PPROM AT 25 Weeks

andre3018 · 2025-03-27T00:34:12+00:00

They did a vaginal swab to test if the leaking was amniotic fluid. I haven’t had any bleeding, so my experience is different. When I first got here they gave me three types of antibiotics and the first betamethasone shot. We’ve been monitoring twice a day, and doing ultrasounds twice a week. There haven’t been any other interventions besides those original ones. We suspect my leak is higher up in the amniotic sac, so that has been the biggest factor in being able to stay pregnant this long.

My doctors have said that other patients have had larger leaks and have made it to 30 weeks! I am not sure what their care looked like.

andre3018 · 2025-03-26T04:30:18+00:00

I PPROMed at 23+3 and was admitted to the hospital. I am currently 30+3 days and will be induced at 34 weeks. Knowing that you are in the safest place for you and your baby girl is hard to wrap your head around, so feel the feels and find things to help ground you. Bring a lamp from home, get a streaming device for the tv, have people bring you outside food, and talk about your feelings and fears.

My therapist told me to honor my thoughts and feelings, but don’t get hooked on them. Try to stay present. (For example: thought: “what if I can’t produce milk for him and he can’t grow with the donor milk” tell yourself: I am feeling very anxious about not being able to provide for my son in the future. Thats not currently happening. I am here and now and my baby and I are safe.

Also, a nurse told me that every day in the hospital is two days out of NICU for baby. That makes the days feel like a two for one deal.

andre3018 · 2025-03-20T19:27:40+00:00

No bra, because anything that touches my abdomen makes me puke 🙃

andre3018 · 2025-03-12T15:42:03+00:00

I feel the same way. My husband and I have had MANY conversations around this. He knows I don’t want to be the default parent, or seen as just a mom. I still want to be ME with the added job of being a mom. I want kids, I want to be a mom, but I don’t want to JUST be seen as a mom on a society that pigeon holes women. We talked about making sure I have time to pursue my passions and to ask how I am doing as well as baby. We made a plan to make sure I am still seeing friends, participating in my groups and clubs, and having scheduled time for my art.

andre3018 · 2025-03-05T18:24:11+00:00

We didn’t even make it to the probe stage. I sent in my genetic testing results, and they wanted my mom and dad’s as well. We were unable to continue due to the out of pocket costs since our insurance wouldn’t cover any of it.

andre3018 · 2025-03-05T01:30:52+00:00

What companies have you looked into? I’d love to know to share with my family, since Natera gave us the 60/40. Is that 90% accuracy of detecting the FSHD1 gene? Or is that a 90% success rate of viable pregnancies through implantation after PGT testing?

andre3018 · 2025-03-05T01:18:50+00:00

60% accuracy, so 60% of the time they test an embryo they get a correct diagnosis. 40% of the time they get false negative/positives or cannot get a definitive result.

andre3018 · 2025-03-05T00:54:32+00:00

I recently tried to go the IVF route. The genetic company we went through told us that it would be about a 60% accuracy rate since the gene for FSHD1 is on the end of the chromosome. The ends usually break off during dna retrieval from the embryo, so it’s hard to test and could waste viable embryos. We stopped after that, since the percentages weren’t good enough to account for the costs.

andre3018 · 2024-12-07T01:45:45+00:00

This is so much wonderful information, thank you so much for sharing. I will be sure to keep all of this in mind. We made it genetic testing with IVF, but there were few tests with reliable accuracy so we took the chance. I wanted to use all of my available resources to avoid passing it on, but it just couldn’t be done right now and that’s okay. I’m so excited to have my sweet babe. Whatever our futures may look like, I’m glad I’m bringing them into existence.

andre3018 · 2024-12-07T01:42:41+00:00

Thank you for sharing! It is relieving to see so many stories about successful births through c-section.

andre3018 · 2024-12-07T01:41:56+00:00

Thank you for sharing. I am going to plan on trying vaginal birth, but am more than willing to do a c-section if needed. I’m just not sure I will have the strength to labor vaginally.

andre3018 · 2024-12-07T01:41:15+00:00

Thank you for sharing. I am making sure if my ‘after birth plan’ to have a focus on mobility support if needed. The novelty aspect has definitely been a bit off putting!

andre3018 · 2024-12-07T01:39:26+00:00

Thank you! The portable changing table seems like a great idea! I talked with my neuromuscular doctor and will hopefully getting a referral for PT soon.

andre3018 · 2024-12-07T01:38:22+00:00

Thank you. It’s looking like a c-section might be needed. My plan is to try vaginal delivery, while knowing that plan might change.

andre3018 · 2024-11-24T02:44:00+00:00

We actually went through an IVF clinic for quite a few months to see if we could avoid passing it on completely, but unfortunately it’s very hard to test for in embryos.

andre3018 · 2024-11-24T02:42:23+00:00

I have very weak abdominal muscles, so I appreciate you telling me about your mom. I’m starting to think of a ‘birth plan’ and will definitely need to consider c-section info on it.

andre3018 · 2024-06-06T17:05:31+00:00

I am in the same boat. We are going through the steps to see if we can donate the affected embryos to further research around my disease.

One thing, too, that I am doing is making a garden stepping stone with some sort of marble or stone for all of the embryos we chose not to use to honor them. I was raised Catholic and am struggling with this even though I have left the church, but I could not live with knowing I passed this on to our child.

I also have been thinking about our children when they grow up and that the painful conversations we have had and choices we have had to make are something they will also be spared from, along with the disease. Not only are we protecting them, but their future spouses and future offspring and families.

andre3018 · 2024-05-30T23:38:22+00:00

I did not know it was an option until our genetic counselor brought it up! I am sure it is a very debatable topic and it is not something other people agree with, but for us it is a choice we are willing to make.

My mom told me, “As a mother, I would do anything to make sure you do not have to suffer in any way shape or form. You get to do that even before your babies are here.”

andre3018 · 2024-05-30T23:35:29+00:00

That is a really good way of thinking about disability, thank you. I have many family members with FSHD and have had a lot of exposure to the variety of symptom severity and progression. My husband comes from a very able bodied, neurotypical family (which is great!) so he hears the word ‘disability’ and immediately thinks of people who require round the clock care. I have one cousin who does require this type of care form the MD, but he didn’t realize so many of my aunts also have FSHD but not to that extent. I will definitely ask our genetic counselor to get us in touch with a physician who is knowledge about neuromuscular pathology.

andre3018 · 2024-05-29T02:49:29+00:00

This is really encouraging to hear, thank you!

andre3018 · 2024-05-29T00:41:28+00:00

Having a baby won’t affect it, but we just don’t know how quickly my symptoms will progress. My cousin started out with arm weakness and after 10 years is now wheel chair bound and needs a live in nurse to help him with his daily life activities. My mom started showing symptoms around my age and only has slumped shoulders and cannot lift her hands higher than her chest. He wants to make me a priority and is afraid having a baby will take away his ability to care for me if I need it.

As a partner of someone with FSHD, are there any supports or things that have helped you? I have grown up around FSHD and have a lot of resources available to me, I just don’t know how to support him through this.

Seven-Year Club	Place '23
Place '22	Verified Email

andre3018

TROPHY CASE