With not much progress of late and a few too many little signs of things slipping ever so slightly backwards, we decided it was time to have a proper catch up with one of the consultants, rather than just the usual cursory chit chats about the lack of anything significant to report.  More fool us! So the request went out and the consultant running the show this week dutifully appeared at Savannah’s incubator this evening where we were quite happy to have our catch up and hear that the lack of news of late was indeed good news.  No such luck tho.  No sooner had the doc turned up at Savannah’s side, we were promptly escorted to the naughty room for our chat.  Sh*t….that’s not what we wanted at all but seemingly she was adamant that the chat needed to be in the privacy of the naughty room.

So there we are, sat in the naughty room, surrounded by boxes of tissues, copies of the bible and leaflets about coping with grief. Great….we’re feeling super relaxed about the conversation now, as you can imagine!  Thankfully the fear etched on our face was crystal clear and the doc immediately launched into reassuring us that there was nothing terrible she needed to report just some things which were quite complicated to explain and needed a bit of piece and quiet  in order to best get the message across in a clear way.

Good news first, with the explanation of how pleased the docs are that Savannah has stayed off the ventilator following the course of steroids and more significantly, following her weaning off them and being a steroid free zone off the vent.

And then came the inevitable “but”.  And today’s big but  came in the form of telling us that SJ’s chronic lung disease is evolving and currently falls into a moderately severe level.  The plan is to try to do as little as possible to SJ for now and just let her grow as the more she grows, the stronger her lungs will become and the better, of less worse perhaps, her chronic lung disease will be.  All going well, that could look like 4 weeks of absolutely bugger-all happening with just ever-so small improvements in lowering her oxygen requirement over this time as her little lungs grow.  So what we’re really hoping for is an exceptionally dull month of no news other than teeny weeny slight improvements, which over time will add up to SJ being in a better place with her lungs at the other end of it.  That’s scenario A.  There is, however, a scenario B if plan A doesn’t materialise but, as ever, we’re spared having to hear and worry about things which may or may not happen and once again it’s a case of “we’re not there yet” so there’s no need to worry about these things.

So if all goes well, we’re hoping this blog is going to be hands down the most boring thing to read on the internet for the next month, with little to report other than a few grams of weight gain each day and a gradual reduction in SJ’s oxygen requirement over time.

Another positive to come out of today’s naughty room chat was that for the very first time, the doc started to mention some things that we may expect to see a bit further down the line, rather than just talking about the next day or few days as has generally been the case thus far.  Most encouragingly, whilst there’s no timetable for this as yet, doc told us that Savannah is now getting to the sort of weight where she could be considered for a promotion out of intensive care and into high dependency (the next room along the corridor in the NNU).  The timing of her eventual move will depend on how stable she remains and how much care she needs but the carrot has officially been dangled and whilst she’ll still have exactly the same monitors, doctors and nurses and be all of 5 meters from where she is now, this would still be a huge bit of progress to finally graduate out of ICU and we can’t wait for when the time comes.

The second longer term piece of news drip fed into us was that Savannah is looking more likely to need to go home on oxygen than not. We’d been told about this being a possibility previously but now we’re being told it’s more than likely to occur, although like everything here, is certainly not a definite either. Apparently, this is all very manageable and some nice people come to our house and kit out each room with a teeny oxygen tank and even a mini one to fit in her buggy for when she’s out and about and then they come back and swap them over for full tanks every so often.  The idea behind going home on oxygen is that there’s no longer any need, at that point, for her to stay in hospital and she’ll just need more time for her lungs to develop and the chronic lung disease to get better with the added help of a constant boost of oxygen.  Some babies can grow out of needing their oxygen after just a month or two at home whereas others may need it for most of their first year and occasionally for up to a couple of years. We’re hopeful if it happens it won’t be for anywhere near as long as that tho.  So if the worst case scenario is a fully fit SJ who just needs a bit of extra o2 at home for a few months or even a year, we’ll sign up for that right now and be on our merry way then…I’ll go grab the car seat. If only!  We still need to get through these next couple of months in hospital without any more set-backs and with the gradual steps of progress SJ needs to make in order to break free from her monitors, wires and tubing and get her release date.

So brace yourselves for what we are really hoping will be a spectacularly dull read over the next few weeks and months.  How about some cute picture of our little leading lady instead then…..