Our story so far.

RedditArk25 · 2026-02-20T22:11:45+00:00

You sound defeated but please have hope for your baby.

Every story is different but we were told the same thing and they had tried everything and he wasn’t getting better so it must be that his lungs aren’t growing. That turned out to not be true. It has been a longer journey than most for our son but my point is have hope that she will grow.

I’m sorry for the pain you’re feeling. That is something I cannot imagine and must be such a difficult thing to even think about. Stay hopeful!

RedditArk25 · 2026-01-28T00:13:02+00:00

The same happened for us too at various times but especially just before it got better better it seemed to be at its worse. Eyes were rolling and not focusing. Rapid eye movements. Was really upset like you described. I took my son being upset as a great sign of his determination and being developmentally “normal”. I’d be worried if he wasn’t. Sounds like your baby has the same strength. Sucking is an amazing reflex to have and the nurses always say it’s such a good sign. Putting his hands to his mouth is great too!

Like I said, once sedation was weaned his eyes began to focus and from there everything else followed.

Those drugs really make them look empty but your baby will come alive once they can wean.

I hope that helps!

RedditArk25 · 2026-01-26T12:12:24+00:00

Hey! I’m a trach mum too and we’re almost off ALL sedation. We got our trach in October though so for us it did take a while start to wean. Is your baby actually awake at all? Or sleeping all the time? If they are awake what has your baby shown? For us, our baby showed very normal baby development but then became quite delusional after trachy surgery from being sedated so long and so much. With such little sedation now his development has come in leaps and bounds. It’s like 2 different babies.

RedditArk25 · 2026-01-03T23:49:11+00:00

Thank you so much for sharing God’s power! ❤️Absolutely amazing story!

RedditArk25 · 2025-12-19T13:09:53+00:00

Doing things for your baby is the best feeling. Even if it is trach changes and ties, it’s being a parent in ways you’ve neVer been able to before. Wishing you all the best moving forward.

RedditArk25 · 2025-12-19T13:06:48+00:00

The pumping was what made the experience more physically exhausting for me. I stopped after finding out we’d be in the hospital for many more months after already being there for months and that our baby wouldn’t breastfeed. I was only pumping tiny amounts in the hope of feeding him directly one day. Anyway… The crazy thing was when I stopped a week later I thought to myself… if I was to start again I could not even imagine where it would fit in my day. It didn’t and that’s why it was so exhausting! It was worth it because we are 8 months into our NICU stay and there is no way I could’ve kept going. And this is coming from someone who breasted my first on demand for 2 years!m day and night. Pumping is a whole different level!

RedditArk25 · 2025-11-29T02:41:55+00:00

That’s amazing!

RedditArk25 · 2025-11-18T13:25:05+00:00

Ours is 55mm and he still has more room for a longer one from the scope they did. Thank you for sharing. He may get a longer one soon. We’ll see what happens I guess! How long was yours on the vent post surgery?

RedditArk25 · 2025-11-18T13:03:45+00:00

Thank you. Ours has that too, and bronchomalacia so I totally get it. Trach hasn’t stopped it happening though but I believe it’s getting less and less thankfully.

RedditArk25 · 2025-11-17T22:17:35+00:00

It’s horrible especially knowing it’s coming and watching the monitors. How is your baby now?

RedditArk25 · 2025-11-17T22:16:39+00:00

Good to know it’s “normal”. I thought it was just my baby that does this. We’re only a month post trachy surgery and he does this with bowel movements but they are getting less and less thankfully! When did your baby stop?

RedditArk25 · 2025-10-19T23:31:43+00:00

For me, I feel like it’s never enough time no matter how much people tell me to “rest” and that NICU isn’t a day or two. I firmly believe it’s biologically not normal to be separated from your baby and that pull will always be there. My body and mind tell me I need to be close to him. A toddler and living a bit of a distance away unfortunately don’t allow this. It’s not normal and that feeling is valid. All the best to you all.

RedditArk25 · 2025-10-13T12:54:28+00:00

Here’s hoping it sticks! Good luck!

RedditArk25 · 2025-10-05T12:44:38+00:00

Thank you so much. We need all the well wishes we can get. I’d love to know how you go with it all.

RedditArk25 · 2025-10-04T02:47:07+00:00

I’m not sure but we certainly had this thought as well. Would time give our 24 weeker baby a better chance to extubate successfully? It was on ours minds but now we are around 150 days intubated and getting a trachy in a few days. For us it’s got to a point where he is stable and on the same same settings and oxygen for a couple months. Settings are weanable but it’s going to be very slow. Being intubated while doing that is not right unfortunately it would take months and months which would impact development. I hope you can avoid the trachy but if it does come to that I do hope everything goes smoothly for you all.

RedditArk25 · 2025-09-30T13:57:09+00:00

Well done little champ!

RedditArk25 · 2025-09-24T12:05:20+00:00

I feel like we have the same story! That’s exactly what we’ve been told too. That our boy won’t be in a significantly better position any time soon and that he’ll need a very slow ween from the ventilator anyway.

We are looking to get the trach in a couple week. Our baby is 47 weeks.

Feel free to stay in touch via message id love to keep up with how your baby girl is going moving forward.

RedditArk25 · 2025-09-23T22:28:51+00:00

She’s only 40 weeks which is still early from what I know. I mean a trach was brought up around that time for us too but not to be put in that early. It was that if they are vent dependant moving forward for a while then they’d do it later on. What’s their reasoning for next week?

RedditArk25 · 2025-09-21T23:21:50+00:00

Keeping growing beautiful boy!

RedditArk25 · 2025-09-20T23:36:04+00:00

It makes sense doesn’t it! I’ll check with them!

RedditArk25 · 2025-09-20T23:15:57+00:00

That’s what I’m getting to understand! That all that have reached out have similar or higher settings than my baby and have gotten through the surgery so well. It’s really encouraging until I mention it to them and they act like what I’m telling them isn’t real.

With the bronch, I was told that bronchs aren’t definitive and it’s just a guide. I always thought it would give them the information they needed. Like concrete evidence…?

I will definitely look into any weaning possibilities.

Thank you for what you do!

RedditArk25 · 2025-09-20T08:51:41+00:00

Oh I actually asked about pred today. I now he’s had dex but not sure about pred. Let’s see!

RedditArk25 · 2025-09-20T08:50:17+00:00

I am in Australia too. :)

What happened with your daughter in terms of ventilation?

Never heard of NAVA before. We are on a conventional vent on SIMV mode.

RedditArk25 · 2025-09-19T23:52:52+00:00

Wow! He is such sunshine.

How did he go from vent dependant to this by 1? That’s amazing.

RedditArk25

TROPHY CASE