baby’s w/ disabilities

hi ladies my therapist had recommended i reached out to fellow moms who’ve gone through similar experiences and would have advice or just have someone to talk to ab it. My baby girl had came at 5 months and has been in the NICU since the end of june. We’re getting closer to talking about taking her home where she’d have to leave the hospital with a shunt device in her head and a trach. I was looking for any moms who’s babys have either device and would be willing to talk about it and have any advice for what future care especially the first few years. Thank you so much from me and baby Evangeline ❤️‍🩹

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Highly recommend connecting with someone through this organization - Born Abel. They're the best https://bornabel.org

I messaged you

I don’t have any experience, but just to say she is sooo cute and a fighter too. And so well done to you, you are a mum hero ❤️

Hey girly. HMU

@Marian thank you!!!

@Moon thank you sweets 🥺🥺

Definitely find some Facebook groups as they’ll be more active. My son had a shunt from 11 months old to 2.5 years old. There wasn’t anything we had to do with it at home. We just kept up with his drs appointments where they’d do an mri to make sure it was still working. Seeing the bump in his head was hard but when his hair grew back we forgot about it most of the time!

@Kellie do you have any group recommendations?? i know for sure the trach there’s home care i have to do with a nurse and i was kinda nervous ab that.. now they had made it seem like it was a permanent thing but that gives me hope how has been his development??

As an ex itu paeds nurse, there will be extensive training given to you as parents before youre comfortable to go home with the Trachy. And I wouldn’t see it as a permanent thing at this stage, majority of babies I’ve seen with them have them reversed at some stage when their airway development is better. Sure it all seems very daunting now but soon it will become second nature, it’s crazy what people can get used to!

She’s precious. I I don’t have any experience but here if you want to vent.

I'm a trach mom. And my daughter also has a g tube. My daughter was in the hospital until 9 months old and I can honestly say it's very challenging but day by day and week by week it gets so much more easier. Please feel free to reach out I'm always open to questions or even just venting about it. ❤️

@Fedele thank you so much i appreciate it!!!💘💘

@Ceci thank you so much i’m gonna dm you 🥰🥰 were have a care conference today regarding next steps with the trach i know my mom has been asking whether or not she’s going on a g tube but we haven’t had any clear answers im just nervous im gonna mess up

@genesis allondra I'm going to message you ❤️

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