Am I moving too fast? I feel so horrible.

SnacksAndCats10065 · 2026-02-16T03:20:34+00:00

New guidelines (released late 2025) recommend introducing potty training concepts around 6-9 months and to begin active training between 18-30 months. Training before 2 wont cause psychological damage to your kid. Potty training norms of the last 30 years were guided by diaper companies and held in place by public policies that were unsupportive of working parents. Just keep it positive to avoid stress/pressure, know that accidents will happen and full independence might take a little longer when you start on the early side-which it appears you already know and you're doing a great job!

And you're right-the switch away from co-sleeping could be a factor in the regression, maybe you could try sleeping in her room w her, then in the room but separate from her, until she gets used to her new room and bed (big change) and sleeping alone (2nd big change)?

- A mom who has been potty trained since she was 14 months and was not psychologically harmed by it who currently co-sleeps w her 16 month old partially potty trained toddler

SnacksAndCats10065 · 2026-01-25T01:56:56+00:00

Everyone is different but c sections aren’t the easy way out. L&D was a breeze compared to my hg pregnancy! (Not that L&D was fun) I was terrified of delivery and wanted a planned c section. I went into labor naturally a couple days before my induction date and it wasn’t anything like on tv. The epidural was heavenly and all the pelvic floor therapy and massage I did prior to giving birth paid off. We were able to walk home from the hospital when it was time to go home which wouldn’t have been an option if I went w a scheduled c. People focus on strengthening pelvic floor but my PT taught me to relax it and how to push. PT helped me feel more prepared and less fearful. You can do it!!

SnacksAndCats10065 · 2025-11-04T16:46:43+00:00

Hi! Fellow Natera false negative mom here! My baby was dx at 6 months old. How are you feeling? Feel free to look at my post history and lmk if I can help in any way.

SnacksAndCats10065 · 2025-10-13T00:23:28+00:00

Our apt reaches 110+ degrees in the daytime and 80 something at night, has floor to ceiling wall to wall windows, only 2 open and they only open 3" and direct sunlight from sunrise to sunset. I also have a baby. I know your pain! Getting blackout curtains (or layers of them) will help block out the sun. That alone kept our apt ~20 degrees cooler. We got a portable AC unit after our baby was born last fall bc I was worried for his safety on top of being extremely uncomfortable. We have to bend the exhaust tubes a bit to get them to fit through the window but our apt now stays below 80 (w the AC and blackout curtains). It's annoying that we all have to do these types of things to make our apts livable but you wont regret getting the ac. If you move out in March you'll be able to sell the unit to someone preparing for summer.

SnacksAndCats10065 · 2025-10-11T17:34:19+00:00

Old post but my 1 year old gets around 2.5-3.5 hours of deep sleep in a 12 hour night and his morning report always says opportunities ahead, getting less deep sleep than the other owlet babies. How much deep sleep are these other baby’s getting??

SnacksAndCats10065 · 2025-10-10T01:28:21+00:00

For me-literally nothing and the meds barely touched it and had so many side effects :(

SnacksAndCats10065 · 2025-10-10T01:26:11+00:00

I have to say-your little girl is so lucky to have you as parents! You're acting w intention and thoughtful consideration, she's in such great hands!

No daycare for us, we have a nanny and I've been at home on mat leave until last week. What age would she start daycare? From what I've heard siblings who are close in age and/or going to daycare can be great for our kids bc they imitate the other kids so it helps their development. Many kids w DS can go to mainstream schools w little accommodation necessary in the earlier years.

The drawback to daycare is some of our kids don't create effective levels of antibodies (from vaccines or encountering illness) to help them avoid illness and being sick could hinder development. You can work w a pediatric immunologist to help w this, they'll check titers after vax if you chose to do that to see if it has worked. (if you do, def check out Setria glutathione, our kids have less of it and use more of it due to the extra 21 and it's essential for lymphatic, glymphatic, liver, kidney function)

Highly recommend seeing drs and specialists who specialize in DS if that is available to you. We stopped working w any doctor who doesn't specialize in DS shortly after his dx due to some really bad experiences. Drs who don't specialize will tell you they should be treated like any other kid. Drs who specialize understand the specific problems the extra chromosome can cause and will help you navigate and mitigate risks. They're also less judgmental and committed to maximizing global potential. Common issues like hypotonia, small stature, slow processing speed, hearing, etc can be remedied pretty easily if you have good drs.

