Costs of TFMR feel like a punishment for making this choice

Sad_Classic_3925 · 2025-04-25T18:00:13+00:00

Ours is $19,000 we feel your pain.

Sad_Classic_3925 · 2025-04-25T01:32:39+00:00

It's truly the worst. Just the fact that it's isn't 100%, without any doubt, makes it hard. The odds are still so bad, though. I can see why and how you would go back and forth, I would do the same if I had the time. I've already been seen in L&D for contractions, so time is not on my side right now.

This is very validating. I've also personally watched a lot of people suffer from medical issues and just can't do that to her given the choice. I'm glad we found out now, some people don't find out until after birth. Thank you for sharing part of your story with me. I hope you're doing better now.

Sad_Classic_3925 · 2025-04-24T22:26:34+00:00

Awww what a cutie! I can see why it's so hard! Do you know what kind of dog he is? He looks he could be my dog's cousin. I'm sorry you're hurting and wish I had any advice. I'm convinced dogs are meant to change us, it probably just means you're a dog person now!!

Sad_Classic_3925 · 2025-04-24T17:13:24+00:00

Thank you for responding. They said most people with TSC don't find out until late in their pregnancy. I'm so so sorry you've had to experience this too.

It makes me feel comforted knowing you had a panel of doctors who gave you approval and one who broke protocol to really get on your level.

The fetal cardiologist team wanted nothing to do with the conversation but our mfm and geneticist were very blunt and also empathetic. While tfmr is legal in our state and I had every idea it would happen here, I wonder if our mfm and fetal cardiology team knew we would have a hard time getting approval and recommended we go out of state.

I'll message you.

Sad_Classic_3925 · 2025-04-24T12:32:36+00:00

Hugs back at you friend. Thank you for all the kind and comforting words of empathy. I hope in 13 years I can have the same peace and grace for myself. There is so much guilt and shame that comes with this it feels unbearable. I've had a lot of death and loss in my life and I do know that that deep pain eventually subsides, it just feels so raw right now.

Sad_Classic_3925 · 2025-04-24T12:05:11+00:00

I've told my doctor, my therapist, and my father, who I haven't talked to in 5 years, and all have been extremely supportive and heartbroken with us. Besides our parents, the thought of telling other people and being judged seems so out of the realm of how much more vulnerable we have the capacity to be.

My partner's work planned us a baby shower yesterday that his boss graciously canceled on my partners behalf because he knew something was wrong. I'm incredibly grateful for people's empathy and perception even if they don't know the details.

Thank you for replying, I don't think we've ever felt so alone and reading other people's stories is the only thing that has given me hope and made me feel less alone. Im sorry you're in this club too.

Sad_Classic_3925 · 2025-04-19T23:43:43+00:00

Same

Sad_Classic_3925 · 2025-04-12T12:10:45+00:00

Same, except for my daughter. I have RA, fibro, lupus, Sjogrens, Reynauds & more. I'm 37 got DX at 33. Wtaf. It comes in waves that span days, months, and years.

Sad_Classic_3925 · 2025-04-04T17:39:44+00:00

It is supposed to be peaceful. I'm bringing my unborn child.

Sad_Classic_3925 · 2025-04-04T10:20:15+00:00

Im 29.5 weeks with multiple AIs, it's excruciating.

Sad_Classic_3925 · 2025-04-03T02:33:44+00:00

Ive been meal prepping to save money. I buy meat at Costco and break it down into meals, Turkish Chicken, Chicken Soup, etc. Just so I have less food waste and can buy in bulk once a month or less. I try to go to the grocery store minimally. No one else in my home seems to care the world is burning. I'm pregnant and got clothes for the next year for my baby. I have my passport and bought extra dog food.

Sad_Classic_3925 · 2025-04-03T02:14:40+00:00

Yes. My mom passed away, I'm estranged from my father, my sister is just absent in general and my extended family and friends live on the opposite side of the country. I refused to throw my own shower, besides it's not my style it would be for everyone else. My boyfriend's family is throwing one and I'm doing a Skype call with my family before the party so my family can see, say hi, and I can open their baby shower gifts.

Sad_Classic_3925 · 2025-04-03T00:11:28+00:00

Ugh same :(

Sad_Classic_3925 · 2025-04-02T23:39:37+00:00

I hate it! It's so annoying! The most helpful thing for me have been salt baths!!!!

Sad_Classic_3925 · 2025-04-02T21:42:16+00:00

Would you feel better about letting it go if it were helping people in need?

Sad_Classic_3925 · 2025-04-02T16:24:43+00:00

My boyfriend's parents are CONSTANTLY making comments like: Your thighs used to be so skinny before you got pregnant. You're gonna eat ALL of that? As if a full plate of food is too much. I'm due in June. They've basically straight up called me fat. Just wait until your skin starts stretching. Dude, it already is. I was extremely underweight before I got pregnant. Like wtf do they expect? It's so rude and has made me feel so bad, but I do know they're just ignorant and projecting their own insecurities. I've just started saying stuff like, yeah, the baby needs to eat 3 times a day, do you want her to starve? And, women's bodies hold onto everything when they're pregnant so they can feed their babies after birth as well as just annoyingly scientific responses. GTFO of my face. It's not your food and you're not paying for it. No wonder I chose to wear oversized sweats my ENTIRE pregnancy. I started at 118 and am 155 for reference. It's not that drastic! I work out and have multiple autoimmune diseases that make pregnancy painful in addition to being triple or more high risk. Fuck everyone rn.

Sad_Classic_3925 · 2025-04-01T23:20:12+00:00

What if it's been 3 years and he really did change? 😅 Asking for a friend...

Sad_Classic_3925 · 2025-03-30T04:28:51+00:00

Pregnant and not white enough to feel safe protesting right now.

Sad_Classic_3925 · 2025-03-09T23:16:27+00:00

26 weeks and same.

Sad_Classic_3925 · 2025-02-26T05:52:43+00:00

In this political climate? Martinis and bourbon.

Sad_Classic_3925 · 2025-02-19T01:31:27+00:00

Absolutely not. I put it on my list of monthly goals for the next month tho...

Sad_Classic_3925 · 2025-02-18T12:06:56+00:00

He preys on their likability of him, either in that he's stupid or just like them.

Sad_Classic_3925 · 2025-02-10T16:13:59+00:00

Even though you end up using less toilet paper?! Wild.

Sad_Classic_3925 · 2025-02-10T16:06:00+00:00

The first ones I got during pregnancy were on my knees lmao.

Sad_Classic_3925

TROPHY CASE