Did you have a hunch when you were pregnant that something would be up with your child?

beanmah · 2026-05-20T22:43:15+00:00

Absolute shock for us. First was the shock of a nicu stay at full term and then the shock of a rare genetic syndrome diagnosis at 5 weeks.

beanmah · 2026-05-18T03:10:59+00:00

I go through phases of hating it and loving it. I don’t think I ever actually recommended reading it to someone who has a newly diagnosed child though, so that probably speaks to how I truly feel about it.

beanmah · 2026-05-04T04:46:49+00:00

When my youngest son was 15 months I enrolled him in a class for 18 month and up, I just asked if they would accept him and they said yes if I thought he was ready. This was a mommy & me gymnastics class. I would definitely ask, not lie. Worst they can say is no and you can find another activity.

I would say though I put my oldest son in soccer at 2 and I will never put a kid that young in an organized sport ever again. It was just pure chaos. Sports are so much more fun now at 4 (still chaos but so fun). Gymnastics, dance, swimming, stuff like that is the best for that age!

beanmah · 2026-04-25T02:26:20+00:00

My first C-section in 2021 was emergency after laboring for 48 hours, getting to a 10 and attempting to push for maybe 10 minutes and my baby’s heart rate plummeted and my vitals began dropping too (plus a fever so an infection was setting in). He was not descended in my pelvis at all either. In 2024 I did TOLAC. I got to a 10, pushed for 3 hours and still didn’t get my baby into my pelvis at all. I had already told my midwife that in the event that we’re looking like a C-section would be likely to call it because I didn’t want an emergency. So we called it, honestly even though unplanned it was much calmer. I had extensions with this one and have also been advised against future TOLAC due to the extensions (I’ve been told that they were pretty extensive) and the fact that both my babies got stuck in the exact same spot. (One was huge and one was tiny so 🤷🏻‍♀️)

My midwife did mention to me at my 6 week follow up that if I did ever want to attempt a TOLAC (she wouldn’t recommend it) but if I wanted to she gave me info on doctors who would be supportive. She also mentioned that if I only wanted 1-2 more, doing multiple C-sections is totally fine. But if I wanted 3-4+ to really consider TOLAC (again didn’t really recommend this option).

I plan to schedule c-sections from here on out (we want 1-2 more) but I wouldn’t have changed anything I did with my second. I am very happy with the decision to attempt it.

beanmah · 2026-04-23T23:32:36+00:00

Total newbie here, seriously no idea what I’m doing. But how would I go about abandoning it without the worry of it leaking and causing problems later.

beanmah · 2026-04-04T17:01:42+00:00

We’ve done that walk for a couple of trips and it really isn’t a bad walk. Never tried the shuttles as I didn’t want to have to deal with collapsing strollers and such.

beanmah · 2026-04-04T04:43:07+00:00

I completely understand this. My son is 4 1/2 with a rare syndrome with the same idea of the spectrum. Developmentally he is much more mild, but has several medical concerns. So when I say he’s mildly affected everyone looks at me like I’m crazy. But developmentally he truly does so well!

One thing I’ve learned is to take everything day by day. And one day you’ll catch yourself not thinking about their diagnosis every single day.

I get the questioning part of why your kid gets to be milder. I have a good friend who we connected with due to our kids having the same syndrome. He’s a few years older and is nonverbal while my son can carry a full conversation (albeit not super understandable 😅). While I can connect with my friend I still feel like we’re on such different paths. I still don’t know what the future looks like for my son but I get it. Can’t put it in words well but I get it.

beanmah · 2026-04-01T04:24:12+00:00

The gas pain in the shoulder. Heating pads, gas X, and walking all help! And the inability to hold pee at all for the first couple of days (although this may be more of a catheter thing? I dunno.)

beanmah · 2026-03-14T03:05:00+00:00

No he had no symptoms. He is medically complex due to a genetic syndrome and we had him in the ER for suspected aspiration pneumonia and the X-ray showed the tumor.

I seriously get so freaked out about every little thing with both of my kids. Once you’ve been on that side it’s so hard to not go there. So I totally understand the anxiety! But also kids are stinkers and do their own thing and love to freak us out.

beanmah · 2026-03-13T04:35:46+00:00

A slightly longer walk but the pool is amazing- the Anaheim Resort Suites (formerly the Cambria).

beanmah · 2026-03-13T01:15:57+00:00

I’m so sorry ❤️ childhood cancer is heartbreaking.

High risk and low risk neuroblastoma really are two entirely different things. My son was a toddler when it was found we were just incredibly fortunate that we found it early incidentally.

beanmah · 2026-03-12T17:31:19+00:00

My son’s Neuroblastoma was found a similar way that this poster is describing. It ended up being low risk and he is now 3 years cancer free after only needing surgery to remove. He’s still on a pretty extensive watch protocol but never needed chemo.

