Day +63: Sean's Food Struggle

I am so over feeding Sean.

For 2 days now, it has been a massive struggle to get Sean to swallow his food. There was no issue getting the food into his mouth. The problem laid with what happened with the food once it was in Sean's mouth. I'd resorted to timing the length of time between the food going into Sean's mouth, to when he swallowed the food. 4 minutes. Sean would hold his food in his mouth for 4 long minutes before swallowing.

In the meantime, while the food was in Sean's mouth, it was turning mushier and mushier, mixing with his saliva, and it would all start to leak out of Sean's mouth. It was a massive understatement to call this dripping food disgusting.

Most meals, it would take an hour to feed Sean. I would be happy to spend an hour to feed Sean, if only he would eat a good amount of food. But an hour after we would start meal times, and he would have eaten half as much food as he normally did.

I was growing very tired of this behaviour. We were feeding Sean food that he had previously eaten without any problems, so it wasn't a new food or flavour that he didn't know or want to get to know. We were feeding him at around the same time every day, so it wasn't a brand new routine he was trying to settle into. We have no idea what was causing this new reluctance to swallow food, but we were becoming mighty sick of it.

I had tried some new foods with Sean - he was recently introduced to boiled carrots, which he seemed to like. I'd also given him things to pick up and eat by himself, so he was, for all intents and purposes, feeding himself. But Sean would tire of feeding himself after 3 or 4 bites and started to throw the food on the floor or fling it across the room. I'd also given him a spoon to dip into the bowl of food, scoop a small amount out, and put the spoon in his mouth. This would also work for 2 or 3 small spoonfuls, and then he would try and flick the food out of the bowl.

I'd also tried eating with him, in hope that if he saw me eating when he was having his meals, he would swallow the food and finish his meal quickly. But no, that too had lost its novelty. It was fine to just watch Mummy eat. Sean would continue to hold the food in his mouth and let his saliva turn it into a liquidy sloppy gunky mess. I was out of ideas, and almost out of patience.

This growing problem was something I was going to have to address with the doctors again. If it wasn't for the fact that we must try and maintain Sean's weight, I wouldn't care - he could starve for all I cared - eventually, if Sean was hungry enough, I was sure he would eat. But we had to maintain his weight, which meant we had to force the food into him, and if he was going to play up like this, then it made the job a lot harder, and a lot less enjoyable for everyone involved.

Thankfully, Sean seemed to be the only one who didn't like my food at the moment. I had made up a huge batch of food for Lissy and Dave, and this afternoon, I packed a number of boxes together and took them over to their place. They weren't home when we arrived, so we left the food on their front porch and sent a message to let them know the food was there. We missed them by 10 minutes or so, as they arrived home shortly after we left.

After we came home from our little trip, we received word from my mother that she was't going to be able to look after Sean on Friday after all. Mum had been quite insistent that we didn't take Sean to Lucas's funeral on Friday, and the only solution was for her to look after Sean while we went. It turned out Dad was uncomfortable with the idea of looking after Sean, as he didn't want to be responsible for anything bad happening to Sean while he was in their care. Dad was and continues to be fearful of Sean's NG tube, and with Sean being such an active boy, Dad was scared that the tube could accidentally come out on his watch. I wanted to argue with them, saying that if the tube came out, we would simply take him back to the hospital to have it reinserted, and Sean could happily go for a few hours without the tube in his body, but I didn't see the point in arguing. Sean was going to have to come to the funeral with us now, and Mum was not allowed to argue with us about that.

We really need Sean to stop struggling with the food and start eating better again. I don't know how much longer I can stomach this fight against swallowing baby mush. It takes all the joy out of feeding time, for everyone, and meal times are suppose to be fun and awesome, because we get to eat yummy food. I don't want to dread meal times with Sean, but that knot in my belly grows every time I prepare food for Sean, wondering if he would eat it, and how much of it he would actually swallow. Come on, little man, it's only mushy food - not poison - just eat it!!!