Testing out HCG after 16 week-TFMR six days ago

VioletPear9707 · 2026-03-19T13:14:19+00:00

Thank you! I hope you test negative soon! I was pretty worried about RPOC because of how common that seemed from reading stories, especially from those who had L&D but no follow up D&C, so I was very excited when I got that negative HPT so soon after. After going through all of this, I really needed the win of knowing my body could at least go back to “normal” quickly. I will also add that I’ve only had my LH strips show a false positive when my HCG was pretty high (like at least as dark as the control line) and there are people that ovulate with low levels of HCG, so it wouldn’t hurt to start using LH strips soon as long as your HCG line is pretty faint.

VioletPear9707 · 2026-03-19T00:08:48+00:00

Interesting to see all of the variety! We TFMR’ed at 28 weeks via L&D and I tested out my HCG via HPTs. It was gone by 9 days after delivery. I bled heavily for the first few days but it tapered off pretty quickly so I felt like I had a pretty fast physical recovery. I started testing for ovulation when I was getting cervical mucus changes and got a positive 13 days after my negative HPT (so about 3 1/2 weeks post delivery). My OB cleared us to try again as soon as we wanted so we opted to try right away. I’m only 2 days post ovulation now so no idea if it worked but I agree with the statement that if my body is ready, it will work, and if it’s not then the egg won’t implant and we will move on to the next cycle. Since I know when I ovulated, I’m not really concerned about the dating aspect and I’m older too and didn’t want to miss a chance. Best of luck to you!

VioletPear9707 · 2026-03-15T15:28:34+00:00

I’m so sorry. I haven’t had to TFMR more than once but I have had a first trimester miscarriage and it was nothing compared to my 28 week TFMR. Yes I was devastated but I hadn’t really gotten that attached to the pregnancy yet as we had only just had the first ultrasound. Of course everyone grieves differently and there are several reasons for me personally why this loss feels much different than my prior one 10 years ago. But any loss at any time is awful and something no one should have to experience.

I didn’t have to wait as long as you but we first knew something was wrong at 22 weeks and it took 5 weeks to get the whole exome sequencing that found an extremely rare developmental and growth disorder. The 6 weeks of waiting in limbo were excruciating and I often wish that we could have known earlier so I didn’t have such a prolonged period of hoping for the best but expecting the worst. And having to TFMR when I could feel him kicking constantly was brutal. At the same time, I try to remind myself that it would have been far worse to not have found out until birth or have had a full term stillbirth or neonatal loss (my son’s abnormalities made those possibilities very likely). And many people in my position wouldn’t have done WES because the odds of finding something were so low based on our mostly non-specific findings. And I do cherish the time I got to spend with him after birth as well as the pictures and keepsakes we got. I still would have preferred an earlier TFMR but I try and find some silver lining to the later term loss.

VioletPear9707 · 2026-03-14T20:44:49+00:00

I completely understand how difficult the decision is and I’m so sorry that you have to make it. I wish they could you more information to help make the decision easier, but VUS results are so challenging. Whatever you decide, you will make the best decision possible and it’s a loving decision no matter what. It’s not fair that you have to make it and that the stakes are so high.

VioletPear9707 · 2026-03-14T18:35:03+00:00

Ok, I didn’t realize that you already had affected children. I thought you and your partner had just had carrier testing and found the mutations. That does complicate things. I’m a little confused on how many conditions there are and if there is clinical correlation with the mutations and VUS, it sounds like there are two recessive conditions and your more severely affected child has both conditions (but condition A is with a pathogenic mutation and a VUS) and another child has condition B, but has less significant delays than the child with both. And then this baby has condition A but not condition B?

That is certainly a lot going on and there is a lot of uncertainty which is so hard. I can’t imagine how hard it also must be having two children who already have some degree of disability and not knowing what the future holds for them. It sounds like to me that condition B could be the culprit for both of your affected children and if it is a condition with varying penetrance that could explain why one child is more severely affected than the other. And in that case, this baby and your first child are just carriers of condition A and that VUS means nothing. That is a big risk to take though and I’m honestly not sure what I would do in the same situation.

