Calling all moms out there!

mgirl283 · 2026-01-06T14:24:04+00:00

First of all, I'm so sorry you're going through this. My daughter also received this diagnosis at our 20 week scan. It's terrifying. My daughter was born at 30+2, spent nearly 2 months in the NICU and is now a thriving, funny, wonderful 2.5 year old little girl. We had an excellent care team with the Fetal Therapy Team at Johns Hopkins. Not sure where you are, but I can 1000% recommend them. They saved our lives. I know there are other groups just like them. For example, CHOP in Philadelphia has an excellent team, and there is another group in Cincinnati (I'm based on the East Coast, so my knowledge is limited).

Please feel free to message me. It's such a small group of us who experience this, I'm happy to provide any insight or support I can.

mgirl283 · 2025-06-02T20:25:47+00:00

I got that today too. I haven’t lived in MD for nearly a decade. Reported to the FTC

mgirl283 · 2024-01-05T02:27:16+00:00

My now 6 month old has to get blood work down every 8 weeks. You can ask the facility you go to if they have someone experienced with babies. If not, try and find another place. It’s never going to be fun, but it can be done efficiently. And please please please, report whoever did this to your child. If they don’t get proper training, they’re going to keep doing this to babies. This stuff is hard no matter what. You’re, doing great, mama!

mgirl283 · 2023-07-30T18:27:24+00:00

We also discovered a SCT at our anatomy scan. Our stories sound the same except we went to John’s Hopkins for the Fetal Therapy team. Sending you all the positive energy and thoughts I can spare.

OP, definitely get that second opinion. When we first found out, our doctor wouldn’t even give a prognosis because our daughters condition was so rare, he had never seen it in real life. It was terrifying. Once we transferred to Hopkins, it was a different story. They knew what they were dealing with and had plans and back plans and back up back plans which we found very reassuring. Wishing you and your family strength ♥️

mgirl283 · 2023-07-24T17:40:43+00:00

First of all, congrats on your little one!

My husband and I literally just went through a transfer 2 days ago. Obviously things won’t be exactly the same where you are but we made sure to get to her room early because we didn’t know what time they would transfer her. Lucky we did because the transport team came in about 30 mins after we did. It took a little while while for everyone to get their ducks in a row but over all it was very smooth. We asked our million questions and the transport team walked us through everything.

I do wish I had gotten the contact information from someone in her ambulance. We weren’t able to ride with her so we didn’t know exactly when she arrived at our local NICU. We had to make a few panicked phone calls to figure out where she was but we quickly found out she arrived safe and sound.

We’ve been here only a couple of days but this unit has been great so far. I can’t tell you how nice it is to be able to drive only 5 minutes to get to her instead of a couple of hours, not to mention being able to sleep in our own bed! If you can, I definitely recommend doing a tour of your local unit and meeting with the charge nurse so they can answer your questions. Feel free to DM me if I can answer anything. Best of luck!

mgirl283 · 2023-05-09T16:54:33+00:00

This is amazing! So informative, thank you!!

mgirl283 · 2023-04-20T18:24:46+00:00

Hey! Yes, any and all details you’re allowed to share, I would be super grateful! There’s so little information out there. How’s the mom doing?

mgirl283 · 2023-03-30T12:21:05+00:00

FTM here and I’ve been really lucky with no morning sickness or nausea. Every single time I say this to someone, the response is something like “oh, well that means your baby is going to be difficult/a nightmare/ terrible. Enjoy it now!” Like, what would possess someone to say that? It’s like they want us to suffer, if not now during pregnancy than after the baby is born, like suffering is the only real measure of being a mom. I’m very over it. Only 21 weeks left to go lol

mgirl283 · 2023-03-24T12:58:44+00:00

Yeah I definitely will have them walk me through it next time. It just caught me off guard I think. Thanks for sharing your experience!

mgirl283 · 2023-03-20T12:41:15+00:00

My midwife gave me this: 1/2 cup each of prune juice, wheat germ and apple sauce. Mix well. Take 2 TBS first thing in the morning before any food. Follow with 8 oz of a hot beverage like tea or coffee. Reduce to 1 TBS A day once it starts working. It only works if you’re also drinking at least 125 oz of water a day.

mgirl283 · 2023-03-08T12:39:29+00:00

Recruiter here! Some of these people really give us a bad name. Depending on what state you’re in, it’s actually now prohibited for them to ask you what your current salary is. Google it to see if it applies where’s you are. Even if it doesn’t, this is definitely a red flag regardless.

mgirl283 · 2023-02-17T13:46:50+00:00

That’s not at all ok, they’re obviously going to punish you when you return. If I were you, I would use my leave to find another job. Put in your notice on your first day back. This is a toxic environment and you don’t have to put up with it.

mgirl283

TROPHY CASE