21-22 March

FOUR MONTHS!
Yes, today Max is four months old - or just over one week, depending on how you look at it! He's really come on in the last week, and now is over 3kg in weight (3060g today and 45cm long). Yesterday he was moved to 3 litres of O2 in his intranasal flow, and so far he's travelling about the same in his saturations. He doesn't desat as much anymore, but occasionally dips to the low 80s. Mostly, low numbers on the monitor seem to be related to a bad 'trace' - the sensor on his foot not picking up his blood flow very well. Usually this is when he twitches or wriggles.

Today we had a very successful bath - even got a bit of a smile at one point. I put all the monitors/sensor back on him by myself, and even got them right! He's been having a go at breast feeding, but yesterday and today he has one good suck, then promptly falls asleep - literally, he just goes all 'sleep floppy'. Extremely cute, but he is going to have to learn to work a bit harder to get food. Our latest advice is for the staff to try a bottle (or at least a teat) when he is doing the 'hungry' thing - especially when I'm not there. Even when I am, we will try letting him demand food, and then give him a few ml through a suck feed. We were told horror stories of children who become dependent on the nasal-gastric tube and hate having anything in their mouths (food-wise), so they become very hard to feed. I thnk he'll be fine, but it will mean we spend more hours at the hospital every day to be around for more feeds.

The unit is extremely busy at the moment, all Level 3 beds are full, and apparently the other Children's Hosiptal in town is also full. They (collectively) are 'on divert' and are sending any new intensive care cases by air to Melbourne. Max is, apparently, possibly going to be moved to Level 2 as he isn't as high-needs as some of the others! There are 2-3 other children who'd be moved first, but this is huge. We don't know if it actually will happen, or if it does if it would be temporary, but if it does, I'll be living at the unit for a while! The Level 2 staff are great, but they (in general) are a different set of people, and the routines are very different to the intensive care of Level 3. We know that it is extremely hard for the parents when this change is made, as the ratio of staff is much lower. Obviously, this is because the children don't need one-on-one or one-on-two care (as in Level 3), but it will be a bit of a 'culture shock' for us when it happens.

Little things - the nappy rash/excoriation is still bad and elicits gasps and intakes of breath from staff when they see it. So, we're trying another medication to try and get it healing. It did bleed a little today, even with me gently patting him dry. Despite our best attempts, he has developed a common problem with long-term care infants and has one side of his head a bit indented. this is because the cots are all set up for the carer to work from the right-hand side. So, it is generally easier for the nurse to put the baby with their head facing to the right. We have tried to encourage Max to put his head to the middle or to the left, but now he finds it a bit odd. So, we routinely move him onto his left side whenever we put him to bed after a cuddle, in an attempt to lessen the pressure on the right side. Hopefully this will 'even out' after a while.