TTCAL October 2020

akoros · October 2020

**This is a general trigger warning that CP, miscarriage, selective termination due to medical complications, and/or stillbirth may be mentioned.**

Introduce yourself and anything you think is important: number of loss(es), when you had the loss(es), diagnosis/conditions surrounding loss, etc.

Status:

How are things going?

What is something that you are struggling with and/or what is going well?

Any testing coming up/any recent results?

Questions?

GTKY: Any Halloween plans?

bumblebee0210 · October 2020

Introduce yourself and anything you think is important: number of loss(es), when you had the loss(es), diagnosis/conditions surrounding loss, etc. 2 MMCs (Dec 2017, singleton, Sep 2020, mono/di twins), 1 CP Jul 2018

Status: WTO, but first cycle post-D&C so should be topsy-turvy

How are things going?

OK-- it's still fresh and I am sometimes in the "totally over it"-mode and sometimes in the "very sad and crying in the middle of the day"-mode. Also getting used to whatever it means that now this has happened twice, and thinking about testing, etc.

What is something that you are struggling with and/or what is going well?

Have been chatting with @akoros about this in WTO-- trying to figure out whether I need to get tested for anything and if so, what. Basically, since this last loss was mono/di twins, the doctors don't want to put me in the standard RPL bucket, and are more inclined to chalk my experience up to bad luck. I am getting the standard day 3 tests once I get to day 3, because I had some idea that they might tell me something about declining egg quality (I am 33 but my mom went through menopause young so not crazy), but tbh I am not even really sure if that is true. Like maybe I have low-quality eggs and still have totally fine FSH etc because I don't have low quantity? I have basically gotten pregnant every 3 months of trying (almost on the dot!) so ovulating doesn't seem to be my issue, but three of those pregnancies have ended in loss, so quality might be.

Any testing coming up/any recent results?

Still doing bHCG from my last loss. Was 93 2 weeks out which is not great but much better than last time, when it was nearly 2000 ~4 weeks out.

Questions?

As above-- would love to hear whether you guys think there are useful tests, and if so what they are. My doctor said she is totally ok with sending me to an RE if that's what I want, she just doesn't recommend it because in her judgement it is unlikely that it will help relative to trying naturally.

Also-- has anyone gone deep into the whole "It starts with the egg" protocols? I read it after my first MC and switched to glass tupperware and took some extra vitamins, but now I am considering the more advanced things (like diet changes).

GTKY: Any Halloween plans?

Ugh. I wish. covid.

bumblebee0210 · October 2020

@akoros Also-- I don't *have* an MFM, though I did see one for the twins, and they did the D&C and talked to me about the loss, and they both (there was an attending and a fellow) separately told me that they thought I was in the "bad luck" bin-- again because I think they see issues with mono/di twins a lot. I had thought that for early losses (mine were fetal age 6.5 weeks for the singleton and ~8.5 weeks for the twins), people typically see an RE, whereas for later losses it's more common to see an MFM? My doctor is a family med doc but she does almost entirely OB and is very up on the research and runs the family med residency at Brown so I trust her judgement, at least on like when to send me up the chain. Did you see an MFM for RPL testing?

Also-- thanks for bumping the other chain! Will read

akoros · October 2020

Some of these topics were coming up in other threads, so decided to kickstart this month's TTCAL thread. I hope I didn't step on anyone's toes! Also slightly adjusted a few questions since this thread was moving from weekly to monthly, apologies if I accidentally deleted any important ones (and then promptly got distracted by work, so super slow in putting my own info up)

Introduce yourself and anything you think is important: Two losses, my first was a TFMR in December 2019 due to T21 and cystic hygroma, and then I had a missed miscarriage this past July at about 15 weeks, unexplained.

Status: WTO

How are things going? More or less ok. Getting nervous as I'm close to hitting the 1-year mark of when I realized I was first pregnant

What is something that you are struggling with and/or what is going well? Still oscillating between wanting to tell friends what's been happening and just avoiding them entirely. COVID has made it easy to avoid people, so most of my friends have no idea that I lost a second pregnancy (and, frankly, most of them also don't know about the first pregnancy either, making it more awkward). I'm also going to start hitting more anniversaries/milestones soon, which is going to be tough, and one reason why I want to "come clean" and just tell them what's happened and to be patient if I get weird at times. As for what's "going well", in general we've mostly gotten back to our normal routine, as normal as it can be these days. I am ready to try again, I just don't think I'll ever not be scared about it.

