24 March

Max is now being tried on 3-hourly feeds. We're also trying to encourage him to suck feed. While we've been trying to breastfeed, which he seems to like, there's not much in the way of actual swallowing going on. I think he sees it as a comfort thing, rather like his dummy, instead of a feeding time. Today we tried a bottle with a few ml of feed in it, which he sucked at ravenously - for one or two sucks. However, the moment the liquid hit the back of his throat he arched his back and grimaced, and it all was spat out. He didn't actually choke - the feed didn't get that far. I persisted for about 15 minutes, tried just dropping a few drops in, tried back on the breast, tried the dummy, then back onto the bottle. Same thing again.

Jenny (nurse) tried him on the bottle again in the afternoon, and she had the same reaction. In fact, his O2 requirements went way up (to 60%) as a result, and he seemed exhausted. This had just happened when I arrived, so we finished the feed (gavaged) and I picked him up. Within 5-10 minutes he was back at 28% O2, so the panic was over.

My fear is that this will prove to be a big problem. He needs to get the concept of sucking and swallowing food. Up 'till now all the sucking has been for fun and comfort (dummy, and breast to a certain degree), but the rush of liquid he gets when he sucks a bottle seems to really frighten him. We may have to get the speech pathologists in to see how we can retrain him to suck and swallow.

Maybe I'll have to give up the whole breastfeeding idea. I'm really not getting a great deal of milk, and the only long-term way to increase the amount is for Max to suck feed. I always knew that breastfeeding may not be a real possibility for us, but it would be good to be able to get it going. However, maybe it would be better to encourage him with one feeding method (orally) only - and maybe that's the bottle. Ah well. We'll have to see how he goes this week, and I'll try and get some really good advice - there are a couple of staff who deal with reluctant feeders all the time, so I'll try and sit with them and work out what the real options are. I truly hope he gets it - it's quite scary to think something as basic as feeding could be a big problem for him.