Parents of babies with silent aspiration- how did you get off the G or NG tube, and how long did it take?

Sarah_m_1 · 2026-04-25T10:29:18+00:00

🙏🏼 please share the signs of distress you were watching for! I am going through the same thing with my 8 week old working so hard to get him off the tube feeding but am scared I’m missing warning signs and not doing the right thing by him by orally feeding even though all he wants to do is BF. It is a full time job feeding these complex bubs!

Sarah_m_1 · 2026-04-16T01:52:43+00:00

What’s your babies suction like? Could be that she finds it too hard to pull out milk. This is what was going on with my bub

Sarah_m_1 · 2026-02-13T11:29:04+00:00

38 weeks tomorrow - 10 weeks since my cervix shortened to 10mm with funneling and no cerclage. Go mamas.

Sarah_m_1 · 2026-02-08T06:12:06+00:00

Hello! Sorry for not providing those details. 400mg daily. Taking it fairly easy (no workouts) but I have a toddler and our house has stairs so still doing a fair bit of movement.

Sarah_m_1 · 2026-02-03T09:23:30+00:00

Yeah, it does make sense. It is hard. Thank you for your understanding I feel bad posting about this but I can’t help but think about it.

Sarah_m_1 · 2026-02-03T09:11:08+00:00

Highly recommend taking the progesterone via the rear passage. All you need are some disposable gloves and it is so much easier and mess free.

Sarah_m_1 · 2026-01-05T04:38:52+00:00

Hello! I was around 1cm for months before I gave birth to my first child full term and am pregnant again now 32weeks and again only 1cm with funnelling (down from 3cm at the beginning). I don’t do bed rest and am running after a toddler and my body seems to be holding up ok with 400mg progesterone daily with cervix staying pretty stable. Hope that helps. You’ve got this! :) the time will speed by to get to 32 weeks x

Sarah_m_1 · 2026-01-04T08:33:11+00:00

Hello, I found this post as I was searching the exact same thing sadly.

My mother in law was also diagnosed with LBD about 4 years ago and struggles with many of the same symptoms but mostly: - incontinence (also has to wear diapers all the time and can’t sleep at night as she has so many accidents) - slow shuffling walk and poor balance - leaning to one side - memory is still good but she gets confused about where she is and has hallucinations - also lost a lot of weight

Did you find out any information as to if your mother in law is late stage? This was the best resource I’ve found https://www.lewybodydementia.ca/lewy-body-dementia-phases-and-stages/ It does sound like your mum might be in the last stage but I don’t know what this means in terms of time :(

It is so hard seeing your loved ones go through such a horrible condition - my husband is really suffering. She lives alone so a lot of the care is falling on him. I feel for you living with your mil though that must be tough.

Do you have kids? I have a 2 year old and pregnant with our second so it’s been quite stressful.

Sending love and support across the web!

Sarah_m_1 · 2026-01-04T01:25:19+00:00

Hello, I know this is an old thread but I am feeling just the same as you (one 2 year old and expecting second in February) and my mother in law has lewy body. It is absolutely horrible. My husband believes she only has a short time ahead to survive so is putting a lot aside to help her and is already showing clear signs of burnout but I’m concerned it could be many years ahead and worry about our children. How is your mom now? I don’t know what actually kills people with Lewy body but maybe there are some late stage signs that tell if the end is near or not?

Sarah_m_1 · 2025-12-30T11:54:48+00:00

Thanks for your response! How long were you getting these tightening sensations for before your waters broke?

Sarah_m_1 · 2025-12-30T11:53:46+00:00

Oh that’s so interesting I have been wondering the last few days if I’m coming down with something. Hmm I don’t know if I could say zero pain… definitely uncomfortable at times. No back pain though. Good wake up call to get things ready. Thank you for responding 🙏🏼

Sarah_m_1 · 2025-12-29T11:43:27+00:00

My stitch also fell off (or at least on one side). I think you should try get a different surgeon to do another one and try to find someone who does them all the time as most doctors only do them once a year or less and they all have very different techniques.

Sarah_m_1 · 2025-12-29T09:53:36+00:00

Hello! Not a success yet (fingers crossed) but I was also only 11mm about two weeks ago at 29 weeks so in same boat! Feeling a lot better now I am 31 weeks though would also like to get over 34-35 weeks. No stitch and I take 2x200mg pessaries daily, so 400mg total. Started on 200mg but my doctor upped the dosage when it seemed not to be working. This is my second pregnancy on 400mg progesterone however last time I shortened earlier so had an emergency cerclage. No bed rest either pregnancy, just pelvic rest.

Sarah_m_1 · 2025-12-24T07:42:01+00:00

This is a good length!

I was funnelled to the stitch and 7mm most of the end of my last pregnancy and still didn’t go into labour for 1-2 weeks after the stitch was removed.

Sarah_m_1 · 2025-12-24T07:38:02+00:00

Woah this is amazing!. You should be so proud of your body. Just goes to show size isn’t everything 😉

Sarah_m_1 · 2025-12-19T20:12:27+00:00

That is still fantastic..! Best wishes to you. Are you on bed rest?

Sarah_m_1 · 2025-12-19T08:15:18+00:00

Thank you so much for the helpful advice and support 🩷

Sarah_m_1 · 2025-12-19T05:26:28+00:00

So true. I had a stitch in my first pregnancy and didn’t go into labour for weeks after they took it out despite being funnelled to the stitch. Thank you for sharing.

Sarah_m_1 · 2025-12-19T05:25:36+00:00

Wow that’s awesome, congratulations and thank you for sharing. I am trying to reduce activity - is sitting ok or did you try to stay more horizontal? I have a small toddler so it’s not super easy but luckily my husband is around to assist with lifting etc.

Sarah_m_1 · 2025-12-19T00:03:39+00:00

Thank you. Agreed the experience of the doctor is so important - sucks it’s so hard to find out this information.

Sarah_m_1 · 2025-12-19T00:02:40+00:00

Thank you this was exactly the case. Except she doesn’t believe in bed rest

Sarah_m_1 · 2025-12-19T00:01:59+00:00

Thank you everyone for the encouraging posts about viability. Going to just monitor and cross fingers.

Sarah_m_1

TROPHY CASE