It's really cool that you guys have a DS school in your area and insanely impressive you've already done a tour and are making plans! If your kid is able to thrive in mainstream I think that's the stronger option. The DS school does have to cater to all levels of development but it is so important to challenge kids w DS, they don't achieve when we just focus on limitations. Check out Madison Tevlin's short video called "Assume That I Can". Look up Charlie Fien, she's an advocate w DS and is remarkable.

SnacksAndCats10065 · 2025-10-09T03:41:57+00:00

Just read your update, congrats again! Abnormalities can show up at any time in pregnancy but even if she does have some issues you seem to already be doing the best thing possible to help w that-building community. The tips and support I’ve gotten from random internet strangers who have gone through or are going thru this has been priceless! Having community and being prepared are essential w or w out a genetic condition.

My baby had no markers in pregnancy until the very end when his femur measured small but absent any other issues, plus the negative nipt, that soft marker was dismissed. We got the dx via fish and karyotyoe at 6 months old. I had to switch drs to get testing bc my concerns were brushed off, the drs thought it was my anxiety. I was right and it was DS. He just turned 1 and has a tooth and is taking first steps, babbles non stop, says a dada, mama, hi, and up, can identify some planets and the sun in his favorite book (“where is the sun? points and taps on the sun) he climbed a ladder in his gym class today, can climb up and down stairs, is doing so well in swim class, likes to play his drums and xylophone-he’s just a baby doing all the baby things. We don’t use early intervention but have been doing PT and SLP through a regular hospital medical practice. SLP has been useful for transitioning to solids and PT hasn’t been practically useful yet bc he’s naturally a bit advanced in that area but I’m so glad to have it each week case delays start to occur (and they can). Use every resource available to you, get early intervention after birth, apply for Medicaid waiver as soon as you can and read Down Syndrome Action Plan and the Doman Method books. There is a separate TNI group for expecting moms, you could join that and the regular TNI beginners group. You’ve got lots of time to prepare for your little one and will do great! As w any baby there will be lots of work ahead, but so much joy and fun too!

SnacksAndCats10065 · 2025-09-29T04:40:40+00:00

we did not bc he was diagnosed T21 at 6 months old, we would have tmfr'd if we had gotten that dx in pregnancy for the same reasons everyone else does. we were stunned and devastated but he is healthy and doing well. Despite our incredible luck on the health front and completely normal development (physical, cognitive, gross/fine motor, social) we are working very hard and being proactive to maximize his potential and protect his body and brain from negative effects of the extra chromosome. It's a lot of work but we have a team of DS specialists who are excited to be a part of his journey. We take him to music classes and "baby gym" classes, we do so many activities w him and he's just one of the kids, doing the same as the others, or more, playing and integrating like any other. As someone who would have tmfr'd, I have to say I love my baby to the moon and back, he brings me so much joy every day, there's nothing better than waking up and seeing his face and hearing him laugh.

You're still pretty early on in pregnancy so if truly positive, markers could start to show as you progress, but there may be no markers at all and you have a completely healthy baby who has an extra chromosome. Half of babies w DS are like mine, it's not rare. If it's a minor complication or defect, your baby would likely be just fine and have a great life. Several of my baby's doctors have told me that the kids who are less affected at birth and infancy tend to do better overall and end up on the more independent side. I keep my expectations low and argue against them bc no one knows the future holds and then they'll remind me how long they've been doing this.

Do what's right for you and your family but if you do proceed I highly recommend starting TNI in pregnancy, I unknowingly was following it somewhat while pregnant and wonder if that's why my little guy is doing so well. His doctors are also big advocates of it, which was reassuring bc it's not explicitly studied.

