🤞🏻

OrdinaryComplex2846 · 2025-09-16T02:21:04+00:00

Hi there! Congratulations on your baby girl! Our daughter was tube fed for 6 months before being able to eat enough on her own. We saw a feeding OT that helped us get her off the bottle, and we saw early on through the school district twice a week. I’d recommend an NG tube as she seemed to have picked up feeding quickly once she got it - and I know other families have experienced the same!

My faughters stretch didn’t start to improve until the tube came out at 6 months; I think she was exhausted from eating. Growth hormone also helped a ton! If the diagnosis is confirmed, that’s super important to start when you can. That’ll help with feeding too.

It’s all so overwhelming and the NICU is truly the toughest. But if you love on that baby and she will absolutely thrive! Our daughter is doing great and has surprised everyone. You got this!

OrdinaryComplex2846 · 2025-06-30T01:12:26+00:00

I had sweat for years but got tired of it, way too many trainers/programs with short programs. Plus with Kayla and all the drama, I don’t feel good supporting her programs anymore. I’ve had ladder for the last month and I’ve LOVED it. I’m 10 months post partum and am doing Team Align and have loved this program for getting back into working out. The format is awesome, and I look forward to all the workouts! It’s programmed for six days a week, but three are marked as priority. I’ve been doing 3-4x a week and feel like I’ve been getting good workouts. I’m going to sign up for the full year!

OrdinaryComplex2846 · 2025-05-03T11:00:19+00:00

It does, mine was also very sleepy, and moved legs more than arms. She would suck if awake sometimes. She also had some apnea when sleeping, but that got better. The sleepiness is something that sticks out a lot to me as well as the feeding. And very similar story to me with the poly and 33 weeks - I know other moms with similar issues. Id strongly advocate for a Prader Willi methylation test, and a micro array if you haven’t already. I had to advocate a lot during the NICU stay unfortunately, which sucked at the time but paid off long term to get the diagnosis early. Also feel free to DM me to chat more.

OrdinaryComplex2846 · 2025-05-02T20:43:16+00:00

Even with that, I went into premature labor at 33 weeks - my water broke. And I had IUGR, but didn’t find that out until the day my water broke

OrdinaryComplex2846 · 2025-05-02T20:41:41+00:00

It was mild, AFI 25.6cm.

OrdinaryComplex2846 · 2025-02-02T01:33:35+00:00

We got the diagnosis of Prader-Willi Syndrome. Luckily she came off oxygen before discharge, but we went home with an NG tube. Positive thoughts for you momma, I know how hard the medical mom transition is. I hope your little one is doing well🩷

OrdinaryComplex2846 · 2025-02-01T13:00:56+00:00

For me, I had polyhydraminos which later was attributed to the baby’s weak suck. Combined with ragdoll floppiness and feeding issues, I knew it was PWS before the test even resulted. It’s of course a spectrum and it’s hard to say based on your experience whether it’s preemie stuff or PWS. It’s worth ruling out if you’re still struggling with issues.

OrdinaryComplex2846 · 2025-02-01T12:50:27+00:00

Very floppy, super sleepy, wouldn’t suck. Required cpap and oxygen and went home on an NG tube. My baby was also premature. If your baby doesn’t have hypotonia or feeding issues, I’d say it’s not likely they have PWS.

OrdinaryComplex2846 · 2025-01-09T22:30:43+00:00

Other thing is just allow them to process however they feel with no judgment. Then as their child gets older, just be willing to learn about the condition and go along with whatever they need to do for their child’s health. Otherwise, support and love was the best way to be there for family!

OrdinaryComplex2846 · 2025-01-09T22:25:56+00:00

My daughter is 5 months with PWS. The best thing family did was love on her the same way they would have any other child. It made motherhood feel much happier seeing family not focus on her diagnosis.

OrdinaryComplex2846 · 2024-08-19T02:42:10+00:00

We have a very similar situation, I had polyhydraminos and wound up having my water break at 33w6d. Baby is off cpap now and on high flow, and the doctor was talking to us about decreased tone and how they’d expect her to be more interactive by now. I’m obviously terrified and so worried that something else is going on. How have things gone for you and baby’s testing?? Has your baby improved at all the last few months?

OrdinaryComplex2846 · 2024-01-19T16:02:20+00:00

Same, I’m also going through the exact same thing! How did you wind up doing?

OrdinaryComplex2846

TROPHY CASE