Tubes

Well, it's been another rocky week for little Adam.  Since my last post he calmed down a bit, stopped being so grumpy, and reached 34 weeks, though without doing much in the way of growing.  We had a lovely cuddle on Saturday when I sang him lots of snatches of songs, the lucky boy (note to self: learn more than the first line of some songs!).  He was also placed on the waiting list for an Optiflow machine, which would have made him very happy, as it involves a nice little nasal tube, rather than a big prongy mask thing that squishes his face.  Unfortunately, on Sunday his oxygen requirements escalated and he wasn't coping with breathing on the CPAP machine (continuous positive airway pressure) that gave him support for his own breathing.  He was placed back on the ventilator, with a big tube down his throat, directly inflating his lungs, but as there was no sign of infection, the doctors thought it was just that his lungs had got tired, which often happens.  They thought he'd only need to be ventilated for a day or two, until his lungs had had a rest - then he'd be able to breathe on his own, albeit with the help of CPAP.  This didn't happen, however, and over the course of the week his oxygen requirements increased, as did the air pressures required to keep his lungs inflated.  At the same time he was having progressively more desaturations, where the oxygen level in his blood dropped (important for delivering oxygen to the tissues and dependent on decent lung function).  Basically, he wasn't winning.  After three days, he was prescribed another course of steroids.  Yesterday, after they should have started to work, he was still poorly and his heart rate had also started slowing occasionally. It really felt like we were going backwards and I couldn't see how it was going to change. I was very down - it had been two weeks since he was really doing well and they were talking of moving him to our local hospital.  Not seeing any progress brought all the short and long term worries to the fore:  what the lack of good growth, a couple of potentially worrying features on his head scan last week and his prematurity will do to his long term development, and, given his lung problems, the fact that at 7 weeks in, we are almost certainly less than half way through his hospital stay.  It all just felt overwhelmingly much, though thankfully at various points in the day I had friends, family and Chris all to pull me up and put me back together!  After all that misery, and not sleeping well, I wasn't sure how I'd cope with the hospital today, but the little man really helped me out.  He'd pulled out his ventilation tube early this morning and had been put back on CPAP, and was doing fine.  Today he was a bit grumpy, pulled out his feeding tube a lot, dislodged his CPAP a few times, but only had the odd desaturation - and he's reached 1.3 kg, twice his birth weight, albeit with a fair bit of fluid retention.  I don't know how he did it!  I guess the steroids kicked in a bit late?  Anyway, this one day of progress makes it easier to see into a distant future where Adam is home and healthy.  Hurrah!  He's also super-cute and hopefully we'll get to hold him properly tomorrow, if he's still doing ok.  After the last few days, I'm not taking anything for granted, so fingers remain firmly crossed.