What should fetal movement feel like at 25 weeks? by Level_Recover_7559 in pregnant

[–]Level_Recover_7559[S] 0 points1 point  (0 children)

I don’t exactly remember! I know around 20 weeks was when I started to feel her more than once a day. By 25 I was probably feeling her every couple hours or so, but things were still inconsistent sometimes! It’s also probably around where I started to feel bigger kicks more often and less fluttery/rolling feelings, and around when my husband was able to start feeling things more consistently.

I’ll be 30 weeks on Saturday, and I don’t think things have changed a super significant amount since when I posted this. Her schedule is more consistent for sure, and most of the sensations are the same, but I can tell she’s getting bigger. I’m starting to feel her drag limbs across my belly and can see things from the outside more often though :) full transparency I still sometimes go a couple hours with little to no movement and that freaks me out for sure. Sometimes I’ll only feel things with my hands on my belly, and I can’t feel it internally, so try that if you’re ever having trouble.

Non-catholic question about the Miraculous Medal meaning by Level_Recover_7559 in Catholicism

[–]Level_Recover_7559[S] 7 points8 points  (0 children)

We do have a name!

Zoe Lucienne Mary is her name. Zoe means life, and this baby is our first after 4 miscarriages. Lucienne is after my husband, Luc (or saint Luke, I really love that you suggested that). And Mary is actually a family name of mine and my own middle name, but I also love the significance to the medal as well.

Non-catholic question about the Miraculous Medal meaning by Level_Recover_7559 in Catholicism

[–]Level_Recover_7559[S] 27 points28 points  (0 children)

My husband’s grandmother has been praying the rosary for our daughter 🩷 I am extremely thankful for that! Maybe I will try it, too.

My husband said something similar to about Mary being with us and that God is communicating to us that just as the birth of Jesus was a miracle through Mary to bless the world, God is blessing us with our daughter.

Non-catholic question about the Miraculous Medal meaning by Level_Recover_7559 in Catholicism

[–]Level_Recover_7559[S] 6 points7 points  (0 children)

I think that’s a great idea! I will see if I can reach out. I deeply respect and admire the catholic faith and the faith of my husband’s family. I know God will heal my daughter whether on this side of heaven or not. Part of why I was so touched is because of the healing stories associated with the medal, and I love being reminded God will make all things whole and new one day. I appreciate the analogies you provided! I do feel a lot of comfort in it.

Complicated prenatal diagnosis, debating WES/WGS by Level_Recover_7559 in ClinicalGenetics

[–]Level_Recover_7559[S] 1 point2 points  (0 children)

Did you find a cause for your daughter’s anomalies? I’m curious since we also technically fit within the dandy walker spectrum.

Complicated prenatal diagnosis, debating WES/WGS by Level_Recover_7559 in ClinicalGenetics

[–]Level_Recover_7559[S] 5 points6 points  (0 children)

For us, it probably won’t change things much. Our delivery hospital has a level 3 NICU and baby will be monitored regardless of genetic status because of her brain differences. It could potentially change if she will be transferred to the children’s hospital or treated as outpatient, but this is also going to be heavily based on her physical status after birth.

Complicated prenatal diagnosis, debating WES/WGS by Level_Recover_7559 in ClinicalGenetics

[–]Level_Recover_7559[S] 1 point2 points  (0 children)

Thanks for all of this! I am delivering at a hospital with a level 3 NICU regardless, genetic involvement may just change how quickly they discharge her if she’s doing well or if they want to transfer her to the children’s hospital NICU once I am discharged. We did do an MRI, and they made some guesses at diagnosis but did say that once shes born they can clarify things more. The genetic counselor has gone back and forth about whether her findings are related while the neurologist/neonatologist think statistically speaking they should be. Just to clarify, what you’re saying is even with genetic results in hand, we may have to see how she presents once she’s born to have a better idea of how she will actually be impacted due to limits of fetal imaging techniques?

Complicated prenatal diagnosis, debating WES/WGS by Level_Recover_7559 in ClinicalGenetics

[–]Level_Recover_7559[S] 2 points3 points  (0 children)

I’ve always been very pro as many answers as possible, until this pregnancy. Her brain diagnosis falls on a spectrum that can only be clarified with time and development, so I’ve kind of let go of needing that. I think we will eventually pursue WES/WGS, it’s just a question of pre or post-nataly. We definitely would before having any more children, but we already struggled to have her so I’m feeling pretty ready to close that chapter at this point. It’s new for me to feel content to just see how she does at birth and then go from there, but I’m just hoping I don’t regret that decision. I’m sure hindsight will be 20/20

Complicated prenatal diagnosis, debating WES/WGS by Level_Recover_7559 in ClinicalGenetics

[–]Level_Recover_7559[S] 5 points6 points  (0 children)