Any testing coming up/any recent results? Nothing new.

Questions? None right now

GTKY: Any Halloween plans? Not sure, I love Halloween but lived in an apartment with no trick-or-treaters until a little over a year ago, plus COVID. Thinking about making some individual treat bags for any kids who come by and leaving them outside ~5 at a time for them to take (I know some goblins will take them all, which is why I'm thinking to portion them out).

akoros · October 2020

@bumblebee0210 First and foremost, I'm not sure if I said it yet, but I'm so sorry for your losses. I totally hear you on the mood swings, unfortunately I think that's just how grief is. It also felt different with the second loss for me. On one hand, I knew what to expect, which was sort of comforting. However, on the other hand, it's been hard getting used to the idea that this has happened more than once. As scared as I was, with my second pregnancy I kind of thought that we'd be fine this time around since we already were struck by lightning once. It's hard to be comforted by "it's just bad luck" after that.

As far as testing goes, my losses have all been later (~15 weeks), so I've only ever seen an MFM with a genetic counselor, first for the CVS after my 12-week scan noted the cystic hygroma and then again after my second loss. I mostly mentioned it because I found the counselor to be very helpful with explaining potential causes for my losses/problems (and why some may not really apply to me), testing, and next steps. Even if you don't see a MFM, maybe you could ask about a genetic counselor? I have a lot of confidence in my normal OBGYN, but it's a lot for one person to keep on top of. The counselor has also been good about giving me further resources on local therapists/support groups, answering all my follow-up questions, and referring me to relevant research.

Prior to my first pregnancy I did the "Day 3" tests since we'd been trying for over a year. After my first loss I did do a NxGen (hereditary disease) test and then after the second we did a fetal tissue karyotype. All in all, these are the tests I've had done, roughly categorized by my "Not-A-Doctor" plain-ish language groupings. Aside from the fetal karyotype they were all blood draws. Put it in the spoiler because it's long:

Test Description	Group
Factor V Leiden	Thromophilia evaluation
Protein C	Thromophilia evaluation
Protein S	Thromophilia evaluation
Prothrombin gene mutation (Factor II)	Thromophilia evaluation
Antithrombin III deficiency	Thromophilia evaluation
APS Panel (antiphospholipid antibody syndrome)	APS Panel
APS Panel: Prothrombin Time (PT)	APS Panel
APS Panel: Activated Partial Thromboplastin (aPTT)	APS Panel
APS Panel: INR	APS Panel
APS Panel: Thrombin Time	APS Panel
APS Panel: DRVVT	APS Panel
APS Panel: Hexagonal Phase Phospholipid	APS Panel
APS Panel: Cardiolipin IgG/IgM	APS Panel
APS Panel: Beta-2 Glycoprotien I Ab, IgG/IgM	APS Panel
Vitamin D	Fertility panel
Fetal tissue Karyotyping	Hereditary/genetics
NxGen	Hereditary/genetics
Thyroid Panel	Fertility panel
Parvovirus B19 IgG/IgM	Viral
Cytomegalovirus (CMV) IgG/IgM	Viral
Hemoglobin A1C	RPL Panel
RPR	Viral
SARS-COV-2 Antibodies	Viral
FSH	Fertility panel
AMH	Fertility panel
LH	Fertility panel

There are more tests that can be done for immune issues and also anatomical. For me they didn't see a reason to pursue those, but there are other women here who have looked into those and have a lot of information on it. I'm a "more information/data the better" person, so I'm usually in favor of getting tests, particularly if they're not invasive. That said, it's really common for these tests to find nothing wrong, which is frustrating in and of itself.

bumblebee0210 · October 2020

@akoros-- this is SUPER helpful, thank you. And I realized after I asked that your losses were later, so it makes more sense that you went via MFM. It was lucky in a way that I was seeing the MFMs for the twins anyway, so I got to ask them about what they thought about my losses in general and they had basically the same opinion as my doc, so at least it was like a drive-by second opinion.