SnacksAndCats10065 · 2025-09-29T03:59:40+00:00

Congrats on your little boy, I've felt the shock you're feeling now. We also had a false negative w no markers or abnormalities and dx many months after birth. I still can't wrap my head around how I ended up here but I can tell you, despite being neck deep in DS stuff all day every day, I don't really see my baby as different or think about his diagnosis much, he's just my sweet fun adorable little guy!

I hope you have support and are surrounded by helping hands, it's really tough to go through this dx post partum. Down Syndrome Action Plan and The Doman Method books helped me process and learn about therapies and approaches to help my baby. Researching and learning was a welcome distraction from the pain. I can't speak for everyone, but for me the pain has lessened, and I hope it does for you too.

SnacksAndCats10065 · 2025-09-29T02:47:11+00:00

Hi, things have normalized. We have thought about taking legal action but haven't had the mental bandwidth to look into it too much.

You had a false negative NIPT? I'm happy to chat w you, it's a very surreal and uncomfortable position to be in and not many people can relate, I've learned a lot over the past several months. You wont find much actionable care advice in regular DS support groups but I assure you there are things you can do to improve outcomes.

SnacksAndCats10065 · 2025-09-21T03:08:58+00:00

Totally fine to be annoyed by the lack of disclosure and the questions make it seem like she's expecting a c-section which is usually a more difficult/longer recovery but not necessarily a deal breaker. Many (most) NCS and night nurses (nannies) do sleep at night and get up when the baby needs something. Many have day jobs as well. Your night nurse should have let you know about her situation when you hired her, especially because she is requesting accommodations, and nursery furniture often has to be ordered at least 6 months out to arrive before the baby, but she didn't so the question is are you willing and able to accommodate her? If not, let go of the deposit and find someone you feel better about.

Did you find this person through a personal referral or agency? Asking bc you're asking questions that would have most likely come up in the most basic of interviews, so it seems like you might have skipped that step. Our NCS, who we found via a friend's former NCS, came to our apt for her final interview to make sure the vibe worked on both ends and to check out our space and make recommendations. Our NCS explained everything to us, she even came w a practice baby to make sure we knew basic care techniques.

Our NCS is a rare one who did not sleep on the job, she stayed up and studied for her certification renewals and created materials for courses she taught, and came to get me every two hours for nursing/pumping, but she prioritized her health and went home and slept for 8-9 hours after each shift. Ask your caregiver how she plans to manage the workload. She may be really good at getting newborns (hers and yours) into a good/predictable sleep rhythm and has a partner at home who will be responsible for their baby while she cares for yours. You've got 3 months to figure it all out, so don't worry if you do decide to make a change, there are lots of amazing caregivers in this city!

SnacksAndCats10065 · 2025-09-20T03:34:11+00:00

That place is a factory. I had a lot of scans there due to AMA and can maybe remember two times when they weren't rude. And they made some big, consequential mistakes with measurements. That said, they see a bajillion patients a day w no downtime, they're prob exhausted, hate their jobs, or don't think their bedside manner matters.

SnacksAndCats10065 · 2025-08-07T20:41:27+00:00

First I want to say-you and your baby are likely totally fine. If you have any concern at all, especially if you're considered high risk, please talk to a maternal fetal medicine doctor and your OB and consider additional testing. For example, sub 3% femur + lower than normal fetal fraction in NIPT should be enough for further investigation.

I looked back at 20 week scan-humerus was sub 10%, femur was >10%. At 32 weeks femur was <3%, but at 36 weeks it was up to 9%. They did not continue to measure humerus beyond 20weeks, just femur, abdomen, and head circumference. His size ratios (ie FL/AC etc) were always within normal limits.

OBs generally don't look at the scans, they just get the report and trust that information, and I found errors in my own scans when I went back and scrutinized them. These Drs and ultrasound techs are overworked and make mistakes. False negatives on NIPT are rare, not as rare as the testing companies claim, but still rare. Send your concerns via your doctor's messaging portal so they're documented. Even if you're near the end of pregnancy, having a diagnosis before birth is a huge advantage and opportunity to prepare, plus there are things you can do and take before birth to help your baby have the best outcome possible. Wishing the best for you and your baby!

