Living with Cerebral Palsy 🍋🍋

Friday, 10 February 2017

Riding the tube..

So it's 'Tube Feeding Awareness' week apparently and in the malaise of awareness weeks that the double-edged sword of social media has brought to us, this is one I can most definitely get behind. When I was pregnant I thought the only feeding choices for my baby were breast or bottle. Quite a contentious debate amongst midwives and mum's, I figured I would breastfeed if I could but not beat myself up if I couldn't. Sorted. Turns out I never got the chance to do either, since Elin's brain damage at birth affected her suck and swallow reflex so profoundly that she became and remains a tube-fed little warrior. I hated this fact for so long, that the bonding of feeding was yet another thing that had been robbed from me as a first time Mum. I seriously couldn't even look at babies feeding via breast or bottle, I couldn't beat the jealousy, it killed me. Elin had a nasal tube until she was strong enough to have a gastrostomy tube (a feeding tube fitted directly into her stomach) and until that time she was weak, vomiting continually and suffering from dreadful acidic reflux. Her nasal tube popped out so often (as she vomited) that the home nursing team taught me to pass it myself instead of having to go to the hospital for it to be done. Not a nice task since if you get it wrong you could be pouring milk directly into her lungs and drowning her from the inside!!! Try adding THAT little gem to a list of new-mum anxieties. Out of necessity, I became a bit of a pro but would crumple in a heap, shaking and crying every single time it was done. I couldn't believe I had to do that just so I could feed my baby. I was distraught and there was zero advice in any baby book I could find about how to deal with the situation. No tube-feeding mum support groups in my area (or anywhere! ) and not a single poster or leaflet offering friendly tips on feeding your newborn could I find, unless of course you had the serenely magic breasts or the handy bottle. I was invisible to the new-mum system. But you know what? I came to love the tube, the way it saved my daughter and helped her thrive. I slowly realised in the face of all the continued arguments about breast vs bottle that people were missing the point, essentially. It's fed that is best. I was bonding with Elin in so many other ways, maybe the feeds weren't such a big deal after all. She got plumper by the week after her gastrostomy (g-tube) was fitted and her quality of life improved immensely. How could I hate something that had given her all that? We have no stress over how much she has been drinking, there is no chance of her medication not being digested and we can control exactly the amount of nutrients she receives daily. When she is poorly, we can keep her hydrated easily without having to frantically try and persuade her to drink and I never have to worry about choking. So, as 'tube feeding awareness week' draws to a close, all hail the tube I say. If you see a mum out and about using a tube, ask them about it. The science behind it is quite fascinating and you might just make them feel a little less invisible, don't snap your head away as though open heart surgery is being performed on the sofa in front of you at Starbucks. I know I would always be happy to fill curious people in. It's only a tube. It keeps my daughter alive each day, it's a godsend. As for Elin herself? Of course she couldn't care less :-) Happy weekend folks.
My baby bunny in 2008 :-)

Mummy Times Two
My Petit Canard
xxxxxx

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14 comments

  1. My girlfriend's little one had a nose tube until just a few weeks ago and was traumatized the first time she had to reinsert. How far you all have come and how strong you all are!
    #postsfromtheheart

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  2. Thank you Kristin! I hope your girlfriend's little one is doing well! xxx

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  3. Thank you so much for this post. We have spent most of this year with the threat of a tube hanging over us, feeding our little man hourly when he was sleeping because we knew the pain would make him refuse to feed when awake. Then earlier this month, he got so sick he ended up with a tube for a week to keep him hydrated. It was a different experience than the fear inside my head. And although it's perhaps wrong to say it, it brought me relief. For the first time since he was born there wasn't a fear of him not getting nutrition. We have an appointment with a specialist gastro this week, and I have come to the conclusion that like you - fed is best. However, fed happens, it happens. Thank you so much for sharing your experiences with us at #PostsFromTheHeart

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    1. Thanks so much! I'm glad this post brought you a little comfort at what I know is an extremely testing time. I hope you get on ok with the appointment with the specialist gastro- I've got to say the guy who dealt with us (Alder Hey) was amazing. I hope you get some answers and a path forward! Sometimes you just have to take a deep breath and embrace a 'new normal' hey. Lots of love xx

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  4. Thank you so much for sharing this, Unfortunately Ben was in NICU for the first week of his life and for the first five days was fed via tube. He kept ripping it off though the poor mite! The way I see it as long as they eat it doesnt matter! #PostsFromTheHeart

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  5. I was a tube feeding Mama for a while and o too hated the though of it but it saved my baby when they couldnt take milk anyother way. All hail the tube #PostsFromTheHeart

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  6. Bless her, must've been a scary time for you all but tube feeding def gave her what she needed!

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    1. It sure did, thanks for reading Lucy x

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  7. Must have been a worrying time, but it is amazing what they can do to support our little ones these days x #MarvMondays

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  8. I too had a tube fed baby and am totally with you with the looks of repulsion to pity when out in public! I think it's time we broke those barriers down, after all it's just feeding and it keeps babies alive. Thanks for linking for #marvmondays x

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  9. What a fantastic post to be able to share. In the three, almost four years I have been a mum I have never come across another tube feeding post which thinking about it now is quite astounding. I love how you've opened up a little bit of a new world for all the mums like me that knew nothing about it, and how you've given us some of the tools to have a conversation with other tube feeding mums should we come across any. Thanks for sharing this, great post. Emily #MarvmMondays

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    1. Thanks so much Emily! That's what I was hoping to do with this post so your comments mean a lot to me xxx

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