So it was recently Tube Feeding Awareness Week and in the malaise of awareness weeks that the double-edged sword of social media has brought to us, this is one I could 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 mums, 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 or dad out and about using a tube, ask them about it, don't just snap your head away as though open heart surgery is being performed on the sofa in front of you at Starbucks . The science behind it is quite fascinating and who knows you might just make them feel a little less invisible. 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 :-)