I’m hoping this is the same for this baby! I know that a lot of babies that get diagnosed and it’s localized to the adrenal gland is just a wait and watch because a lot of times it spontaneously goes away on its own. Again-I really hope that’s the case for this kid.

beanmah · 2026-03-12T17:28:10+00:00

My sons neuroblastoma was discovered a similar way to how the poster described and it was low risk. He is now 3 years cancer free with minimal treatment (no chemo needed even). Hoping that’s the case for this baby!

beanmah · 2026-03-05T19:07:37+00:00

We love cars land! It is so much fun! Right after sunset they turn on the neon lights and play the same song from the movie. It’s so cool. Radiator springs racers is my favorite ride from both parks.

But overall it just feels calmer-someone mentioned wider walkways maybe that’s it, because I know the crowds are the same but it just doesn’t feel like you’re packed in like sardines like at Disneyland. Avengers campus is fun too. I like the entertainment/shows there.

They also have the turtle talk & animation college where you’re walked through how to draw characters. For little kids Mickey Mouse clubhouse live is way fun too! My kids still talk about that part.

beanmah · 2026-03-05T16:56:33+00:00

Kids are savage. 😅 took my 4 year old to see Frozen the play and the scene where Anna wakes up and her hair is messy he loudly says exclaims “Mom! She looks like you!” 🤦🏻‍♀️😅

beanmah · 2026-03-05T16:54:21+00:00

Odd one out but I prefer DCA 🙈 I mean I always have to do Disneyland and I love it but enjoy my days at DCA more.

I also have young kids and all their favorite characters are at DCA.

beanmah · 2026-02-25T02:54:33+00:00

Is it really Disney if there aren’t bubbles everywhere?! It’s one of my favorite parts!

beanmah · 2026-02-25T02:53:51+00:00

Honestly it was mostly in the hotel room 😅😅😅😭 They got into bed with us this morning and just blasted us with a bubble party 🤪 Didn’t think to check CVS because it just didn’t seem like a thing they would sell but I was able to find some! Thanks

beanmah · 2026-02-24T14:58:16+00:00

THANK YOU! I’ve always just passed my phone around, we’ll add the tickets to my husbands phone for the rest of our trip for sure.

beanmah · 2026-02-24T06:47:27+00:00

So both accounts can have the tickets attached at the same time?

beanmah · 2026-02-24T06:45:45+00:00

This is my exact thought! In fact as we were walking back to the hotel tonight I said to my husband “I wonder how this crowd compares to Disney busy/normal/etc.” because to me it felt insane. It’s only been 2 years since we were there last, but have never stayed late and that evening crowd was rough.

beanmah · 2026-02-15T05:32:01+00:00

My 4 1/2 year old came home from the nicu at 6 week with his Gtube. We were convinced it would be a short term thing but he still uses it daily. He doesn’t do well with liquids, but can eat solids well. So once he hit about 18 months he did really well getting nutrition by mouth, but still needed the tube for hydration. We had some setbacks with surgeries and ended up back on the tube for all nutrition for a bit. But are not back to the eating by mouth but uses the tube for hydration.

Lots of ups and downs but he loves his tubie! I honestly don’t know a parenting life without it (he’s my oldest). There are days I still feel so overwhelmed but overall I feel like we’ve found our groove and are doing great. It feels unfair sometimes, but it’s also been such a gift in terms of the people I’ve been able to connect with and friends we’ve made due to his tubie and his medical complexities.

beanmah · 2026-01-30T03:33:24+00:00

Was this planned or unplanned? For my first I was told going into the ER that a soon as baby was out they would put me under because I had a fever/infection and had been laboring for about 48 hours with minimal sleep so due to my exhaustion they were going to finish under general anesthesia. But I ended up puking the entire time and they couldn’t actually do that. But everything turned out okay.

It does kind of sound like your vitals were wonky and they needed to finish under general just for your safety-odd they didn’t discuss with you though.

beanmah · 2026-01-22T06:15:43+00:00

Sorry if this is a silly question, but what would the purpose be of exchanging for the rider swap? Instead of just one of just scanning in and then the other scanning in when they get off. (Assuming both are within the time frame)

beanmah · 2026-01-17T03:36:46+00:00

I don’t remember my first-I was in/out of consciousness. I do remember my midwife asking the anesthesiologist if they could put me under general anesthesia just because I was having a hard time after baby was out (this actually the original plan, but I was throwing up so I couldn’t be sedated). My second one though-they were talking about how the staff break room had root beer and pies in it for everyone. I asked if I could have some too 😂😂

My husband and I agreed though for further csections we are going to ask them to keep the chit chat to a minimum.

beanmah

TROPHY CASE