We’ve heard an awful lot of talk about Chronic Lung Disease, or CDL or BDP for any Latin speakers out there, of late and the docs keep telling us it’s not as bad as it sounds.  Hmmm, pretty tough call to believe that something with a name like that isn’t serious.

Anyway, SJ has it. We know this. It’s not the worst case they’ve dealt with but it’s not the mildest either.  When pushed to put a tangible number on it, Dr A scored SJ a 3 or 4 out of 10, with 1 being the most severe and 10 the mildest. So not chronic chronic but quite chronic enough it seems.

Thursday pm’s change to the wobble wobble ventilator mode seemed to show some early signs of improvement and first thing on friday morning all was sounding ok (relatively speaking for someone in icu who’s scored a 3/4 for CLD) when I phoned.  Things didn’t stay that way for long tho and by mid morning SJ was misbehaving and requiring the attention of 5 medical staff simultaneously to get her desats under control. And with that the docs called time on the suck-it-and-see approach and decided it was time for the steroids.   By now we’d had a very small amount of time to read up on the very limited data and research on the pros and cons of steroids for new babies and, like most things here, they carry some greater risks but on balance the pros outweigh the cons. Leaving little Savannah to find her own cure for CLD just wasn’t working so steroids are her best bet right now. The docs are all in agreement that this has to happen so, thankfully, have taken the opportunity for us to make a very difficult decision away from us and are just pressing on with what needs to be done as doing nothing is no longer an
option.

So Friday wasn’t any more fun than any of the last 7 days, apart from having our first meal out in a month as Abbie and Charles came up to distract us for the evening (as well as bringing yet another ginormous food parcel!). By this morning (Saturday), things are beginning to look a bit better, with Savannah having had a good night and the pressure on her wibbly wobbly ventilator having come down a bit.  Seems the steroids are beginning to work already and the docs are keeping a very close eye on things to pounce when the opportunity strikes to get her off the ventilator once and for all.  The plan is basically to let the steroids kick in and “aggressively” reduce her reliance on the ventilator (we presume this means to reduce it quite rapidly rather than having a Sargent Majoresque doctor shouting aggressively at a nurse to turn down the ventilator, but who knows!?). When the window opens up to quickly wean her off the vent, the docs are poised to take it and are hopeful that’ll be her off once and for all. There’s the liklihood that she’ll go back a bit once they then start weaning her off the steroids but not by so much that she needs the ventilator again.  So that’s the plan and once again absolutely everything is crossed.

As well as all of the unknowns about infections and virusus which SJ may or may not have,  her progress is also dependent on her mood, which is generally good but like all of us, occasionally not so good. Being over proded and poked with needles and other medical instruments in various pre-existing  and sometimes new holes, understandably tries her patience and today is one of those days. Dr Chris has diagnosed SJ with GBS this morning…which is fortunately not anywhere near as serious as CLD and is simply a case of Grumpy Baby Syndrome!

In other good news,  Savannah’s neighbour, Jack, has gone. Not home but after a successful course of steroids, he finally got off his ventilator onto cpap and stayed there and was well enough to be transported back to a hospital in Milton Keynes where his parents live. Really pleased for Jack and his parents but desperately jealous at the same time that we’re not there yet. The empty space in Icu, where Jack was, is a really strange sight and already being prepared for a new arrival,  as some other expectant parents’ lives are about to be unexpectedly turned upside down. 

Back to the heroine of this tale tho and here’s a little pic of her this morning,  chilling in her new incubator (she gets a new one every week) and working away at getting better.