Our NoTube stay is coming to an end. We don’t want to go home! It’s so nice being here with the team looking after us, and being together with the other families.
Until Sunday most families were still a bit stressed and tense, but on Monday the weights of all children were stable and it was easier for parents to let go. Most kids were not dependent on the tube any more, and I have seen mothers cry out of happiness. Some have never seen their child without tube.
Elodie’s weight is still stable, so she is able to sustain herself. Now she needs to work on gaining more eating experience and eventually gaining weight. We will get 3 months of aftercare, and we can always send them messages if we have questions. The tube fed children will get at least a month of aftercare after the last tube feed. Also, our child care team can contact Notube if they have any questions.
One of the brothers of a baby who is here gained more than 2 kilos! He doesn’t have any eating issues, but still it’s quite a lot. All the siblings who didn’t need therapy gained weight here! It was also nice to see that doctor Scheer also looked after the siblings, if one wasn’t feeling well he always conducted a medical check up. When one of the babies was having a cough, he arranged a hospital appointment because he didn’t want to take any risks. Luckily the baby was alright.
All kids have made a certain amount of progress here at NoTube. Either drinking more from the bottle, eating themselves, putting food in the mouth and trying new textures. The atmosphere is much more relaxed when compared to the beginning of the week.
Elodie was standing in front of the fridge pointing out which foods she wanted to eat. And on our walk home she kept eating the risotto they had made, even asking for it. We could only dream of this before we came to NoTube.
It will be exciting to see how our kids will do at home. Here the kids are allowed to make a mess, whereas at home you don’t want to have the food all over the kitchen. Maybe I will need to put a big sheet on the living room floor sometimes to create a picnic atmosphere. As they said here, your child won’t remember the spot clean house, but the warm and nice moments shared together, we are good enough parents. That’s a big lesson.
I feel more relaxed about Elodie getting dirty while eating. It’s an important sensory experience for her. Also, throwing lots of food away is part of her eating journey. This was difficult for me to accept, I don’t like to waste food.
Most parents don’t want to go home. It’s nice to be with the whole family, be carefree (sort of) and in an environment which feels like a big family, but also feels safe with professionals around.