25 April

Well, feeds are going to be our big challenge, for sure.

Max was a sleepy boy this morning, and we had to rouse him to try and feed him at 9am. He was extremely sleepy, but took 40ml by bottle (eventually). He then proceeded to wake up and have a lovely morning, lots of big eye contact and I do believe a smile did occur at one point! He seemed hungry, increasingly so right up until 12.30 (feed due at 1pm), when he promptly fell asleep. Timing is everything.

Anyway, he did wake and took the bottle really well for a while, then got very tired again, and once more he got very sleepy. It's a bit of a pattern. He again took 40ml. This time he did a bit of a desat, but picked up pretty quickly. We have had the speech pathologists in twice, and they have given us some tips, but Max just gets so tired, or else he looses the 'seal' on the teat and so he swallows a lot of air, and so gets uncomfortable. then, it takes ages for him to burp. Aw well, we just hope he can get better and better as the days pass.

Yesterday he was weighed and he had lost 100g (back to 3480g), so hopefully with incresed feed (which he's tolerating), he'll start increasing weight again. It's been a bit of a plateau time over the past 2 weeks, and he does need to get a good steady weight gain going again. We'll weigh again tomorrow.

During rounds, Dr Peter seemed pretty relaxed with Max overall, and was discussing stopping a lot of Max's medications over the next week or so. He also had a look at Max's surgery site, and while there is still some swelling and bruising, he is really happy with how it all looks. he also (along with Dr Simon, and Mr Kirby) can't feel a hernia on the left side, and so isn't keen to put Max through surgery for something which isn't a problem. If a hernia does appear later on, well then we'll deal with it then. It seems more and more likely that Max will have no more surgeries before he goes home!!! Can't quite believe that.

A grandmother (whose grandson is in the unit and we know quite well) asked me how many surgeries Max has had, and I had to actually count them (it's five) - I couldn't recall a figure off the top of my head. Poor bugger.