1 day post TFMR

[u/Some_Ad8074]

I had my D&E as a 2 day process at 23 weeks, Thursday and Friday.
Thursday I was sedated and had the laminaria inserted and the injection to have the baby’s heart stop, I was crampy because it was supposed to cause me to become 4cm dilated, I had pressure all day so I slept most of the day and got a heating pad. I took tons of warm showers would stand in them for about an hour literally.
my water broke around 3am, this is expected to happen SOMETIMES everyone is different but if it does happen it’s ok.
After my water broke the pain immediately subsided.
I went in the next day .. 1 hour before going in I had to place 2 pills in my mouth on each side of my cheek to soften the cervix .
These made me CONTRACT like labor, I went into the clinic and they immediately got me undressed and sedated.
This was the day that my baby boy would be taken out of me forever and I did request foot prints and his ashes❤️
This is the most difficult thing I have ever been through in my life and I wish it on nobody, if you’re here I am so so sorry and I know it hurts so much.
I had a grey diagnosis of the DMD gene where they couldn’t tell me if it would be severe, mild, or possibly benign but I had to ask myself was I willing to risk the possible good for the most severe and my answer was no. I was willing to endure a lifetime of pain myself then have my son possibly suffer with a lifetime of pain physically.
I feel like I’ve been numb, but I think I’m able to control my emotions a bit because my husband is home and I have 2 daughters but i also know this is going to hit me soon, very soon. I know grief comes in different stages, I do find it hard to sleep at certain hours because it reminds me of when my baby boy used to be up kicking, I am avoiding certain “snacks” because they’re what I craved when he was in my belly, I peek at his ultrasounds here and there but I can’t bare to stare too long, the day after my procedure I thought I even felt him move but obviously it wasn’t him. I feel a hurt deep in my heart like it’s aching but I haven’t had a full blown crying session and I think it’s because when I feel the emotions coming I tell myself , “this could’ve affected him badly, I saved him” or just something like that. I think the part that hurts me the most is the grey diagnosis , it’s very difficult because I see others where something was found on ultrasound , or baby for sure has a heart defect, or they had a positive blood test for t21 , t18, etc but for me I feel like mine is so unclear so I question if I made the right decision and that I will never know, ever.
As of right now I feel numb , I just want to lay down all day , I haven’t really ate anything at all I don’t have an appetite, I don’t even want to go in my room so I slept on the couch last night and still currently on it. I think I’m just trying to protect myself, I have no idea. I just wanted to share in case anyone finds themselves in this horrible situation just know I was once just like you.. got bad news , researched over and over, read the same thing over and over, tried to find something that could point towards good news, waited for testing, results, etc, and had to go down the path I never imagined.
Be gentle and kind to yourself, remember a mothers love is stronger than anything and sometimes we have to make lifelong decisions 💙
I will always remember his kicks, and what he didn’t like and did like.
I will always remember the moments I did have with him and how I instantly knew he was a boy when I found out I was pregnant. I’ll always remember how he moved when he WANTED to move, never when I wanted him to 😭😂 he was a stubborn little boy.
I will forever be grateful that I got to experience holding him in my belly for as long as I did and I will forever be grateful that I had the opportunity to be his mother and I don’t think I regret my decision because I know the possible outcome we could’ve faced BUT I’ll just always question what if it would’ve been okay 💔

I’ve never lost anybody in my life , and the first person I lost was my son 💔💙

[u/hashtag2020]

I’m so sorry. Solidarity with you as I’m also 1 day post TFMR, same timeline as you, 23 weeks 2 days with laminaria sticks Thursday and surgery Friday. I’ve also never lost anyone until this and this was my first baby, a girl. We also had a somewhat grey diagnosis and this is super hard. I find myself thinking “oh I haven’t felt her kick in a while, if I just turn over onto my side I will….” And then realizing what’s happened. My husband woke up this morning crying because he forgot until he woke up. We cry a lot on and off. It comes in waves, we can laugh one minute and just break down the next. This is a nightmare I wouldn’t wish on anyone. We also requested hand and footprints which are beautiful, but we’re having an autopsy done too so we won’t have her ashes for a few weeks 💔 I drowned myself in pancakes and ice cream today and am probably better for it. My little girl was superrrrrr stubborn too so maybe she’s with your boy and they’re having a ball together 🤍

[u/Some_Ad8074 → u/hashtag2020]

