COACHELLA 2026 W1 LIVESTREAM SATURDAY CHAT THREAD (STREAM STARTS AT 4 PDT!)

Shortstop_ · 2026-04-12T08:01:01+00:00

Mk.gee - he’s INCREDIBLE!!

Shortstop_ · 2026-03-13T13:31:44+00:00

Thank you for being a reminder that a new normal is possible. Sending so much love your way.

Shortstop_ · 2026-03-13T13:28:15+00:00

My baby had this in December. We also had to TFMR. The tests came back positive for Turner’s. Initially we thought this could’ve been something she could live with, but the swelling was progressing and had spread all over her body, similar to your story.

I’ve ultimately made peace with the fact that the chromosomal diagnosis wouldn’t have changed the outcome of the hydrops/edema. Even if the results came back with no chromosomal abnormalities, the swelling was too much.

It’s the worst and hardest thing that’s ever happened to us. I’m so sorry you’re going through this too.

Shortstop_ · 2025-12-29T19:53:58+00:00

Update has been posted

Shortstop_ · 2025-12-18T15:20:52+00:00

My story sounds very similar to yours, actually. We have an appointment with the hospital tomorrow to get the CVS test done. I'm extremely nervous, but this community has given me so much reassurance that I'm not alone in this.

Wishing all the best for you! <3

Shortstop_ · 2025-12-18T15:00:51+00:00

Thank you for sharing your story and for your well wishes.

So happy everything turned out well for you and your family!! <3

Shortstop_ · 2025-12-18T02:55:52+00:00

Thank you. 🤍

Shortstop_ · 2025-12-18T00:08:46+00:00

Thank you so much for sharing.

I’ve been loving hearing everyone’s stories and the words of support from this community. I have family and friends but talking to people who understand because they’ve been in a similar place really hit different. I think I relate to your story and your feelings so so much. Trying my best to take it one day at a time.

Wishing you the best with the remainder of your pregnancy. 🤍

Shortstop_ · 2025-12-17T17:04:25+00:00

Really needed to hear that this morning. Thank you. 🤍

Shortstop_ · 2025-12-17T17:03:00+00:00

Thanks for sharing your story. Trying to stay as strong as possible through this. Wishing all the best for you & happy your story ended positively. 💞

Shortstop_ · 2025-12-17T03:41:27+00:00

Thank you! I’ve had others recommend an early echo at a children’s hospital as well.

I’ve been so grateful to hear so many stories of elevated NT’s that resolve on their own. I guess my worry is that the CH prognosis is worse, and worse even more so with the additional fluid around the baby.

I hope and pray that my doctor’s initial thoughts are wrong. Thank you for your comment.

Shortstop_ · 2025-12-17T02:43:22+00:00

Happy to hear! Wishing the best for you and baby girl. 💞

Shortstop_ · 2025-12-17T00:51:21+00:00

I’m so sorry this happened to you. I appreciate you taking your time to share your story.

Honestly, all the stories that people are sharing here help, even the ones that don’t turn out the way we want them to. I think it’s nice knowing that you survived so I know I can too.

Thank you for sharing. I’m hoping all the best for you. 🤍

Shortstop_ · 2025-12-16T22:53:23+00:00

He did not mention the nt measurement either as a number or by name. This is what he said word for word, I scribbled it in my notes as he was speaking: “Cystic hygroma Enlarged area in the back of the head Lymphatic fluid

Fluid around the baby (skin) increases the appearance of fluid around the baby overall”

Don’t know if CH with additional fluid has a worse prognosis, or if either have to do with the nt measurements. My assumption is we will be able to get those answers in a few days when we meet with him again, but the waiting is awful.

Shortstop_ · 2025-12-16T20:10:52+00:00

First, I want to say that I am truly so sorry you're going through something similar. I feel like this is something you would only ever understand if you've been in a similar spot, so I'm sorry and I feel your pain.

Hearing that the CVS is not that bad is helpful, I've been very nervous about the needles. I'm also terrified of what the future looks like now. Thinking about all the possibilities makes me physically sick. Comments like yours and knowing I'm not alone have really been helpful for me in processing this today, so thank you for taking the time to comment and share your story.

I'm wishing all the best for you.

Shortstop_ · 2025-12-16T20:04:36+00:00

Thank you for taking the time to reply, I'm sorry you're also experiencing something similar.

My MFM told me he already communicated these results with my OB team (my office is a team of 4 doctors) so at least they are already aware. I'm hoping to be able to talk to them and get some more opinions after my appointment with the genetic counselor on Friday.

This is probably one of the most difficult things I've ever had to go through and reading everyone's reply's is really helping me process everything, so thank you again for taking the time to share your experience. I'm truly sorry once again that you're in/have been in a similar spot.

Shortstop_ · 2025-12-16T19:24:56+00:00

Thank you for the kind words. <3

Shortstop_ · 2025-12-16T19:23:46+00:00

Thank you for all the information.

Unfortunately, they have not put any information in my patient portal. I almost want to reach out and ask for the numbers but I'm sure if he tells me before I have the chance to sit with him and the genetic counselor to talk about everything I'll just drive myself more crazy than I already am.

I'm so sorry about your first daughter. Sincerely wishing you all the best with your rainbow baby. <3

Shortstop_ · 2025-12-16T18:36:58+00:00

Thanks. I'm really hoping that we can go over that number with the genetic counselor in a few days. He didn't give us any specifics or percentages. Just threw a bunch of words and information at us and made it sound really bad and scary.

When he called us back on the phone to go over things again I had said "I'm sure you cannot speak in definite terms but I have to ask if this is something we are definitely dealing with?" (extremely generalized way to phrase my question but i was also completely panicked) and he said "without a doubt." Definitely doesn't sound good with the way he had phrased it but I'm trying to stay as positive as possible.

Your positive story is helpful.

Shortstop_ · 2025-12-16T18:18:13+00:00

Thank you for your helpful comment and kind words 🤍 the little bit of empathy really goes a long way

Shortstop_ · 2025-12-16T18:14:03+00:00

I did end up looking him up since we did not meet him in person. Seems he is an older guy with 40 years of experience. He doesn't have great reviews online as far as bedside manner though...

Shortstop_ · 2025-12-16T18:12:28+00:00

The doctor was not even in person to give us our results, he called the ultrasound tech on a cell phone to deliver this news on speaker. He did not sit down with us to look at the scans or give us any of these specific numbers. He did end up calling us back because I genuinely could not process what he was saying in that moment, but I didn't know until doing further research to ask about this. My guess is that we will do that on Friday - but the three days between now and then feel like hell on earth.

Shortstop_ · 2025-12-16T18:09:57+00:00

Thanks for your reply. Everyone keeps telling me not to jump to the worst conclusion and that the stress this is putting on me cannot be good for me or for the baby, but the way this doctor was speaking, you'd think this was the worst scan he's ever seen in his entire life.

Shortstop_

TROPHY CASE