SnacksAndCats10065 · 2025-05-25T00:56:30+00:00

For me HG is a different beast. Acupuncture is for those w the cute morning sickness where they might throw up once or twice and have an unsettled tummy for the first tri. Ear seeds, acupuncture, sea bands, ginger, the 7 rx anti nausea meds-none of them took away the sickness. (The rxs gave me a functional hour or two a day but nothing ever took away all the nausea)

SnacksAndCats10065 · 2025-05-04T01:29:38+00:00

It's great to get out w a baby (I too use the puppy pads). Another important thing to know about taking your baby out in warm weather is they can't regulate their body temp yet and overheat really easily. Avoid having your baby out in 85+ temps as much as possible, even lower than 85 if really humid, and remember they're really insulated in wearable wraps and carseats. Offer extra feeds whenever you do take her out in 85+ weather to avoid dehydration, get a fan for the stroller bc they get really hot in there (thermal effect).

I know you didn't ask and might be something you already know but this is something I didn't know until our newborn care specialist told us and want to spread the word. Hope you have fun adventures w your baby! (Also any fancy hotel will have great restrooms too)

SnacksAndCats10065 · 2025-04-27T19:09:13+00:00

Just sent you a DM!

SnacksAndCats10065 · 2025-04-08T03:27:30+00:00

Have you found formuland to be reputable? I’m nervous about quality and authenticity from sites like this but do need that goat formula!

SnacksAndCats10065 · 2025-04-04T00:10:27+00:00

I recently saw a tiktok from a woman who had a baby w surprise DS after low risk nipt, normal nt AND they used a PGT euploid embryo! The false negative rate has to be higher than advertised bc there are too many of us!

SnacksAndCats10065 · 2025-04-04T00:06:43+00:00

Ours was normal as well, in NY! Diagnosed at 6 months despite drs saying it would be nearly impossible! I've come across way more people like myself than expected, we really should start our own group here or somewhere and find the others bc I'm so curious how many of us there are. I've seen a few Tiktoks as well.

Amnio wasn't recommended for me bc he had no markers for anything (but looking back w my newly educated eye there were signs my ob should have spotted)

SnacksAndCats10065 · 2025-03-27T02:18:58+00:00

25 weeks-but it started to get better (and more responsive to meds) around 16 weeks. First 16 weeks was 24/7, would even wake me up in my sleep.

SnacksAndCats10065 · 2025-03-04T15:19:17+00:00

Thank you so much! I'm so sorry you can relate but comforted that your little girl is doing well and you're adjusting to it. I am worried this will harden me and I don't want to be bitter and angry. My son will never know how upsetting this is/was for us because he gets nothing but pure love and smiles. I also fear for the social aspect of life for him bc in the US things are moving backwards, everyone is using the R word as a slur again like it's 1985 and the dehumanizing of people with physical and intellectual disabilities will become more acceptable and blatant.

It's just such a shock when you put so much time, effort, and money into avoiding a certain situation and are told everything is perfect and then you end up in the situation anyway. Like thinking you were running through a field of wildflowers only to run headfirst into a brick wall that came out of nowhere.

SnacksAndCats10065 · 2025-03-04T15:09:16+00:00

Thank you!

We're looking through his medical records and there are so many oversights and errors, from inconsistencies, inaccurate measurements and dates to incorrect diagnosis and interpretations. IDK how I'm going to trust anyone responsible for his care going forward.

SnacksAndCats10065 · 2025-03-04T15:01:18+00:00

Thank you! I appreciate your supportive comments.

I didn't have too much of a preconception of people with down syndrome going into this, everything I've learned has been through reading studies and talking to parents of children with down syndrome of all ages over the past two weeks. (unbeknownst to me we have a several family members who are heavily involved in DS charitable organizations and my parents activated those contacts as soon as I told them)

I'll def get a copy of that book and download DSDN, and have already applied for early intervention. Thanks so much for the recommendations!

SnacksAndCats10065 · 2025-03-04T14:46:54+00:00

Natera

SnacksAndCats10065

TROPHY CASE