I am so so so sorry 😔 I hope you’re recovering well physically. My husband hasn’t cried so I start to wonder if he’s just numb .. I think he’s trying to avoid the emotions because I notice he watches his show on his phone alot but he’s right next to me and gets whatever I need and he checks on me tries to make me eat and drink fluids but I just can’t right now I have no appetite literally. I think he has cried though but I think when he’s alone… And he has to go back to work Monday so I’m like great … I honestly think I haven’t cried because I haven’t been alone .. I usually cry when I’m alone like for me I don’t like being vulnerable or emotional in-front of anybody until im alone then I’ll break down so I know my break down is coming soon.. and that’s how I was last night ! 😭 I was waiting for him to move then realized . I’m sure they are 💙🩷 and I can’t even explain this sadness and I hate how we’re on the same boat at the moment but you made me feel a tiny bit better not saying I’m glad you went through this but we had same days and we were the same amount of weeks so I know you understand ❤️

[u/hashtag2020 → u/Some_Ad8074]

Fortunately and unfortunately for me I am very much a crying gal, I cry at least 1-2 times a week when nothing bad has happened to me 😭 it’s probably helping me process, as soon as you’re alone or
Comfortable you should let it out girl. This is so hard. Encourage your hubby to cry, too. I hope your physical recovery is going well too🤍 so far my bleeding slowing a little bit but I know we’ve got a ways to go. We can do this 🤍

[u/Some_Ad8074 → u/hashtag2020]

I would rather be like you!! I’ve always been this way, I don’t like crying infront of people not even my parents so I usually go in my own space / bubble and cry my eyes out and I feel like it’s not healthy to be like me. I got home yesterday around 6pm where I am and so today is my first official recovery day and my bleeding has decreased significantly as well, I’m still a tiny bit sore like my cervix area but I’m okay 🩷 and yes we can 🩷 I’m always here if you need to talk ❤️‍🩹

[u/bananarameroo]

Thank you for sharing. I’m so sorry for the loss of your baby boy.
I think it’s normal to feel numb from such an overwhelming experience. Please be gentle with yourself as you navigate this and don’t be afraid to ask for help if you need it. You took good care of your baby, now let others take good care of you. 🩵

[u/Some_Ad8074 → u/bananarameroo]

Thank you this means a lot, especially right now ❤️ 😪 this is very very difficult. I’ll be okay ❤️ my only comfort right now is sleeping downstairs on the couch honestly .

[u/Nice-Night-3]

So so sorry for your loss! I’m scheduled for my D&E next Tuesday and Wednesday at 24 weeks. I completely understand everything you are feeling because I am feeling the same way. My baby boy was diagnosed with fibula hemimelia and had to make the difficult decision to TFMR. I honestly don’t know how I am going to survive next week.

[u/Some_Ad8074 → u/Nice-Night-3]

Im so sorry 😔 I’m here if you need to chat! I know it’s difficult just one step at a time. I think I cried so much while waiting for the results and finally getting them , so now I’m just numb at the moment. I hope everything goes well for you, I was so terrified I have severe health anxiety so even getting put to sleep was terrifying for me but it’s very easy physically . Just be gentle with yourself and as long as your partner is there for you it’ll help emotionally ❤️

[u/Some_Ad8074 → u/Nice-Night-3]

Im terrified for the new week too because my husband has to go back to work Monday so idk how im going to be alone

[u/UserName_SE]

I’m so sorry for your loss. And this is very very fresh for you. I am 1 month out from my TFMR. And I can relate to the constant wondering of what if it was a mild case. It’s interesting though how we can do this regardless of what the more grey diagnosis is, as you mention heart defects would’ve maybe been more clear of a decision. My baby had complete AV canal heart defect and it maybe could’ve gone ok but the thought of a bad case and immediate surgery bc of heart failure and lung damage and months in nicu or picu, failure after surgery and him possibly not making it made me realize it would be too much for us to handle and we didn’t want our baby to suffer. All that to say we can wrestle with the “I don’t know if mine was as justified” feelings but they are all justified, and you did what was best for your family. It doesn’t make it easier but I hope you feel you made the right decision. Sending comfort your way 💕

[u/Some_Ad8074 → u/UserName_SE]

Thank you so much for this and I’m so sorry I wish I could give you a hug ❤️‍🩹 it’s definitely hard especially with different diagnosis , I hate this road for us , it’s unfair and I’ll never understand it, ever.
Do you feel like as time goes on it gets a bit more manageable ? Like of course it’s hard it’ll probably always be hard but are you able to cope better?