I am sorry you find yourself here too, especially after trying so long. There is bad luck and then there is just... I don't know. A sh*t deal. Thank you for your help and info on this.

Kenneylynn3 · October 2020

Introduce yourself and anything you think is important:4 in Nov 2011, June 2012, August 2013 and August 2020. Missed miscarriage, missed miscarriage, 2nd tri loss due to clot in umbilical cord, and miscarriage respectively.

Status: WTO (finally!)

How are things going? They are going. Seem to be progressing as we aren't benched.

What is something that you are struggling with and/or what is going well? Things seem to be on track for this cycle (contacted the donor, just hoping I'm going to ovulate when I'm supposed to...)

Any testing coming up/any recent results? No

Questions? No

GTKY: Any Halloween plans? *TW LC*

We bought a house in May in a nicer neighborhood. My DW and I grew up in the mountains where you had to drive house to house. My nieces live in the same area, so they are coming up to trick or treat in our neighborhood. We are excited to finally have a chance to get trick or treaters.

fitzfizz · October 2020

Introduce yourself and anything you think is important: number of loss(es), when you had the loss(es), diagnosis/conditions surrounding loss, etc. One loss, TFMR at 22 weeks in June 2020 for non-viable brain malformation. Now known to be due to identified genetic mutation with 2-5% risk of recurrence.

Status: WTO and finally off the bench!

How are things going? Feeling optimistic at the moment. The waiting for months for test results was frustrating, and it is scary to know this could happen again, but at least we have something we can test for. I really feel for everyone being told it is just bad luck.

What is something that you are struggling with and/or what is going well? Agree with previous sentiments re: “products of conception.” I realize my situation is a bit different as I was pretty far along, but I hate this term so much and I don’t think it is appropriate for a wanted and loved pregnancy. I hate that the lab refers to testing of the “tissue.” Although it still makes me sad to think about her, I liked that the genetic counselor asked us for the baby’s name and referred to her by name for the rest of the visit. She also updated the test results with her name before sending them which I appreciated.

Any testing coming up/any recent results? In short, results showed 2 mutations, both of which were previously unknown. One that almost certainly caused the problem and has 2-5% recurrence risk. The other has a 50% chance of recurrence but hopefully means nothing. We are currently waiting on additional family testing that will hopefully confirm that the second mutation means nothing so we can stop worrying about it.

Questions? Just out of curiosity since I often wonder if we did the right thing by pushing for all of the testing, but if it were an option, would you (anyone who wants to answer) rather know there was a risk of recurrence but have it known, or just be told it was bad luck and unknown?

GTKY: Any Halloween plans? Small (6 people) get together for dinner and drinks.

@bumblebee0210 This is by no means my area of expertise, but if you were able to get to 8.5 weeks along, I would think egg quality really isn’t the problem. Basically my understanding is that egg quality has more to do with whether it is able to fertilize, divide, and implant. With a loss later than 5ish weeks egg quality is less of an issue. Given that you have been able to carry a pregnancy to term, that also makes issues with your body less likely. A fetal demise in the later first trimester and beyond typically has more to do with a developmental problem in the fetus, more often genetic than anything else. I’m not sure how much that helps with knowing what to test, just my general understanding of why losses typically happen at different stages. Basically, I second @akoros recommendation to consider meeting with genetic counselor and doing the hereditary/genetic testing if it is something affordable for you.

@akoros For what it is worth, I feel like being able to talk about it with friends and family did help. It does change some relationships though, people treat you a bit differently.

@Kenneylynn3 Yay for finally being WTO and not benched! I was also very excited for trick or treating after we bought our current house. So cute seeing the costumes!

bumblebee0210 · October 2020

@fitzfizz That makes sense, and is reassuring. We ideally want more than two kids (somehow that feels greedy to say on this board, but it's true), so the idea of diminishing egg quality was really scary to me. The truth is, the analytical part of me knows that they are likely right that this is bad luck. I think the DOR tests are easy to do, and just feel like doing something for me, and if they come back ok, then at least I will feel like we have enough time to decide what to do next, and not like rush into IVF to get as many eggs as possible before they are gone.

