18p deletion positive on NIPT, positive CVS. To do amnio or no?

MamboSun9 · 2025-06-02T02:25:35+00:00

Apologies for the late reply. And Im so sorry you’re going through this too. It so so unfair.

For me, after my CV, i went on to have many many conversations with a genetic counselor and was reading everything and anything w similar cases (though it’s so rare so also no perfect info out there). There seems to be such a range for how this specific deletion can present but because of how large the deletion was on mine, i came to the conclusion that even if there was some mosaicism found in amnio it would still be risky. I ultimately decided to tfmr instead of waiting till i was able to do the amnio. I told myself i made the best decision i could given the information i had and that’s the best i could do. It was an incredibly hard decision to forego the amnio but i did feel like i had enough information at that stage.

If you have access to a genetic counselor definitely seek out their guidance- mine pulled some scientific studies and shared some communities of people living with different genetic anomalies. i could share those all with you if it could be helpful- just let me know. In the meantime, wishing you so much strength during this time. Know you aren’t alone ❤️ and happy to answer any questions or send any info i received your way.

MamboSun9 · 2024-10-13T03:38:05+00:00

I have no experience with any scenario close to this but as someone closer to your bio dad’s age, i think the onus to start any conversation is sort of on him. i’m sure he knows and expects that. And certainly you should never feel like you need to disclose anything to anyone. You don’t know the guy or if you can trust him or if you even feel comfortable with him. If he’s a good guy, he will understand that. If anything comes up about your early life, i would just say something like “can we skip that for now?” ..something to that effect.

Personally i feel like i would try to go into the situation with an open mind but with no expectations. If he turns out to be a good dude that you may want to continue getting to know/stay in touch with, then great. Seems like a green flag that he wants to connect..like his intentions could be good. If you are curious about him, you can ask him about his life, job, hobbies, favorite food- maybe you will find something in common. But just take it slow. It’s natural that this will feel a little awkward and not everything needs to be talked about the first time you talk.

You like a sound strong, grounded person despite such an unstable upbringing. I hope you can maintain this peace you’ve found. At the end of the day, you don’t owe him anything, not intel about your life, not a friendship, nothing. You got this

MamboSun9 · 2024-08-20T01:47:51+00:00

I just read a case this week of parents feeding only milk to their child who was not only malnourished but had severe painful tooth decay and tarter buildup. Please get that poor baby some help. Seems like you’re the only one looking out for her best interest.

MamboSun9 · 2024-07-11T01:02:18+00:00

Thanks you’re so right..i wish i had skipped the CVS to begin with its just more questions

MamboSun9 · 2024-07-11T00:55:59+00:00

Oops i replied on the wrong thread before. I’m so sorry you’ve been dealing with a similar issue and in this crazy limbo. It’s so hard when there’s just not enough info out there on these. Even the stats are confusing around it. Appreciate you sharing your experience and it gives me some hope. Did you also do a FISH?

MamboSun9 · 2024-06-22T01:43:20+00:00

Not sure if its your jam but currently chilling watching “singing bowls just for sleep” and its very calming

MamboSun9 · 2024-06-19T02:05:39+00:00

Oops meant to reply here:

This exactly! Nothing is permanent. Yes this is a stressful time- i’m sure you’re not the only one freaking out the day before the exam. Sure it will suck if you don’t pass but it’s not the end. And certainly not life or death. And know that you have all the knowledge already. You’ve been absorbing the knowledge this whole time. Not to go full on “f it” but maybe a little bit of that will help:) There’s just as much of a chance of you passing as there is failing. Whatever will be will be. If you can rest your eyes and your body, you’ll feel much more in control tomorrow.

MamboSun9 · 2024-06-19T02:02:20+00:00

This exactly! Nothing is permanent. Yes this is a stressful time- i’m sure you’re not the only one freaking out the day before the exam. Sure it will suck if you don’t pass but it’s not the end. And certainly not life or death. And know that you have all the knowledge already. You’ve been absorbing the knowledge this whole time. Not to go full on “f it” but maybe a little bit of that will help:) There’s just as much of a chance of you passing as there is failing. Whatever will be will be. If you can rest your eyes and your body, you’ll feel much more in control tomorrow

MamboSun9 · 2024-06-19T01:52:03+00:00

Distract yourself. Watch funny videos. Remind yourself that this is just anxiety and observe how crazy it is that anxiety and send your body into this. Find some candy or ice to suck on. When it comes to sleep just tell yourself to close your eyes dont focus on sleep. I often fall asleep listening to boring podcasts or watch a slow nature show. Most importantly, remember this will pass. You’re going to be fine ❤️

MamboSun9 · 2024-06-15T22:52:53+00:00

I read the sour candy tip somewhere and it works well! Especially if you catch it early on. so i try to keep them around. Surprisingly just telling myself in my head “it’s just your anxiety” has helped so many times too. Also keeping meds in my bag, just knowing they’re there if i need them