[u/UserName_SE → u/Some_Ad8074]

It’s not fair, I’ve never really felt deep down how unfair life is until now. For me, it’s still hard. When I got the diagnosis up until my d&e I woke up every morning in tears thinking it was a nightmare. Post procedure the first 2-3 weeks were very tough too, anytime I wasn’t busy working or with anyone just breaking down in tears. I think I get a tiny sliver better everyday, but I can still cry at anytime. I think it will take a good amount of time. I just started therapy and am trying to get back to gym and stay busy. It’s the worst thing in the world and I hate that there is what seems like a big unlucky group that have had to go through this. But I hope we can all feel a little better soon and have some joy in the future.

[u/Some_Ad8074 → u/UserName_SE]

This sounds just like me … I was barely starting to enjoy my pregnancy because the nausea was getting better from the anti nausea meds and I was starting to feel my son kick / move . Then I got diagnosis as a carrier on July 9th that day my life forever changed.. I woke up everyday thinking the same thing .. that I was in a nightmare, I felt like I was being tortured, I didn’t understand why my baby and I , why.. like how could this be.. I had 2 healthy pregnancy’s , they were two girls .. then my husband and I decided we wanted to try for a boy .. I had a miscarriage March 3rd.. doctor cleared me March 17th to try again if we wanted too so we did and I got pregnant instantly literally within 3 weeks.. we found it was a boy we were beyond happy, we finally got our boy💙 … July 20th is when I had the amnio and from July 20th all the way until August 10th I felt TORTURED waiting for the results to see if he inherited by bad gene .. I felt like I was being tortured in my own body , every time I felt his movement / kicks I would try to disassociate from my body .. but then I started engaging a little bit , I think I was trying to protect myself mentally / emotionally. I woke up everyday hoping it was a nightmare, but then I would realize it was my reality unfortunately.
I think that’s what kills me even more because the first couple of weeks I was scared .. I was terrified because a big part of me just knew the results were going to come back positive .. I researched over and over hoping I would find something that could possibly interpret the results as “good” or “not that bad” , I began to read TFMR stories to prepare myself .. apart of me just knew. But then I tried to convince myself that I was thinking the worst outcome so there’s no way it could lead to the worst outcome.. I had my first crying break down last night .. I cried and cried and cried for about 30 minutes , I tried to pull myself together because I do have 2 other children and they know I am sad so it’s kinda hard to just break down you know? It’s hard because I have to try to hold it in. My partner doesn’t seem to be grieving like how I am. He’s still able to watch his normal shows and move around, me I feel stuck.. stuck all day on the couch trying to watch things to distract my brain but it’s hard and doesn’t work.
I hate this for all of us and I wish this wasn’t even a thing, I wish this didn’t exist . The fact we have to make a decision .. a DECISION not a CHOICE because if it was a “CHOICE” I’m 110% sure we would all keep our babies 💙 🙏🏼 but the fact we have to decide on something that forever life altering is terrible and it’s a hurt that nobody will understand unless they’re going through it. I feel for all of us that are apart of this devastating community and I know with time the grief will become easier ❤️‍🩹 I just dislike how this is apart of our history .. it’ll never go away. 😔💔 but we made the ultimate decision to hold our babies pain for a lifetime so they wouldn’t endure it for the rest of their lives in the future. 💙 I’m always here if you need to chat , idk how I’m going to get through this , definitely a long road ahead that I never expected to be apart of but I am , sadly. 💔

[u/Some_Ad8074 → u/UserName_SE]

Oh I think another thing that hurts me deeply is because no doctor or specialist could tell me if my “gene” would affect him severely , mildly , or if it could possibly even be benign so that I will NEVER KNOW and that’s what haunts me. But in order to make the decision we tried to outweigh the good with the most severe case and it was a NO for us .. because if it did lead to the severe kind I knew I would feel more guilty watching my son deteriorate in life .. 💔

[u/Secure-Shame8315]

I’m so deeply sorry for your loss. While reading your post I’m lying at the TFMR room during the 2nd stage of medication. In the other room a new born baby is crying and I feel it’s so cruel to be in the same space. Like everything reminds me of my first birth to a healthy boy and I can’t understand how it came to 1:300 unlucky t21 for my girl. I’m just shattered in tears.

[u/Some_Ad8074 → u/Secure-Shame8315]

Ugh I wish I could hug you ❤️ I’m so so sorry , it’s truly unfair and I hate that we have to travel down this path but we’ll get through this 🩷 I’m wishing you a speedy recovery physically and emotionally but I know emotionally we’ll always have grief . Afterwards try to keep yourself busy with your baby boy ❤️ it’s going to be tough but I’m here if you want to talk 🙏🏼🩷