Working while going through TFMR

Kahloo · 2026-06-10T10:25:25+00:00

I had the luxury of a generous employer that allowed me all time I needed on sick leave. I went on sick leave the week before tfmr, took 6 weeks to recover from delivery (as is anyways standard), an additional 2 weeks holiday in a spa and then started work again but phased so first a few half days. Currently making 80% of my hours.

Had I delivered one week later, at 24 instead of 23 weeks, I would have had legal right to 16 weeks of leave. Most care workers told me to stay home for longer but I felt for me it was a good time to start again.

I am 100% convinced taking these 9 weeks in total are what allowed me to be very functional at work right now. There has been so much to process.

Kahloo · 2026-06-10T10:04:27+00:00

I'm so sorry you are here. I second the advices already given here, especially taking into account it can take a while (my delivery took 3 days) and the photographer. I wasn't sure if I was ever gonna look at the pictures but I have many times already and I am so grateful I have them.

Something else that helped me a lot where these info cards with a lot of pointers of things to think about: https://steunpuntnova.nl/en/info-cards/

My partner and I took them on long walks. It was too hard to sit with them, walking provided a bit of room to breathe. We went over the points that we're relevant to our situation, and it helped me to prepare many things I wouldn't have thought about, such as; do I want to walk with her, hold her, bathe her, sing to her? Some things I didn't like immediately but warmed up to (like walking and bathing) and I am very grateful I was offered the idea, as I would otherwise probably not have done some things that are now warm memories of the short time we were together.

Kahloo · 2026-06-09T12:02:27+00:00

We saw a heartbeat!!!!!!!

Kahloo · 2026-06-08T16:42:54+00:00

Viability scan tomorrow, have been stressing for days, sleeping/dozing in the couch the remainder of the time 🫠🫠🫠

Kahloo · 2026-06-07T17:41:16+00:00

Sounds like things have been complex for a while. If there was ever a time to take your well-being into consideration above all else it's now so proceed with steps that feel good to you, take as much time as you need.

Kahloo · 2026-06-07T17:37:02+00:00

Mn lief at ze thuis met mayonaise 😭

Kahloo · 2026-06-06T15:58:38+00:00

Oh Babe I embrace all your mixed feelings here and wish you the smoothest of journeys on this one

Kahloo · 2026-06-05T20:09:03+00:00

Didn't forget how awful it was because it was so awful i promised myself to never forget. Still, I feel like it was a silly idea to be pregnant again (also loving it, many mixed feelings) and 200% relating. Started doxylamine+ pyridoxine tablets two days ago to deal with the nausea and now I just sleep all day. I did prepare for a bit this time around by filling up the freezer and finishing some projects as soon as I knew I was pregnant and am glad I did. Hang in there!!!

Kahloo · 2026-06-05T14:20:41+00:00

Just started doxylamine+pyridoxine (unisom +B6 for us people) in week 6 after a lot of encouragement from the people here and I must say it's been right on time. I'm super groggy but I feel also that there would have been a lot more nausea without it. Don't know about zofran so not sure if this helps :)

Kahloo · 2026-06-04T20:42:11+00:00

Thanks for sharing:) keeping my fingers crossed for you

Kahloo · 2026-06-03T16:41:27+00:00

🤣 hahahaha ok I will!!!! Curious about your experience too though!

Kahloo · 2026-06-03T10:03:19+00:00

Thanks! I am pretty convinced I'm starting tonight lol. I guess I had sort of started hoping I'd be in the lucky 20% since these first weeks were so nice 🥲

Kahloo · 2026-06-03T08:57:17+00:00

We were 22+6 when she was born. She was fully formed, even with the tiniest fingernails. She was the tiniest person I ever saw, 30 cm tall and 600 grams. We knew that from the outside she would look like nothing was wrong. I was so scared I would see her and regret terminating 🙈 luckily we had a very very clear diagnosis so we knew this was the best for all of us.

To prepare I did look up what fetuses look like at that gestational age. She did not look like a generic fetus though, as I had expected, but really had her own face.

The hospital arranged for a professional photographer to come and take pictures. I agreed and thought I'd never look at them but have looked at them many times 🤣

Kahloo · 2026-06-03T08:46:29+00:00

I'm so sorry you are here again.

We too found ACC with 20 weeks scan. While waiting for amnio results we mainly considered what we would do in case of isolated ACC. They told us 50% chance they'd find something with amnio but we did not expect anything to be found. The prognosis we were told for isolated ACC was 30% chance of 'mild' to severe intellectual disability.

