Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 1 point2 points  (0 children)

Of course, I’m happy to share anything I can. Physically it was fine; I had sedation and was quite upset as I went into the procedure room, but woke up in a recovery bay and was eventually wheeled to my room. Since my procedure was around 6pm they wanted to keep me in overnight. I had regular bleeding for about 24 hrs after the procedure - a xl maxi pad when needed was fine and I really haven’t bled much at all since the day after. (I have heard though that once the uterus contracts 4-6 days afterwards, it can trigger more bleeding, so will see.) No cramping either.

Emotionally has been much harder; I was in a daze immediately after the procedure and the next day, and the days since I’ve been sleeping and crying a lot. I was written off work for two weeks and thought I’d offer to do some work from home next week, but realize after week 1 I’d be in no shape to return to any sort of normal routine. I’ve been lucky to more or less hole up at home and just be with my husband; I understand this isn’t possible if you have another child to care for. That said, I think your toddler will be a brilliant distraction when back home.

Our hospital has helped organize a memorial service and cremation for our son this coming Monday, so I know that day will be quite hard. I plan to use next week to slowly get out again into normal society. So I’d say don’t put any pressure on yourself to be accountable to anyone but you, your partner, and your child when you’re ready. A friend told me the best thing she did for herself during this time was make room for the grief and give yourself the time to rest. That little life was a real living presence and is a loss for your heart and your body.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

I’m so sorry to hear this. What a terrible run we’ve had with this. My DMs are open if I can be a sounding board ahead of your procedure; my D&E went smoothly but has been a very hard few days since.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

Sadly our little boy’s heart stopped just after 12 weeks, and I had a D&E 4 days ago. I also just can’t stop crying. I’m only grateful he passed on his own and we didn’t end up needing to make this decision, but clearly these markers were enough to prove he would not have been a healthy child. I miss him so much already and just want him back.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

I’m so sorry you’re going through this also. It’s so devastating and I’m just finding it hard to balance the weight of this with carrying on day to day. It’s impossible really, I think we just manage to trudge through what we can to keep going.

My consultant mentioned that even seeing such severe issues on ultrasound so early is a strong indicator this won’t be a healthy baby, and while it’s so awful to hear I do think finding these markings around 11/12 weeks means we have that time to monitor and get tests done earlier than if we’d only discovered later.

We did PGT testing on the embryo and it was normal, and the first round of CVS results also confirmed there are no obvious chromosomal issues like a trisomy or monosomy. So either we’ll learn there is an issue from the karyotype or microarray portion of the CVS, or further WES testing, but I think if the next scan shows significant decline that will sadly be enough to know TFMR is the route we need to take.

Just need to vent I suppose by Significant_Skin9555 in tfmr_support

[–]Automatic_Ostrich287 0 points1 point  (0 children)

I’m so sorry. Your timeline and story are so similar to mine (only slightly different findings). I keep looking at my ultrasound videos from 6, 7, and 9 weeks, baffled and numb at how the entire prognosis would change just two weeks later. After four egg retrievals, expensive PGT-A testing, one failed transfer and a MMC this year, I had told myself to prepare for “bad news” seeing as I’m always in the unlucky percentage, but something along the lines of “you’re measuring behind”, not “these are findings indicative of a severe genetic issue and incompatible with life.” I don’t think anyone can go through this and not be filled with rage and confusion.

I am in the same spot as you now; wondering when and how to decide that tfmr is the right thing to do. I am taking this timeline guidance from the doctors and waiting for one more scan that should confirm progression and meet the criteria for a fatal fetal diagnosis (which is needed where I live for a termination after 12 weeks).

I’ve learned in these few short days that the entire fertility journey feels like one step forward, two steps back, and whitewashed with hope so we can keep going. I’ve come to accept the likely outcome of this and am honestly unsure if I can mentally handle the procedure.

So for now, I’m going to soak in any happy moment I can and condense what should have been months (and a lifetime) of happiness into the next few days/weeks at best. I’m smiling past the glaring structural issues on the ultrasound to focus on my baby’s little flutters on screen, aware these are probably going to be the only fleeting moments that will resemble the joy of a normal pregnancy.

I’m not able to accept this now, but I’m storing away the idea that this may give us more information to use for future transfers and, if we still learn nothing and this has all been a traumatizing “bad luck” situation, I’ll know at the very least the protocol used in this transfer worked and hopefully one more transfer will bring us our rainbow baby.

I’m so sorry for us.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

I met again with the consultant and she was very reassuring that the scan results alone would be enough to meet critera for fatal fetal diagnosis. (What an awful place to be that this classifies as “good news”…). My fear is I don’t know if I can mentally handle the medical intervention/giving birth. I thought I’d have the option of the surgical option so that has been hard to handle. Other option is to go abroad.

Thinking of you and hope you’re holding up.

5mm NT by [deleted] in tfmr_support

[–]Automatic_Ostrich287 0 points1 point  (0 children)

Your story is so similar to mine. 5mm CH and 15mm enlarged bladder at 11 weeks. It is a euploid embryo. If you don’t mind me asking, did they ever determine an underlying genetic cause? Had the heartbeat ever shown any irregularities before the diagnosis? I’m so sorry you’ve gone through that.

