From our personal experience, I would like to share with you some tips that would be helpful to new NG Tubie parents.
Never forget you cannot pack too much!! Always remember when your going out whether it be for an hour or all day to pack more than you need - this includes giving sets and bottles.
We have a bag for Arthur’s bits, which has all his essentials we may need to change, replace and maintain a clean and well presented NG tube.
Because your baby is tube feed that doesn’t mean it can’t look cute and tidy!!
Summer is nearly here and many of us are thinking about holidays!
Pre planning is key when travelling with a Tubie!
We have listed some tips that would make your travels slightly easier.
Having an unwell child in hospital, or having to undergo various tests, treatments or even an operation can be one of the most stressful things for a family to experience.
This can be a confusing and stressful time for the child and their siblings if they have any.
We spent a lot of time in hospital with my little girl. Her brother, 2 years older, was very confused, upset and anxious about the whole situation. One day he even said "Why did you choose this sick baby from the supermarket mummy? I don't see you as much now!".
Bless him! he had all the attention then BANG new baby that was not well and now mummy in hospital all the time.
Hearing him say that was so heart breaking and since then we used social stories with him to explain his sisters condition, what to expect, why mummy spends so much time in hospital etc.
Our social stories focused on subjects we were experiencing. This was a great fun, visual and interactive tool to use with our son to help him understand and cope with everything that was going on.
Hello, I’m Zayne and I would like to share our feeding tube journey with you.
In 2010 we were blessed with a beautiful and very special baby girl who was born with very complex respiratory and gastro medical issues making her number 7 in the world with her unique genetic condition called "Duplication 22q12q13".
At first, our gut feeling was saying something is not right. She wanted to sleep 24/7, hardly cried and was not really interested to feed. I tried breast feeding, bottle feeding, yet still she was not keen.
We took her to the baby clinic and the GP said she seems fine and dismissed our concerns. In despair, we contacted GOSH and booked a private appointment to see the Gastro team. As parents, we could not just sit there and do nothing. Something was definitely not right!