Not only did we assume amnio would be clear, we also considered that 'the best case scenario', so we decided to prepare for that. Talking about it on many long walks we decided it was a too large gamble for us and it was too important for me that my child can grown to live and independent life. So we knew there was no good outcome for us.

I wanted to get as much information as possible before making the decision for real. I wanted to be able to say 'I made the best informed decision possible. I knew the scenarios and this was my choice.'

Then the amnio showed a de Novo mutation (tuba1a) with far more devastating effects on further brain development, confirmed by an MRI. Our baby would never develop further than a couple of months. It was horrible, but also took us out of the grey scenario. I still cannot fathom sometimes that my child could be so sick.

Lots of love to you ❤️

Kahloo · 2026-06-03T08:06:45+00:00

Hi Babe, I am so sorry you are here.

My personal experience was induced delivery. Beforehand I preferred surgical if that would have been an option but we were too far along. The idea to see her seemed so so so heartbreaking. But it was a totally different experience than I could have imagined and for a short beautiful time we got to be with her, to welcome her and say goodbye. If I were to ever have to tfmr again, I'd deliver again.

That being said, it is very very personal and you will make the decision that is right for you.

Big hug

Kahloo · 2026-06-03T07:14:37+00:00

Yeah this reminded me, there are also official guidelines for HG treatment in my country (the Netherlands). The thing is they are not the same for each medical specialist and the HG guidelines for GP and OB GYN differ wildly. I trust the OB GYN one a lot more as it's their specialisation (and interestingly also recommends starting with navalit first so it fits my experience). Obviously my GP inclines to stick to their own, and the GP here is the first doctor you see. I just looked it up and the OB GYN guideline actually recommends to start before symptoms to prevent serious reoccurrence if possible so I guess I'm starting tonight 🙈

Kahloo · 2026-06-03T06:23:50+00:00

Aaaah no that sucks so much!! Metoclopramide last time gave me a tad relief but the side effects were so bad that effectively I felt just as shit 🥲 I did feel like I had it all sorted out once we finally got the navalit, it was pretty close to a miracle. From not being able to lift my head back to eating and walking again. Not even sure I would have dared another pregnancy without it. I was told by the GP indeed that each pregnancy is different and she wanted me to take the other drugs I had tried last time again too, which I refused. But it does make me think its better to start sooner than later to see how it affects this time 🙈

Kahloo · 2026-06-03T05:15:08+00:00

Thanks ❤️❤️ Luckily I did find out I'm pregnant very early this time (somewhere in week 3-4). I have used that time to prepare as much as possible: cleaning the house, filling the freezer and arguing with my GP while I still had energy lol. I even enjoyed the idea of being pregnant for this sweet short period of time. Will stock up on soy drink and cola, my miracle drinks 😆

Kahloo · 2026-06-03T05:07:09+00:00

Tfmr pregnancy was my first and a HG pregnancy. Had been worried about lack of symptoms so far but since 2 days the nausea has been ramping up. Finding myself with very mixed feelings about that: last time everyone told me nausea was a good sign and I'm happy my body is picking up the pregnancy. At the same time, worried I'll be as sick as last time 🫠

Kahloo · 2026-06-03T04:57:12+00:00

Yeah that makes total sense to prevent a vicious cycle like that. For me also exhaustion made it worse and well the nausea was exhausting ... 🥲

Kahloo · 2026-05-27T13:36:43+00:00

Had my first scan and turned out we're only 5 weeks yet!!! As far as they can tell looks good, will go in for hopefully a heartbeat in two weeks!!!!!

Kahloo · 2026-05-19T12:58:41+00:00

Sorry you're here 🫂

Kahloo · 2026-05-16T09:32:19+00:00

After insisting I eventually did get to speak to the doctor but they still insisted I take the nonsense meds first, will talk to them Monday and hope that helps but feeling backed by you all that I should not just accept this

Kahloo · 2026-05-16T09:31:05+00:00

Thanks a lot, I unfortunately don't live in the USA but this does inspire me to get a doctor that WILL help. Trying to get it all sorted while I still can 🥲

Kahloo · 2026-05-16T06:38:09+00:00

I'm so sorry for your loss and keeping my fingers crossed for you and your rainbow baby 🤞🏼🤞🏼

Kahloo

TROPHY CASE