“Why does Jaxon have a tube down his nose?

Firstly, it’s a Nasogastric tube also known as a NG tube. It goes up his nose, down his throat and ends in his stomach. It is for his milk and medications.

For general information on feeding difficulties see NHS Dysphagia. This link explains general swallowing problems in both adults and children, causes and treatment. Everyone with a feeding tube is different.


Jaxons Feeding Story

History:

Jaxon was originally breastfed.
When he had Jaundice in his first 48 hours he was cup fed top ups.
During our first hospital stay Jaxon had NG top ups in hospital  due to weight loss.
He was then bottle-fed expressed milk due to continued weight loss/poor weight gain so that we could monitor the amount he was taking.
After our first long stay we were discharged with him fully bottle fed, he also had a lot of medications all of which he took orally.
When he became ill and had another stay in hospital he was again NG fed.
Discharged again back to full bottle feed.
His third long stay in hospital in November he was discharged with full NG feeds following urine infection and bronchitis.

Possible causes:

⁃ congenital CMV has caused cysts on his brain and so this may have caused neurological problems feeding

⁃ 1p36 deletion gives him hypotonia which may aid difficulty feeding and is linked to feeding difficulties

⁃ His heart is making it difficult for him to feed as it is hard work for him tiring him out

– He also has respiratory dysphagia as a symptom of his hypertrophic cardiomyopathy meaning it’s difficult for him to breathe when sucking a bottle.

Symptoms/Problems when feeding:

When attempting to feed Jaxon he:

  • moves away from the bottle
  • doesn’t close his mouth around the bottle
  • sticks hi tongue out around the side of the bottle
  • chokes
  • dribbles the milk straight back out
  • sucks and doesn’t get anything
  • sucks, swallows and then needs to catch his breath

Plan:

This week, tube feeding awareness week (what great timing), we were finally seen by a speech and language therapist to assess his feeding difficulty. After almost two hours in the office with the therapist observing my attempt to bottle feed, seeing him attempt solid food, observing his swallow and lengthy conversation of the history, medical issues and any concerns we both have, it was determined he is not currently thought to have an “unsafe” swallow and therefore is not nil by mouth. A plan was made:

⁃ Try gently with a bottle before every feed if he’s well enough (not too sweaty and working hard to breathe), let him have three sucks then pause for him to catch is breath. This is called pacing.

⁃ Try with solids 3x a day, tiny amounts (jut enough to taste) for 5 minutes with breaks in between tastes

⁃ Dip dummy in milk 5x during NG feeds to associate his full stomach with a taste and get him familiar with flavour

⁃ Referral to Occupational Therapy for a special chair to help with his posture for feeding as he is still floppy with little head control

⁃ Videogram referral to Sheffield – this will show us if there is a physiological problem with him swallowing

⁃ Next appointment in two weeks to discuss progress


So that’s a little and very quick peak into Jaxons tube feeding story. Hopefully that explains well enough for you to understand that there are many complex and basic medical, physiological and nutritional factors to a baby needing to be tube fed. Some examples from Jaxons story are weight loss, illness causing a lack of interest or ability, muscle tone, nutrition, medication and many more. A lot of babies have an unwell episode which involves a hospital stay and then after being tube fed they just never go back to bottle feeding. Lets face it, if you got hungry and your stomach magically filled, would you bother putting energy into physically eating? Whats the point? 

Tube feeding saves lives. Hydration, nutrition, weight gain, medication are all things babies can’t live without.

LOVE THE TUBE! PRAISE THE TUBE!

Also read: The Pros and Cons of tube feeding. Yes there are PROS!

4796730208_IMG_1094Thank you for reading.

I’m happy to answer any questions you may have about anything written in this blog post. If you think others could benefit from reading any of my reality then I am happy for you to share it with them – you never know who they could help or how.

Please comment with your thoughts and opinions reading this. Your feedback is what keeps me posting and writing is proving to be a helpful therapy for me right now. A therapy I wouldn’t be indulging in without your interest!

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