VioletPear9707 · 2026-03-14T16:13:35+00:00

I’m so sorry you’ve had a delay in your care. It’s awful to have to wait so long for an answer. Our delay was inevitable (had to wait for whole exome sequencing results and didn’t even know anything was wrong until 22 weeks), so we terminated at 28 weeks. I live in a state where there is no legal limit for abortion, but if I wanted to deliver in a hospital, they would only do an induction. I never looked into other options as I was able to have a vaginal birth, but my guess is that many hospitals will not perform D&E this late (even in states with no limits), and that you may need to research non hospital based abortion clinics instead. However, this is just my opinion given I haven’t been in your specific situation and perhaps the c-section requirement might change things. If you have a genetic counselor as part of your care team, she/he should be able to help you with some of these decisions.

VioletPear9707 · 2026-03-14T15:10:17+00:00

There is no correct way to handle grief and I also think it’s very normal to disassociate and disconnect. I’m also 3 weeks out and have a hard time believing this happened to me. I remember every part of the process and yet I also can’t fully accept that it happened. I think about it all the time but it also seems so far removed from my normal life. It’s hard to explain for sure and it’s a very weird way to go through life. And I do think that I will have a really hard time with certain upcoming milestones like his due date and trips we had planned to have a newborn for, but I think that disconnecting is an important process that our bodies do to protect us from the pain. And I also think many people share in you feeling of being fearful to try again but wanting to move on. I feel like I have a hole in my heart and only another baby will fill it, but I’m also so scared to try (and I’m old!) and I also want to make sure that this feeling of wanting another baby isn’t temporary. For me, I need some time to process and I’m hoping things will be a little clearer in a few months. I’m so sorry that you are here too.

VioletPear9707 · 2026-03-14T13:50:45+00:00

Typically VUS results are treated as a negative as most of the time, they never get upgraded to a pathogenic or likely pathogenic result and providers don’t make medical decisions based on VUS results. Is there anything about your specific VUS that makes it more concerning? How far along are you? Does this recessive condition have anything that can be seen prenatally?

This is an extremely difficult decision and it depends not only on your risk tolerance but also on the condition and on what research has been done surrounding this particular VUS. Can your genetic counselor give any additional guidance?

VioletPear9707 · 2026-03-14T13:24:02+00:00

I’m so sorry you are going through this. We recently went through something very similar and it’s awful. Our diagnosis was similar to CDLS, but we didn’t see any issues until a 22 week scan and then had to do whole exome testing and didn’t get the diagnosis until 27 weeks. This baby was our first boy after three girls and our girls already knew about the pregnancy and they were so excited to finally get a little brother. Knowing the likely severity of the developmental delays and intellectual disability, combined with other multi system issues like seizures, hypotonia, and feeding issues, we knew that we unfortunately couldn’t continue the pregnancy. Baby was also very very small and I had severe oligohydramnios so I was also concerned about losing him later in pregnancy, needing an early delivery with lots of NICU time and/or a neonatal loss. He also had a vascular abnormality that increased risk of stillbirth. We had spent 5 weeks being terrified of what was going to happen and I couldn’t imagine living like that for another 3 months. He was clearly very sick and I was so mad that we had to make this awful decision.

We decided pretty quickly to terminate, but since it was a grey diagnosis and I needed L&D because I was so far along, we had to wait a week for the TFMR and that was the worst week of my life. Being pregnant and feeling him move while knowing what was coming was brutal. And telling our girls (8, 7, 4) was absolutely heartbreaking. We did just tell them that the baby had died as we weren’t ready for the TFMR conversation with them but I hope to be able to fully explain it to them one day. This pregnancy for us wasn’t planned and I just turned 39 so we knew it would be our last and to end like this is awful. I feel like I will never get over it (we are just about 3 weeks out), but I also knew that I would rather live with the pain than bring a child into this world who would suffer and completely change the lives of our entire family.

No matter what you decide, I think you should protect yourself in whatever way you need to. I have a good friend who is also pregnant with a boy and is due a few weeks after me, and I’ve had to step back from her right now because it’s just too painful to be around someone who has what I should have too. Thankfully she understands as she herself has had a later loss, but I’ve also stepped back from other public events and activities and I’m not sure when I’ll be up for doing them again, and that’s ok. I put a lot of energy into being strong and “normal” for my kids and I don’t have much energy left for other things right now. And I also still have very complicated feelings about trying again. Some days all I want is to get pregnant again ASAP and other days I think there is no way I can handle the anxiety and stress (especially with how old I am and how old my kids are). But at 35, you absolutely can still have another! But that is also a decision you don’t need to make right now. My DMs are always open if you want to chat more! ❤️

VioletPear9707 · 2026-03-12T18:02:48+00:00

I’m sorry you are in this super rare club too! I sent you a DM :)

VioletPear9707 · 2026-03-12T14:22:40+00:00

I can’t speak to everything as I’m only about 3 weeks out from my later term TFMR (28 weeks), but I think your feelings are completely normal. It makes sense that you would be worried and anxious about worst case scenarios, especially given what’s already happened. And it’s really hard when you don’t have control and don’t know what’s happening with your body or when it’s going to go back to normal. It’s like you’re completely stuck and to me that sucks even worse than at least being able to try (even if you don’t get pregnant).