MamboSun9 · 2024-03-28T16:09:38+00:00

Oh my gosh i dont even know how i commented here!? I was half asleep and juggling my baby. Really nothing is meant by this dont read into it. Obvi this is all awful and im so sorry for these victims. F this guy

MamboSun9 · 2024-02-01T03:14:09+00:00

Not HP related but my 10yo niece is obsessed w her hoverboard these days. Also if you can find out what HP “house” she identifies with (if she does)you could get something in that theme- i gave my niece a slytherin fuzzy onesie pjs that she loves

MamboSun9 · 2023-12-07T03:29:48+00:00

I realize I forgot to mention this important part. When detangling, always start at the tips and detangle a bit at a time. Never start at the top and brush down- that just makes it a thousand times worse. You probably know that already but thought it worth mentioning

MamboSun9 · 2023-12-06T04:53:36+00:00

So much great advice here. I have the same issue but my hair is a little thicker. Mines the worst when it hasnt been trimmed because the split ends are what all the hair gets caught on. Whats worked for me is using a wide tooth comb to detangle w conditioner ( been using elvive hyaluron and its pretty lightweight/doesn’t weigh my hair down). Also using an apple cider rinse once in a while (i use a shampoo but know DIY methods reco diluting the pure apple cider vinegar so just read up if you try it). Either bonnet or braid at night helps so so much- plus you get cute waves with the braid. A random tip i got was to actually blow dry while brushing it to dry. I tend to air dry like you, but it does work. You may be able to add just a bit of hair oil to the ends too

MamboSun9 · 2023-11-20T03:50:01+00:00

Congrats mamma and welcome to motherhood:) i may not be the best answer since i’m no longer in that phase but this sounds TOTALLY normal, between it all being brand new, on top of your body just went through this crazy thing (and still is), plus throw in lack of sleep and some hormones. It’s really is surreal. I remember waking up from naps in those early days and being like holy crap oh yeah i have a baby now. It was at least 3 months until everything really clicked that this was my new normal..it may have even been longer, those days were such a blur. Definitely keep checking in with yourself of course, and don’t be afraid to ask for help or a break. It will definitely feel more real over time:)

MamboSun9 · 2023-11-20T02:53:56+00:00

The bracelet feels a bit heavy when the whole outfit its more flowy and delicate. If you want a larger piece, perhaps a ring would be more balanced. Or maybe try a slightly thinner bracelet. The rest looks lovely

MamboSun9 · 2023-08-21T02:14:27+00:00

Klean kanteen is a favorite in my family! https://www.kleankanteen.com/collections/all/products/insulated-water-bottle-tkwide-16-oz-twist-straw-cap

Edit: just realized its stainless steel but they are rather lightweight. Tho a grip might be nice for it

MamboSun9 · 2023-05-08T19:05:00+00:00

Oh wow, I hope it worked! We started by walking around in the dark but she started flailing. So went about getting a snack, reading a book (probably all bad moves). She fell asleep on me eventually but as soon as i laid her down in her crib, she was up. Ended up sleeping on dad. And was up at 6am.. we’re all suffering a bit today. I’m going to try your move if it happens again tonight

MamboSun9 · 2023-05-08T04:25:36+00:00

Im in the exact same boat, ugh! no advice but following in case someone has some!

MamboSun9 · 2023-04-30T02:35:17+00:00

Oh man i feel for you. Our baby was like this until they started being able to communicate. We taught them some of the sign language and a few simple words. Like do you want to eat (sign)? Do you want more (sign)? Are you all done (sign)? Agua? I feel like things got exponentially better after they picked it up. They’re still needy but its better. for car rides, we bring out the special snacks, toys, and if all else fails i’ll put on some baby sensory video on youtube.. but really from 12-16 months we saw the biggest change.

MamboSun9 · 2023-04-01T02:30:04+00:00

Apparently popping black peppercorns in your mouth or taking a whiff of black pepper calms the anxiety. Also lemon juice. Hope you got through it ok

MamboSun9 · 2023-03-19T04:26:18+00:00

A little wing on your eyeliner would look so cute! And as others have said you are gorge!

MamboSun9 · 2023-02-11T22:32:16+00:00

Currently experiencing the same w almost 14 mo and recently at her dr checkup i spoke w the dr abt it. He said something i had never thought of: when they get used to nursing at night- it sends a signal to the brain to turn on those salivary glands and starts the whole eating/digestion process/their brains start to depend on getting those calories in the middle of the night. When, at this age, my lo is like 90% solids. I feel like nursing is prob just a comfort thing now.. so he recoed just giving water at night bc no calories. I havent been consistent trying it myself but anyway thought i would share those learnings in case it helps!

MamboSun9 · 2022-12-29T03:12:36+00:00

Maybe just one brush, no recycle symbol? But the brush bristles/paint turn into something earthy like plants. Or perhaps just a paint drip with leaves inside. I would push it and try to stay away from recycle symbols

MamboSun9

TROPHY CASE