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A premature baby that’s NG fed

Dbra987Dbra987 Member Posts: 2 Listener
edited July 2019 in Parents and carers
Hi, I’m desperately trying to find other parents of NG fed babies of premature babies and some stories of when the NG was removed. My son is 8 months young and I am feeling frustrated I really want to move forwards and I feel like we are not making any progress. Any advice would be appreciated. 

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Good morning @Dbra987 and welcome to the community! I imagine this has not been easy at all. Do you have much support around you? I hope someone on the community is able share their experiences with you :)

    If there is anything else we can do to help then please do let us know :)
    Community Partner
    Scope

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  • EmmaBEmmaB Member Posts: 263 Pioneering
    edited July 2019
    Hi @Dbra987
    I wonder if you might have more joy by finding a more specialist group on Facebook particularly if your baby has a diagnosed condition and/or one which is quite rare? 
    I say that because I have a very rare disability myself and it would be unlikely that I'd find someone on this group, which is great for more general support, but I did find a group of people with exactly the same disability as myself on Facebook and it's really helpful for asking very specific questions like the one you have around NG feeding.
    There is also Contact A Family, now called Contact: https://contact.org.uk/
    I have a disabled son so I know how stressful it is so I hope you find some support that help.
    Best wishes.
    Emma
  • Dbra987Dbra987 Member Posts: 2 Listener
    Thank you for the reply. I’m on a few Facebook groups. I was hoping this would be another channel. It’s great to have different support. But thank you for your response, i really appreciate it. I’ll look at contact too. 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    Hi @Dbra987, welcome to the community. Really glad you've joined us. :smile:

    Have you been given any indication as to when they'll be removing the NG tube?

    My youngest had various conditions as a newborn and was classed as 'failure to thrive'. Although we managed to avoid the NG route, we spoke with a lot of families on Facebook, whose children were NG-fed for various lengths of time.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • Matt_ScopeMatt_Scope Navigate Posts: 56 Pioneering
    @Dbra987 I was wondering if our Navigate service in which I work would be of interest to you.  this service offers 6 weeks of support specific to individual parents of any children (or babies), who have been diagnosed in the past year.  If you feel that this service may help, there is an online application process through Navigate on the Scope website or you can access the service directly by calling our coordinator Tom, who will be able to allocate you to an advisor to work with you individually.  You can refer yourself in this way by calling 0808 801 0510
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