Whisper, whisper...

Hurrah... progress and then some more progress... and progess is also scheduled for tomorrow.
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)

In conversation and off the record, one of the nurses said she thought he would be trialled on to High Flow soon. I know the nurses really don't have any say in this kind of thing and it is just guess work but just that little whisper of the words "High Flow" was enough for me. He has taken so long to make any progress on the oxygen front, I was elated. I thought he would never get there... well, ok...not literally. The next day I was told that if he was having trouble latching on for a feed, the doctors were happy to try high flow. He wasn't having trouble so we were advised NOT to go to high flow but again.. just the words were enough.

The same day they started to grade him up from 22ml per hour to 44ml every two hours. His reflux caused him a lot of discomfort so with any luck, feeding him less often would help out there. So every hour they minused a millilitre from one feed and added it to the next. The process took almost 24 hours: 22ml, 24ml, 21ml, 25ml, 20ml, 26ml, 19ml.........3ml, 41ml, 2ml, 42ml, 1ml, 43ml, 0ml, 44ml.

4 days later and he is now on 3 hourly feeds of 67ml! Thankfully that was a bit less of a process, involving 3 feeds at 2.5 hours apart and that was that. Breastfeeds of course are not measured but we guess and watch his behaviour. If he is grumpy, they top him up but that has only been once.

There is a downside to all of this. My life has just become that much more logistically complex. With 1 hour feeding, I could arrive any time and be guaranteed it was almost feeding time and that if he didn't feed first go, I would be there for the next one. Also, he was only needing 20 ml, so as long as I didn't express just before I left home (30/40 minute drive) it was fine. Now I have to be there at one if not two of his feeding times: 7.30 or 10.30am, 1.30, 4.30, 7.30 or 10.30pm.. and if we don't feed... well.. tough. Also since he needs over 60ml, I can't have expressed for the 2.5 hours before I leave home.. so need to take that into account when planning my day AND stick to the time .. precisely. My friend, Toushka, jokingly wanted to make me a schedule to fit in work, Brooklyn, expressing and visits.... not to mention general house/ family/ life stuff ...like eating. I think I might need her to do it.

So he grew and he grew and today when he was weighed he tipped the scales at a fab 3.54 kg. He's got his Fisher Price Rainforest mobile on his cot now and sits up in a feeding cushion a few times a day. The physio also brought him this weird chair that looks like a car seat stripped of its fabric. He needs to get some control and strength his head/neck/torso like a regular baby would from being picked up/ put down all day and sitting in bouncers and swings etc.
Since I am trying to blog chronologically... I finish with the last piece of news we heard today:
Tomorrow:
High flow for up to 2 hours!!!!!!!!!!!!!!!!!!!!!! Woohooo. The time will then increase according to how he behaved the day before ... fingers crossed!!!