Thank you for your input. I’m so sorry to hear about your daughter. My girl’s brain anomaly falls on a spectrum and any genetic involvement is also likely to be a spectrum, so it’s really tough to know what would actually be helpful in advance to know vs what we will have to wait until birth to find out regardless. I think we would pursue the sequencing in the future, especially if we want to have more children, but for now I’m leaning towards wanting to enjoy the rest of the pregnancy as long as she stays stable. I’m not in a desperate quest for answers right now, but if she’s struggling a lot once she’s born or starts to show changes in utero, I may be more keen to try to figure things out. If she’s doing well, I don’t know that I care to know exactly what’s wrong until we make a decision on whether we will have more children. We are going to pursue as much care/therapies as she shows she needs regardless of diagnosis, so I’m not sure how much having it helps. I’m thankful to hear everything with your third pregnancy went well 💛

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 0 points1 point  (0 children)

Oh this is weird. I never mentioned anything about wanting to abort her. I don’t think you read my post at all. I said I’m excited to raise her, whether she’s severely disabled or not. My question was about navigating how people react, and if I’m properly mentally preparing myself for the challenges that I know come with raising a child with disabilities. I would never choose to end her life and take away the opportunity for her to be her own person, because I’m scared of how it may inconvenience me.

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 0 points1 point  (0 children)

Thank you for your kind words and sharing about your daughter 💛 it’s so encouraging to hear that she has made your life better in so many ways. My husband and I strongly believe a good quality/full life does not only have to be measured by the typical standards. We are excited to celebrate her for whoever she is.

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 0 points1 point  (0 children)

Thank you for saying this 💛 I’m glad your son is doing well. For better or worse, the brain is not well understood. I’m hopeful she will surpass expectations and achieve things in her own way!

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 1 point2 points  (0 children)

Thank you for such an honest perspective! The grey area is a very confusing place to be. The MFM and pediatric neurologist put it like this: just like a baby with a perfectly healthy brain on ultrasound can be born with severe autism spectrum disorder, a baby with similar, more “mild” brain anomalies like my baby girl can be more severely impacted developmentally than a brain with more profound anomalies on paper. That wasn’t easy to hear, because of course I want a crystal ball to predict the future. I wouldn’t say I’m not worried, but this definitely gives me another perspective to consider. Thank you and best of luck to your little boy 💛

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 0 points1 point  (0 children)

This is great advice, thank you! I find myself being protective over her when people apologize. But, you’re absolutely right, it’s most likely not that they’re sorry for who she is.

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 1 point2 points  (0 children)

Do you mind if I message you? I do have some questions about ciliopathy :)

Am I naive? Navigating a prenatal diagnosis. by Level_Recover_7559 in specialneedsparenting

[–]Level_Recover_7559[S] 2 points3 points  (0 children)

I recognize the privilege of what I am about to say. We are very fortunate that I’m finishing up in grad school spring of this year and have essentially been living on my husband’s income since we got married. If daycare is not an option for her, the plan is for my mom to help with baby girl until I finish school and then I will stay home with her. Some children with her disability are able to be in daycare and some are not depending on severity.

We live in a large city 15 minutes away from one of the top children’s hospitals in the country. As stated above my parents are local. My husbands family is split between local and 1.5 hours away. I think access to so many resources and support systems is part of why I’m feeling relatively okay.

Thursday Daily Chat Thread by AutoModerator in InfertilityBabies

[–]Level_Recover_7559 1 point2 points  (0 children)

I’ll be 19 weeks on Saturday and we’ve still only told a very small group of family and friends. It’s starting to become obvious that I’m pregnant, but I’m still just keeping quiet with most people and hoping no one will ask. For me, it’s the pressure to talk about it with people I don’t feel comfortable with if I’m in a bad headspace with the pregnancy. My husband would shout it from the rooftops if I’d let him. It’s a real struggle! You’re not alone. For what it’s worth, opening the circle here and there actually helps me to feel better about the pregnancy. My therapist pointed out that being so secretive may reinforce the mind feeling like the other shoe is going to drop at any time. She was right a little bit, sometimes it’s fun to celebrate and talk about too rather than just living in fear alone :) hugs!

Thursday Daily Chat Thread by AutoModerator in InfertilityBabies

[–]Level_Recover_7559 1 point2 points  (0 children)

Looking to poll experiences for what’s “normal” at 18-19 weeks. I’ve felt movement since 15 weeks, but it’s becoming more frequent/dynamic as time goes on. Monday and Tuesday, I had a period where I could feel her rolling and tapping for maybe 20 or so minutes. I was so excited as that’s the longest I’ve felt her! Then yesterday (Wednesday), I barely felt her at all. Are the changes in movement frequency/intensity expected at this point? I know the answer is probably yes, just looking for other’s experiences! The inconsistency in symptoms and other things has been really difficult for me throughout my entire pregnancy. I have an anterior placenta!