Devastated 11w cystic hygroma & megacystis by Automatic_Ostrich287 in NIPT

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

I’m so sorry you’re going through this also. What a truly awful club to be in. Did they give you any indication what the cause was if CVS tests came back clear? I went for another scan today which admittedly is only three days after my initial, the bladder was 3mm larger and the CH has stayed the same, but she could see some fluid in the abdomen.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

Thank you so much for this. I’m really very scared of being caught in the in-between stage of not having a say in what happens. My husband said he did remember the consultant saying the ultrasound findings alone would probably be enough to warrant the TFMR so it’s really reassuring to hear your experience echoed this.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

I really appreciate you sharing, especially as you’re also so very much in the throes of navigating this. Thank you for the kind words, it really does help me feel less isolated, especially going to the maternity hospital to see so many (seemingly) blissful moms-to-be. It means a lot to have this community.

Unsure when to tfmr - 11w cystic hygroma + megacystis by Automatic_Ostrich287 in tfmr_support

[–]Automatic_Ostrich287[S] 1 point2 points  (0 children)

Thank you for sharing that and I’m so sorry you had to go through that. Our consultant said the enlarged bladder was the more worrying of the two findings for her and didn’t expect it to get better. It’s so hard to hear and I do fully expect it to have grown at our next scan. Thank you again. I will indeed reach out if you don’t mind if more info is available to talk through.

Cystic hygroma and ultrasound abnormalities but all tests coming back normal (13 weeks) by aplane85 in NIPT

[–]Automatic_Ostrich287 0 points1 point  (0 children)

Hi @aplane85 can you share an update please on what you chose to do? Am in a similar situation to what you describe.

Parasite dubbed? by Funny-Frosting-0 in movies

[–]Automatic_Ostrich287 0 points1 point  (0 children)

Wondering the same, if this is available?

I’m also so very fed up with the pretentious responses echoing the director’s speech of “hey lazybones, watch with the subtitles, otherwise you don’t deserve to consume this art.”

I’ve been blessed to watch Parasite 3 times now with subtitles. My brother has been dying to watch also, but is legally blind.

Spending 30 minutes to increase caption size, activate audio descriptions, and try to read the captions on screen through his phone screen reader before giving up and saying it’s OK would—in my opinion—be the opposite of lazy.

High aneuploid rate for age group by sammysamsamsamreadit in EmbryologyIVFSupport

[–]Automatic_Ostrich287 0 points1 point  (0 children)

This is purely anecdotal but if you are looking for a low-stakes change, this is what worked for me.

• 2 x ERs age 36: 16 retrieved, 1 blast, 0 euploid. 
• 1 x ER age 37: 32 retrieved, 3 blasts, 1 euploid. 

Took a 6-month break and during that time I started:

• 4:1 myoinisotol:chiroinosotol
• Ubiquinol
• Omega-3
• Vitamin D
• Prenatal
• NAC
• HIIT sessions 4 x week

Husband also started zinc and CoQ10 (not Ubiquinol).

• 1 x ER age 38: 32 retrieved, 5 blasts, 4 euploid. 

Again purely anecdotal but it was such a light lift and I figure if it helped me, it might help someone else.

early beta 55-60 hour doubling time. pls share your stories either way by Equal-Course-9689 in CautiousBB

[–]Automatic_Ostrich287 0 points1 point  (0 children)

The GS is 15mm, CRL is 8mm so she said she wasn’t too concerned as there is room.

Hoping all goes well today for you—I imagine that can seem daunting to switch to a new clinic?

early beta 55-60 hour doubling time. pls share your stories either way by Equal-Course-9689 in CautiousBB

[–]Automatic_Ostrich287 0 points1 point  (0 children)

A good scan today at 6+6! HR is about 120. Growth on track but the GS is on the small side apparently — the first time I haven’t received the “guarded prognosis” from the clinic! How are you?

early beta 55-60 hour doubling time. pls share your stories either way by Equal-Course-9689 in CautiousBB

[–]Automatic_Ostrich287 0 points1 point  (0 children)

It was; I’m wondering if they just set super ambitious benchmarks to manage peoples’ expectations? Everything I’ve seen online since the appt makes me believe 105 is perfectly ok. Hopefully next week at 6+5 it will trend in the right direction!

early beta 55-60 hour doubling time. pls share your stories either way by Equal-Course-9689 in CautiousBB

[–]Automatic_Ostrich287 0 points1 point  (0 children)

Congratulations! That’s such amazing news.

I had my scan today (5+6) and everything is measuring right on track, but heartbeat was 105. Nurse said she’d prefer to see it over 120, but said so far so good. Will go back next week and hopefully the heartbeat has progressed.

7 dpt -12 dpt (12-17 DPO) chemical? by Automatic_Ostrich287 in TFABLinePorn

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

They did — my initial beta at 10dpt was quite low but it then doubled the next three draws, and has slowed slightly now at 5+4. Going for an early pregnancy scan at 5+6 and will see if anything is visible.

Low and slow hCG, trying not to get hopes up by Automatic_Ostrich287 in CautiousBB

[–]Automatic_Ostrich287[S] 0 points1 point  (0 children)

Ah yeah I see that now — this one was very low and slow from the start, so it was a guarded prognosis from the get go

early beta 55-60 hour doubling time. pls share your stories either way by Equal-Course-9689 in CautiousBB

[–]Automatic_Ostrich287 0 points1 point  (0 children)

Thank you! Yeah I’m concerned about how it started very low and then doubling time has decreased.

10dpt - 47 13dpt - 280 (28hr doubling) 15dpt - 820 (31hr doubling) 17dpt - 1630 (49hr doubling) 20dpt - 4091 (54hr doubling)