If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

A premature baby that’s NG fed

Options
Dbra987
Dbra987 Community member Posts: 2 Connected
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. 

Comments

  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
    Options
    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 :)
    Scope

  • EmmaB
    EmmaB Community member Posts: 263 Pioneering
    edited July 2019
    Options
    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
  • Dbra987
    Dbra987 Community member Posts: 2 Connected
    Options
    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_Scope
    Adrian_Scope Posts: 11,393 Scope online community team
    Options
    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.
    Community Manager
    Scope
  • Matt_Scope
    Matt_Scope Scope Posts: 56 Pioneering
    Options
    @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
Complete our feedback form and tell us how we can make the community better.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.