I may decide to see a genetic counselor at some point-- we do have really good insurance so it's all covered. I actually had an appointment to see one for testing the twins (because everything is more complicated with twins!), and my doctor offered to send me even with y first because my husband and I are both part french canadian, which are at higher risk for genetic issues (though both of us are less than half, and have no family history).

Right now I kind fo feel like we are just going to spend the next few months trying, and that will either lead to a healthy pregnancy (yay), another loss (straight to RE for full workup), or no pregnancy in ~6 months (also straight to RE for full workup), so at least it sort of feels like I have a plan, which is helpful.

Also-- to answer your question-- that is tough. I am a researcher by trade so I ALWAYS want to know more, but in this process I've realized statistics are only so helpful. I conceived identical twins! That is very unlikely, but when it happens to you it matters less... I think if there was nothing I could do, maybe I would not want to know?

@Kenneylynn3 Yay for being off the bench! It seems like all of us are kind of in that boat right now (though I never really benched myself-- the MFMs gave me the "as soon as you are emotionally ready" speech at the D&G, which I took as a green light). All of the things crossed that it will be a short stay in ttc limbo.

Kenneylynn3 · October 2020

@bumblebee0210 so excited that we all seem to be "off the bench"! As far as your questions go, I don't have any insight. I have had three early losses and one later loss, but I'm not categorized as RPL. I have only been offered testing for the later loss and no testing for myself. Seems like it's just bad luck for me according to the doctors. I do see mfm for unrelated health reasons. There are many times I have wishes I could just see a midwife.

@akoros it's been years for me, and I still find those milestones hard. Thinking of you as those approach and the holidays coming up.

@fitzfizz I feel like I would rather know. Then we could make an informed decision on our next steps.

bumblebee0210 · October 2020

@fitzfizz. One more technical question: I think my thought on "egg quality" (which might also be too vague a term to be useful), is that trisomies and other chromosomal imbalances increase with age, which would in my mind indicate that they can be at least in part due to a decrease in egg quality. So obviously that is a genetic factor, but it isn't an inherited genetic factor, but rather an issue with the DNA of the egg/sperm/embryo itself. I guess a simpler way to put it would be that I am worried that although I am 33 I have the eggs of a 40-year-old, and thus am more likely to miscarry, but am also capable of having a healthy child. The thing I don't know is whether FSH/LH/Estraditol etc will actually tell me anything about that.

keikilove · October 2020

Thinking of all of you today, and everyone who is or has been part of our group but isn’t active today. Thinking of all our sweet little babies, and praying that their spirits will come back to join our families earthside when they are ready.💗💗💗

fitzfizz · October 2020

@keikilove ❤️

inthewoods23 · October 2020

Guess I'll be bumping around in here for a while.

Introduce yourself and anything you think is important: MC at 8 weeks, progesterone had been super low for 2 weeks; no testing to be done so just in wait mode before trying again

Status: WFAF

How are things going? Not bad actually

What is something that you are struggling with and/or what is going well? Yesterday I realized I might struggle again at Thanksgiving. It's when we would have announced 😢. What is going well though is the bleeding. Seems to have already stopped. Passed some tissue again yesterday so hopefully everything is cleared out. I'm glad the worst of it happened so quickly.

Any testing coming up/any recent results? I followed up with the nurse by phone earlier and she said the OB would like to track my HCG down to zero so I'm supposed to go in sometime this week for that and then go in 2 weeks later until it is 0. I'm thinking it's pretty low already.

Questions? Just curious what everyone's experience has been with their cycles returning after MC. Kinda normal? Totally different? First one come at a regular time or delayed?

GTKY: Any Halloween plans? We'll just be home and have Yoohoo to pass out to anyone that does decide to go out and T or T in our neighborhood. I've heard it's going to be in the 50s so at least there won't be snow this year!

fitzfizz · October 2020

@inthewoods23 I’m sad that you find yourself in this thread. Luckily overall it doesn’t look like there are many of us left here. For me, after the loss it took 3 weeks to stop bleeding and another 3 before I had a normal CD1. My loss was at 22 weeks and I had a D&E though, so I don’t think it would be the same for a natural miscarriage. As a random interesting fact though, before the pregnancy I was always 1-2 days behind someone else here, and now I am still 1-2 days behind that same person so I think it went back to the same predicted time even though I’m not sure why that would happen.

nwshay · October 2020

TW- child mentioned

.

