Pen Pal: tube feeding & the #newnorm
#TeamFeed are delighted to introduce you to Chelsea who shares her experience of being thrown into the world of tube feeding.
When I was pregnant all I could think about was breastfeeding my baby. I had read about how it was the best thing for him, how it would help us bond, that it was better than bottle feeding etc. When Logan was born we found out he had Charge Syndrome. Part of this condition meant Logan had a facial palsy and unsafe swallow. In a second my options were taken away from me, the option of breastfeeding AND the option of bottle feeding. From the moment he was born Logan was fed with a Nasogastric (NG) Tube (a tube that goes down his nose and throat and into his tummy). Becoming a mum for the first time, with a sick baby, living in a hospital for 3 months and being thrust into a world of surgeries, medications, medical equipment and tube feeding was terrifying. Tube feeding was something his Dad and I learned how to do fairly quickly as we knew we couldn’t take Logan home without being trained. Logan’s nurses taught us how to give feeds and medications via the tube and change the plaster on his face securing it. An external educator trained us on how to use Logan’s feeding pump. It was extremely overwhelming at first but after a while tube feeding became our normal and I wasn’t scared of it anymore. I realised that Logan was being fed and that’s all that mattered regardless of how it’s achieved.
Thanks to his tube, Logan was getting the nutrition he really needed to get him strong enough to undergo open heart surgery. The constant struggle with the tube was Logan pulling it or spewing it out.
His Dad learned to pass the tubes on Logan so when this happened it wasn’t a trip to the hospital. Another challenge was how much people would stare. Whether they meant to or not, when someone stared at Logan’s tube, his pump or watched me draw up syringes of medication, it was uncomfortable. Once I became more confident with feeding Logan outside this didn’t bother me as much, although I also became more confident at explaining to people why Logan needed his tube if they did stare for too long. When Logan was 16 months old he went for his PEG (tube directly into his stomach). This has been the absolute best thing for Logan as the tube cannot be removed (unless by a surgeon). So he no longer has to go through the horrible time of having a tube passed down his nose. Whilst we knew we wouldn’t be able to feed Logan orally any time soon, the downside of the PEG meant another surgery for Logan.
Whether it’s an NG Tube or PEG each tube meant Logan is able to get all the nutrition and medication he needs. Tube feeding has become our normal and hopefully one day Logan may learn to feed without it but until that day I will continue to be grateful that Logan is able to be fed regardless of how it is done.
Our top tip for NG Tubes: Try and position the plaster as close to the nose as possible. If there’s a slight gap, we found Logan’s tiny fingers would accidentally pull the tube out.
Our Top tip for PEG: Try and learn the maintenance of the tube yourself as soon as you can as it makes it easier in the long run rather than relying on nurses having to come to your house to do it.
Logan’s Feeding Journey
A very long complex journey. He came home at 14 weeks old and was on a continuous feed for 24 hours a day. This was a drip feed of 30mls an hour because he couldn’t tolerate any more than that. We have subsequently tried bolus feeding many times. This is about 6 feeds of 60mls plus an overnight feed. But we always ended up back on continuous feeds. After his heart surgery last year, his reflux slowly started to settle down and after a long year of working with his dietician, he’s now on 3 feeds a day of 165mls fed over an hour and a half.
An hour and a half is still a long time for a feed when you think that a baby would drink a bottle in 5 minutes. But honestly, he has come so far! We are slowly chipping away at the time so that hopefully he feeds over a shorter time.
