Food – a battle.

We don’t give Abbe breast-milk anymore. My wife stayed at it for a very long time, but there has to be some sort of a limit. We’ve left the pump back and our basement is full of jars labeled Profylac. It’s a milk free substitute. Or, rather, it’s based on cows milk but the proteins in it have been tamperred with so that sensitive little tummies can deal with them. The consequence being that it tastes nothing like milk. It’s rather disgusting, as it were, undrinkable in my oppinion. Bitter as methylated. But milk free.

No wonder Abbe wont eat. On the other hand, he was just as reluctant when the yummy mother’s milk was on offer. They say feeding problems are common among heart children in general and 22q11 children in particular. So he’s kind of top scoring there, I suppose.

Sometimes he’ll slurp down his 130 ml of Profylac in less than a half an hour. Sometimes.On a perfect day. The right temperature, no colds, no blisters anywhere and preferably just the two of us, at home in our living room. Most of the times it’ll take an hour or more to get him to eat the smallest required amount. And a lot of the times he’ll end up screeching with panic, refusing to eat altogether.

Had he been an avarage baby, we probably would have left it at that. Thinking – Ah well, he’ll eat when he’s hungry. But it’s different with heart babies. He needs to eat every third hour to keep up with his weight and length curves. And he needs to eat a certain amount daily or the curves will (dala) even more.

It’s an ongoing struggle. Tough, tiresome and a constant source of stress and worries. Some days we’ll find ourselves (en hårsmån) away from giving it all up. What keeps us going then is knowing what the option is. Enteral nutrition. He’s not having food through a tube up his nose. Not if we can help it.