When Elis was first born, everyone we spoke to told us that we were in for a rocky ride or an emotional rollercoaster and that it would seem like we'd take one step forward and two steps back. They weren't kidding.
Over the first week or so, Elis managed to knock off most of his drugs and even eventually maintain his blood pressure. His single biggest problem has been his immature lungs. The doctors pushed him quite hard during the first few days to try to get him off the tube which was ventilating him, but he just couldn't cope, but then again, he was born at just about 26 weeks gestation so his lungs weren't supposed to work for a further 14 weeks! After several weeks of being repeatedly reintubated as his tube got blocked, the situation was getting more and more serious. Chest X-rays were showing his lungs to be suffering not only from being so premature, but increasing pressure damage caused by the ventilator.
After one occasion when it took the doctors half and hour to rescusitate him after his tube got blocked again, the consultant suggested that unless they could get Elis to cope without the tube, next time we could lose him. The blocked tube that they removed was sent to be cultured and the report sent back was that his lungs were infected with e.coli, which is resistant to the anti-biotics that he was being given as a precaution. The anti-biotics were changed and fortunately the infection never got into his blood stream. To help get Elis off the ventilator and thus reduce the risk of further infection, the consultant suggested trying a course of steroids, which although may have detrimental side effects in the long term, may be our only hope of giving him a long term. The steroids, if Elis responded to them, would reduce the inflamation in his lungs and buy him some time to rest, grow and begin to mend the damage to his lungs. We agreed to the steroids and fortunately, they appear to have helped without giving him many of the short-term side effects.
He was extubated two days after starting the course of steroids and so far has managed on tubes attached to his nose (rather than down his throat) for over a week and his body should now have been clear of steroids for a few days. He even had a day on 'low-flow' which is just the thin tubes providing a constant flow of oxygen to his nose. He's since gone back onto CPAP via the nasal assembly, but seems pretty stable on it most of the time. He still has his moments - his oxygen saturation dropped so far he had to be 'bagged' (manually ventilated) four times on Thursday night, but has been ok since. We've still got a long way to go until he's out of the woods, but in general, each week we're in a better place than we were the previous week.
He's having fairly regular blood transfusions as the doctors are taking blood samples more quickly than Elis can replace the blood, but he was able to tolerate breast milk when he was just a few days old, so is having the best nutrition available whenever possible. He is now stable enough to be weighed, and on Friday topped the 2lb mark when he weighed in at 940g!
He was also well enough on Thursday to finally come out of his incubator for a cuddle with his mummy!! Maybe tomorrow we can have another go...
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