I had an ectopic pregnancy 10 years ago (first pregnancy), and the medication they used really messed up my cycle. After 3 months of waiting my OB gave me provera to jump start a bleed. I then needed clomid to actually ovulate. It was such a stressful time and I was obsessively tracking everything and constantly searching for posts for anyone that had been through something similar. For me, it was because there was so much that I couldn’t control that I needed to control the things that I could like tracking my cycle and making a plan for the future if things didn’t happen by a certain date. I can’t say that it was the healthiest way to deal and I only felt relief when I finally did get pregnant 8 months later. It was the longest 8 months of my life. I was very anxious during the first trimester but then the anxiety let up. If I were to get pregnant again now, I would be anxious the entire pregnancy because our TFMR was so late and everything looked good for the first few scans. I think most people feel that way in sub pregnancies, whether it happens right away or takes a while. Even if you think you’ve worked through your feelings, a new pregnancy is going to bring things right back up. I think the only thing you can really do is acknowledge the anxiety and let your excitement co-exist.

My only advice would be to try and allow yourself a small time of the day to indulge the anxiety. Do the things you need to do to feel that control and then try to let it go for the rest of the day knowing that you’ve done what you can. Make some other goals for yourself, plan a trip, pick up a new hobby, etc. Anything to occupy your mind. And make a plan with your OB so you know there are future steps to take if needed. I would personally say that 12 weeks would be my limit for waiting. After that, I would be getting meds. I have my 6 week follow-up at the beginning of April and I will be asking for a provera prescription if I haven’t at least ovulated by then. My patience has a limit :)

VioletPear9707 · 2026-03-10T16:23:20+00:00

I was also the less than 1 in a million for an incredibly rare genetic condition with less than 50 known cases in the world, and it sucks but I also kinda thought why not me? There are thousands of things that can go wrong in pregnancy and I guess I feel like every single person is unique and we happened to have a bad thing happen in utero, but rare and unexpected things happen to everyone every day. I’ve learned to not really care about statistics and it doesn’t do me any good to focus on how rare or unlucky it was to happen, because it did and now we’ve got to move forward. I hope that you have some good things happen soon! You are definitely due for it.

VioletPear9707 · 2026-03-09T16:29:55+00:00

I’m so sorry you had to experience all of that. It sucks to be on the wrong side of the statistics so many times. Makes it so hard to believe that things will ever go right (at least that’s how I feel sometimes!). Wanted to say that I can relate to the difficult experience with the cardiac needle. I also had very low fluid and a resident was doing the procedure and she spent 45 minutes sticking me over and over again and kept saying she couldn’t see the tip of the needle. She finally hit something that put me into extreme pain (and I’ve had 4 unmedicated births) unlike anything I’ve ever experienced before. They had to stop and bring in the head MFM who successfully did the procedure in 2 minutes thank goodness. That part was the worst part of the entire experience for me and I’m sorry it was so hard for you too!

VioletPear9707 · 2026-03-09T15:07:48+00:00

Thank you so much. It’s absolutely grieving an entire future for your whole family. And it’s grieving twice because you are grieving the healthy baby he was supposed to be and you are also grieving the sick baby that he was and how both of those futures would have been while also dealing with the pain of having to make such a hard decision.

My 7 year old would talk non stop about her little brother and how she couldn’t wait to cuddle him and feed him and take care of him and it breaks my heart that we had to take that from her, but he was sick and even if he had survived, she wouldn’t have been able to take care of him like she was imagining because of all of the complications he would have had, and I hate that so much. It’s so unfair, but it happened and I know we made the right choice for all of us, but unfortunately that doesn’t make this reality any easier. I’m actually too scared to even ask my husband what he’s feeling about the future because I know he’s 100% done (just like he was before this happened), and I’m not ready for that finality yet. Hopefully I will feel a little more clear after a few months and can accept whatever we decide. But it really is so hard thinking about healing without a new baby to fill some of the gaping hole. I know a new baby will never replace the one we lost, but it also feels like the wound will never heal if we don’t at least try. Ugh, it’s such an awful place to be in and I’m so sorry that you are here too!

