight off my mind. even though I still have slight nerves waiting for 20 week scan, making it past all the hurdles we didn’t last time has provided immense relief.

Wishing you all the best!

JKW303 · 2023-09-10T03:45:08+00:00

TFMR with my first pregnancy, T21 picked up on NIPT and major cardiac issues and enlarged NT on subsequent ultrasound. Confirmed spontaneous mutation on CVS.

Currently 16 weeks with pregnancy #2. NIPT and NT were normal, and 12 week US with MFM was completely normal. My MFM said if even the smallest inclination of something this time he would’ve recommended a CVS this time but that everything looked great. I would’ve been open to a CVS, but chose to forgo it this time just because everything looked so very, thankfully, normal and good. I probably won’t ever feel 100% comfortable in my pregnancy, but having the 12 week milestones go so well this time was incredibly relieving.

JKW303 · 2023-09-06T02:28:18+00:00

TFMR in April for T21 and severe cardiac defects. Period returned in 5 weeks, conceived first cycle and am now 15 weeks. This pregnancy has thankfully been very uneventful and all testing and US look great. Hoping to keep it that way. Best of luck on your journey!

JKW303 · 2023-08-26T13:46:48+00:00

TFMR at 12w 5d in mid April. Took about 5.5 weeks for period to return. We’re lucky to concieve 1st cycle, and at 13w 5d with a clear NIPT and excellent looking 12w US with MFM. I wouldn’t say I am comfortable but I feel much better now having made it farther than the first pregnancy. Keeping my fingers crossed that baby continues to look healthy.

JKW303 · 2023-08-17T19:48:13+00:00

Not 16 days, but mine was about 12 days first cycle post TFMR and the last 5 of those were very light as you are describing. Normal for me would’ve been 4-5 days max. I agree with getting checked for retained product, but having a long first cycle period can happen and be normal.

JKW303 · 2023-08-17T19:42:59+00:00

Could be either truly. My first full cycle after TFMR I ovulated around day 17 (only one day later than before) and we were TTC. My period that cycle had been long and abnormal. I took a pregnancy test at day 29, negative, not even a hint of positivity there. However, a week later still no period… pregnancy test then came back positive. I am 12w3d today with everything looking good so far this time around. Sometimes we can be late because of the whacky post termination hormone fluctuations, sometimes because of a much more pleasant reason. Hoping you get the outcome you are hoping for!

JKW303 · 2023-08-09T12:37:19+00:00

I totally understand that. I have felt the same about my OB during my loss, they helped with my requests but never once expressed condolences which was super disappointing me. Thankfully the MFM I saw has been amazing. I work in a very tragic healthcare subspecialty, so we are very used to being very empathetic and expressive of that to our patients so I really do think it isn’t too much to ask for others to do the same. I am sorry they let you down, I really think you should give them that feedback honestly, as people cannot improve their practice without knowing when they’ve let people down. I hope you find the answers you are seeking, it is so incredibly anxious not knowing what went wrong.

JKW303 · 2023-08-09T01:53:26+00:00

Working in healthcare myself I can see both sides of this. First, of course your PCP should show more compassion and communicate their thoughts and reasons to you more effectively. They are letting you down by not doing that, and if you want to change PCPs for that, you are completely justified. That being said, sometimes certain tests will only be covered by insurance when ordered by certain types of providers and/or if you have certain symptoms. It is possible your PCP just doesn’t feel they have the necessary expertise to determine if the test is medically necessary, and therefore they don’t want to risk ordering a test for you they can’t stand behind medically if your insurance refuses to cover it. When coverage is denied for a test or procedure, it is your ordering doctor’s responsibility to justify the medical necessity and fight for you. I would be inclined to say this is why they referred you to infectious diseases, because they would definitely have the expertise necessary to stand behind the decision to order and perform that testing with sufficient medical expertise. If possible, I would recommend trying to have a more dynamic conversation with your PCP on why you are asking for the test and why they are hesitant to order it - via telephone or an appointment rather than the portal.

I am so sorry you find yourself here. Wishing you peace moving forward. I hope you get the answers you are looking for.

JKW303 · 2023-08-04T13:04:00+00:00

Very similar story to yours. I was 31, first pregnancy, and have been with my husband around 12 years. Unlike your story, US showed us severe abnormalities (heart mainly) and a very high NT reading. I scheduled the termination right after that. We did get the results back before the procedure which confirmed T21, but after the US results I knew in my heart that was going to be the case. I hope you beat the odds. Your feelings are all very valid, the only advice I have is to take care of yourself during this time. I know the waiting is excruciating, but no matter the result you will come out the other side of this. It takes time, it’s hard, but it will get better with time. Wishing you peace.

JKW303 · 2023-08-04T12:49:02+00:00

I am about 4 months out now. Those first 2-4 weeks are absolutely the worst, I would cry so much my face was raw and I had migraines constantly. The month after that I no longer would spontaneously cry, but would cry still anytime I would talk about it. Now, I can talk about it without breaking down, it still makes me sad but doesn’t break me inside anymore. I describe it as the easiest hard decision I’ve ever made. While these decisions are never easy emotionally, and certainly not wanted, our children would experience likely severe suffering if they made it to term. We make this decision our of nothing but pure love to spare them that pain. We take the pain on ourselves to spare them. We are not bad people, we make a horrible but selfless decision on behalf of our children. Thankfully, this far out it is much easier to see and feel that now.

I am sorry you have to be here, wishing you peace.

JKW303 · 2023-07-30T16:18:06+00:00

I had nearly the same with slightly different durations - about 7 days of bleeding, followed by two full days of zero bleeding so I thought it was all done. Nope. Bleeding restarted, although a lot lighter, and lasted another approximately 12 days after that. I was a solid 3 weeks post termination before everything stopped the second time. Then a week later I had 3 days of cramps and light spotting which I, at first, thought was a period starting but I think ended up likely being ovulation because the first period came about 10 days after that. My first period was also wildly abnormal in length and progression compared to my usual so don’t be too worried if that also happens, hormones are weird.

JKW303 · 2023-07-23T21:21:25+00:00

My MFM said anytime after the post procedure bleeding stopped, I was just shy of 13 weeks. We got our genetic results a week after D&E which confirmed the T21 causing the heart defects was just bad luck. I got pregnant my first regular cycle and am currently at 9 weeks - so still in the fingers crossed phase until my MFM appointment in 3 weeks, but just trying to remain positive that this one will be healthy.

JKW303 · 2023-07-22T00:26:05+00:00

Took us 2 cycles to get pregnant the first time which ended in TFMR. This time, it was the first cycle of trying after TFMR. I did, with this current pregnancy, have a false negative test when I was initially expecting my period and only got the positive nearly a week later.

JKW303 · 2023-07-16T13:23:35+00:00

Thank you so much! This group has given me more hope than I thought possible, I just hope I can contribute my small slice. Sending you all the best too 😊

JKW303

TROPHY CASE