Hey all! I've posted on the intro thread and WTO/TWW before seeing this thread. I had a CP in 2015, a miscarriage (blighted ovum) in 2016, a live birth in 2017, and then a miscarriage due to unknown causes this time last year. The last one was very jarring. I found out I was pregnant and immediately had constant bleeding, and very heavy a lot of the time. I was DX with a subchorionic hematoma. I was in urgent care at least three times with heavy bleeding and was told each time that the heart rate was fine and I was OK. Then I fainted and slammed hard into our tile floor (6 months later I was DX with epilepsy but thats a much longer story) I later had a miscarriage but it was never confirmed why it happened. I had to go through two rounds of Misoprostal, still had at least two months of bleeding and then had to have a d&c. After I was dx with epilepsy my neurologist wanted me to wait until my medication was on track before I could TTC, and we started again in about April I think. I were NTNP at first, but I started tracking the last couple of months.

Status:WTO

How are things going? Good! Slow, but I'm trying not to get too ahead of myself.

What is something that you are struggling with and/or what is going well? I just keep thinking about how large my kids age gap will be, but I know that's really really silly. I'm lucky that I have my daughter so I need to stop stressing about a second.

Any testing coming up/any recent results? Kind of unrelated in a way, but now that I'm WTO my neurologist wants me to get a blood draw to see how much medication is in my system. It will help for when I am pregnant because I guess he will have to use it as a baseline to increase/decrease my meds because in certain times during pregnancy my body will absorb the medication differently, so we need to check regularly to prevent seizures (or something like that... I'm no doctor. . Hahaha)

Questions? Not right now...

GTKY: Any Halloween plans? We're trying to figure it out. We're trying to stay put, and everything on our island had been cancelled, but we want to do something fun for our daughter... We shall see

Edited to fix typos

fitzfizz · October 2020

Today was my due date. I took the day off work and it turned out I would have been off anyway because we got hit by a hurricane and spent the whole day without power or internet. This led to me having way too much time to think with no distractions and a whole lot of crying. I got out my box of her things and went fully down the grief rabbit hole. Sometimes I feel like I can still feel her moving, but then I remember she is gone and it makes it so much worse. Today was a really hard day for me. The fact that it was CD2 probably didn’t help.

I was supposed to be having a baby today. Instead I’m sitting here hoping the grocery store is open tomorrow because I am out of tampons.

Reading through the weekly randoms today I remember how many people feel the same way. I hate that there are so many of us who know how this feels. I know not many people are posting in this board lately, but I know that some of you are reading this and it makes me feel like I am not alone.

Hopefully tomorrow will be a better day. There is nothing to do but move forward!

capnjackharkness · October 2020

@fitzfizz Ugh, sorry! Passing your due date is always extremely difficult. Actually, a lot of times there's more anxiety leading up to it, than the day itself. Although it seems like you're having a particularly rough one.

I usually find it goes a bit better if I keep myself BUSY. Sometimes I work and throw myself into work projects. If I take the day off, I try to make sure I have a super busy day (even if it's working on a lot of organizing or a specific craft project I really want to complete). Having no power and internet probably kicked you in the butt.

I hope you have a better day tomorrow!

acleverusername · October 2020

@fitzfizz

Image: https://us.v-cdn.net/5020794/uploads/editor/yv/cbkq66ny4dkd.gif

inthewoods23 · October 2020

@fitzfizz sending you lots of love on this difficult day ❤️❤️

keikilove · October 2020

@fitzfizz Oh, I’m so sorry you had such a tough day today.😢 Due dates are very difficult milestones. You have every right to spend time with her things and allow yourself to grieve deeply. Sending you so much love and wrapping you in virtual hugs, friend. I hope tomorrow is a better day.❤️

Image: https://us.v-cdn.net/5020794/uploads/editor/7x/fwql706hkjuj.gif

kiki047 · October 2020

@fitzfizz dropping in here to send you some extra love today too. ❤️ I’m so sorry. Sounds like some pathetic fallacy there as the skies are also crying for you today. Hope you get your power back soon and everyone is safe.

Want a personalized experience?

TTCAL October 2020

Re: TTCAL October 2020

Choose Another Board

Search Boards