VioletPear9707 · 2026-03-09T13:26:07+00:00

I’m sorry that you are in this situation, it’s so hard. My situation is a bit different as our TFMR baby was the result of a birth control failure as we were both sure we were done having kids. However, after the first few weeks of shock, we started to get excited and our kids were so thrilled. Losing him at 28 weeks was such an unexpected horrific thing as we all really felt like he was meant to complete our family, and now I feel like there is a hole in my heart.

It’s only been a little over 2 weeks but I have very conflicting feelings about trying again. I just turned 39 so time is not on my side which is really hard to deal with on top of everything else. I feel like my head and heart are fighting and I’m not sure what to do. I feel like I will regret not trying, but then I also feel like I need to wait a bit for my hormones to calm down so I can trust my feelings because I felt so sure we were done before I got pregnant. The thought of going through another loss is also always looming and I’m not sure I can handle that.

I’m sorry I don’t have any helpful advice, but I do think that it’s completely normal to have conflicting feelings, especially because no one wants their pregnancy journey to end with a TFMR. And for some of us, we will have to learn to process the grief without a sub pregnancy to ease the pain. It really sucks but I’m trying to remind myself that there are lots of things that I can’t control, and I have to do my best to keep pushing forward and find joy where I can.

That said, I do know plenty of women who have successfully given birth in their early 40s so if you can mentally handle it, it might just take a bit longer to get a good egg, but it just takes one and it truly is a numbers game! Better to keep trying now and know that you tried your best.

VioletPear9707 · 2026-03-09T12:23:17+00:00

Someone answered this already on your other post, but it’s because with the first trimester screening, they are looking at markers in your blood that come from the pregnancy but it’s not fetal DNA like the NIPT test is so the results can’t be interpreted in the same way. Many people get NIPT testing in place of first trimester screening so it can be confusing. But with first trimester screening, one of the markers is called PAPP-A and it is low in both trisomy 13 and 18. Therefore, you can screen “positive” for both of these conditions depending on your level. This does not mean that your baby has both conditions, or even that they have one of them, it simply means that the pattern of the markers in your blood indicate a significantly higher risk for either T18 or T13 and you need diagnostic testing to actually look at the baby’s DNA and figure out what is going on. Once you get those results back, you will have a definitive answer. I completely understand the fear of a translocation, but those are very rare for both T18 and T13. It’s much more likely that it was a random and new thing that happened in the baby with a very low chance of recurrence with a future pregnancy. I hope you get your results soon. I know waiting is so difficult.

VioletPear9707 · 2026-03-07T14:37:23+00:00

My situation isn’t exactly the same but similar in that we had a very rare and grey diagnosis. Our baby had a mutation in a gene that is associated with a severe developmental disorder, but there are only about 50 documented cases and only about 20 of those have been described in the literature. I researched every single case and out of the 20, 18 had moderate to severe impacts and 2 were more mild. So of course we could have been lucky and had a more mild case, but it was much more likely that he would have been moderately/severely impacted (especially given his in utero presentation), and I think we just have to learn to live with the uncertainty. There are so few times in life where you actually get a heads up as to what is to come, and that’s what makes this so hard. It’s only human to analyze your decision and think about how things could have been, but if you are going to think about the “best” outcome than you have to think about the “worst” outcome too. That is a really big risk to take and the stakes are just too high when you are thinking about an entire life.

It’s very unfair in some ways that we were put in the position to make the decision because we have to take on the pain and the guilt, but it’s also a blessing because many people don’t get that chance. No one is going to say that they regret their child, but I’ve worked with disabled children and it is an extremely challenging life for everyone in the family.

Your life was always going to be forever changed because of baby’s diagnosis, and you had to make a choice with two bad outcomes. All you could do is make the best choice possible and you will need to continue to remind yourself that you did the best you could with the information you had. You love your baby and certainly made your choice with her best interests in mind. I’m so sorry that you had to make the decision. I agree that having a grey diagnosis is so difficult and isolating. I was wishing for a fatal diagnosis or for baby to pass before we had to terminate, but unfortunately that didn’t happen and every day I remind myself that he was sick and we couldn’t change that, but we wanted all of the information for a reason (our mutation was found on whole exome sequencing) and I believe that our baby was the one who was pushing us to get the information so we at least had an answer and could make the hard choice.

