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After long stays in hospital and a medical history full of complications, you are suddenly confronted with the tube dependency of your own child. Imagine that you don’t have nearly no more strength left; energy resources are drained and yet, you still have to get through the tough process of tube-weaning!
As with all previously encountered hurdles you find unknown strength. People around us ask, how on earth do we do it, how do we manage to hold on and master all these challenges. But as parents we don’t ask such questions; you just do it, you get on with it.
It is the same with weaning: you go on, you are all in. It is also true that the prospect of a life without being bound to the tube, which weaning offers, is a strong motivator. I remember the first day of weaning: We were exhausted after many long months, we had to monitor weight charts the whole time, work out when and how often our child would be sick and get up every night to switch off the stupid beeping pump. The long journey we had just made, made us even more tired. But we were determined to take on the challenge. I remember that we were quickly thrown in at the deep end. The NoTube Team didn’t need long to assess each new family. Everyone involved knew very quickly what needed to be corrected and improved and what advice needed to be given. For example, we were asked not to help Martin (Camille’s big brother) put on his shoes. He’s a big boy, he can do it himself! It was suggested that we leave Camille’s buggy at home as much as possible. She’s a big girl, she can walk! At the beginning, it was very confusing as we got the impression that they weren’t looking at the right things. We didn’t come here for this…. You question yourself as a parent. And later you understand that all this subtle, refined advice is going in the same direction: encouraging the autonomy of the child, learning to let go. It is precisely these steps, which ended up helping us to free ourselves from tube-dependency, because it doesn’t just affect the child, it affects the parents just as much A new perspective emerges. You learn to trust your child, to respect her needs and wants, to allow the child her space and autonomy within the family. All of those are things, which sound completely natural but which had been affected by the stays in hospital and the corresponding uncertainty. Before we arrived, we couldn’t imagine the scale of the therapy. The wean is not only a medical intervention the psychological aspect is important as well.
No two days were the same: Sometimes Camille was very irritable, tired and vehemently refused to put anything in
her mouth; sometimes we discovered a whole new little girl, who laughed more and talked and showed us the greatest attempts at eating. Of course, everything is relative, but at the beginning you are delighted when she dips her finger in cream cheese and puts it in her mouth or when she drinks water in large gulps and underscores her satisfaction with an “Ah” sound in between or when she carries a bread roll around with her everywhere all day and carefully nibbles at it. During these moments you believe wholeheartedly in success, you think you have won, that you are on the right path and that nothing can stop you. And when, the next day happens to be a day “without”, you realize how unstable everything still is and that nothing protects you from going backwards. The daily weigh-in is also a source of stress. Will she have put on weight or has she lost a precious hundred grams? The exchange with other parents participating in the program is very enriching. What a relief it is to know that you are not alone in this situation! At the same time it is tempting to compare the progress of our children and thereby cause new worries. But luckily the whole team is on the look-out and knows how to find the right words to calm and encourage us. Then the first “on your own day” without therapy and tube arrives. We try to treat it as if it was a normal day on holiday with the family. Happiness and fear are closely tied together. Will we find a rhythm to suit us all without our daily organizing of tube feeding at fixed times? In fact, it is very pleasant to simply live without constantly looking at the clock. We had time to go for a walk in the park, to go swimming or to a museum. All that in one weekend? We had forgotten how things are when the feeding tube doesn’t rule your life. It is a taste of what awaits us when we return home.
The return home really is tinged with happiness and fear. Will we manage to implement all the advice we got in Austria into our everyday life at home? How will Camille’s integration into day-care go? Will she accept food in this new environment? In the first weeks certain adjustments are necessary. There are good and bad days. But Camille continues to make progress in her own rhythm. She only wanted to eat from a syringe and suddenly she starts to gobble up yoghurt with a spoon. She explores new tastes and new consistencies. And her little friends in day care serve as perfect role-models to encourage her.
It is only a few months later, when you look back that you realize how far you have come since your everyday life shows no more signs of what once was. Camille eats the same as the rest of the family, she is steadily gaining weight, is developing well, is exploring the world around her like every other girl her age. So yes, this tube wean did feel like an emotional rollercoaster, but today it is clear that it was worth it.