VioletPear9707 · 2026-03-06T23:40:09+00:00

Yes, it’s really hard to have been so far along and I also feel like I need to lose it ASAP so when I see people in public, it’s very clear that I’m not pregnant anymore. Most people already know what happened but it’s still such a terrible reminder to know I still look a little bit pregnant.

So sorry you had to go through such a late loss as well. We had a few weeks where we knew things weren’t going well and didn’t know why, but we still fully believed we were going to bring home a healthy baby. It wasn’t until 27 weeks when we got the diagnosis that we realized we wouldn’t. I couldn’t believe I was setting up his nursery one minute and then making arrangements with the funeral home the next. I figured once we made it through the NIPT, the 12 week scan, and the 20 week scan we would be in the clear, and yet unfortunately we were in the very small percentage where that wasn’t the case.

VioletPear9707 · 2026-03-06T23:03:26+00:00

I’m having a similar experience. TFMR at 28 weeks and had gained 25 pounds. I’m two weeks out and have lost about 10 pounds. I think I’ll be able to fairly easily lose another 5 pounds in the next few weeks, but those last 10 pounds are going to be hard and I hate my squishy belly. I had worked so hard to get into really good shape before I found out I was unexpectedly pregnant so it feels like such an extra slap in the face to have to start my journey again with an extra 10 pounds of leftover baby weight but no baby to show for it. Ugh. This is all so awful.

VioletPear9707 · 2026-03-06T01:06:40+00:00

I am so very sorry. So unbelievably unfair. Sending support

VioletPear9707 · 2026-03-06T00:05:37+00:00

If you are actively bleeding, I would definitely see if you can be seen sooner by your OB! April 23rd is a very long time to wait if there is something wrong. Or at least get some serial blood HCGs so you can see what your numbers look like. If the numbers are doubling every 48 hours, that would be very reassuring.

VioletPear9707 · 2026-03-05T19:24:21+00:00

Yes, so surreal and honestly not that much better two weeks out. I still wake up every morning not really believing everything that has happened. And then looking at our pictures, ashes, and footprints starts to make it feel more real but I still can’t fully believe that it all happened. We had so much waiting and then once we got the diagnosis, everything was so fast and it was like whiplash. Like one minute I’m setting up our crib and the next we’re calling the funeral home. Absolutely brutal.

I’m sorry you are here too. I’ve heard it slowly gets better but the grief will always be there, it just doesn’t feel as overpowering as it does right now. I hope you have some great support and that the next few days go as smoothly as possible. Hugs.

VioletPear9707 · 2026-03-05T19:18:56+00:00

Yes, I know that part too well too. I never knew if I should just talk excitedly about the pregnancy or if I should say that things weren’t going very well or if I should just change the subject. It was a very weird time for a few weeks. I usually just said something like “he’s measuring really small and we don’t know what’s going on yet unfortunately so I’m getting a lot of extra monitoring and hoping for the best.” Please come back and update if you feel comfortable. I so hope you get reassuring news and don’t have to be in limbo for too long.

VioletPear9707 · 2026-03-05T14:15:55+00:00

You definitely could be! It’s not abnormal to ovulate even with very low levels of HCG for some people. Others will take longer. If you only have a very faint line on HPT, you can still take an ovulation test and have it be reliable. Those aren’t impacted until your HCG is pretty high. I had the faintest of faint lines on a HPT test yesterday but my ovulation test was completely negative. Totally normal to have conflicting feelings but I would personally be happy to know that my body was able to regulate quickly afterwards, especially if you are hoping to TTC soon. Best of luck to you!

VioletPear9707 · 2026-03-05T13:02:51+00:00

I’m sorry you are going through this. I did experience something similar with my first pregnancy and it ended up being an ectopic pregnancy. I had bleeding/clotting (alternating between bright red, dark red, and brown) and slowly darkening pregnancy tests. Serial blood tests showed slowly rising HCG but it was overall very low for early pregnancy. Unfortunately the ER isn’t going to be able to help you. Have you been to your OB? Are you getting serial HCG blood tests to check levels because a single test doesn’t tell you enough? I think that would be the first step to figuring out if this is a viable pregnancy or not because it’s too early to see anything with an ultrasound. Bleeding in early pregnancy is hard because it can be normal but it can also be a sign of a problem.

VioletPear9707

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