The NEC infection Bailey has continued to cause serious worries for the medical staff treating Bailey. Nothing they had done had shown any signs of improvement, and late on Monday night a decision was reached to try to insert a drain into the side of Bailey's tummy. If this procedure went well the drain would syphon off the septic fluid which was filling his abdomen.

A consultant paediatric surgeon came to assess Bailey and though that the drain was the best course of action and after seeking, and getting, our consent, he began the procedure. Bailey has had a problem maintaining the platelet count in his blood and this has caused problems for his clotting capabilities. After the needle for the local anaesthetic was inserted, Bailey began to bleed at a level which was too high for the surgeon to risk continuing with the procedure, and so he stopped. Our son was given whole blood and platelets overnight with a view to attempting the drain insertion the following morning.

When Michelle and I arrived at the unit on Tuesday morning we were told that the neonatology consultant wanted to speak to us and we were ushered into his office. The consultant said that Bailey's condition was worsening and had deteriorated, in his opinion, past the point where there was any hope of a reversal and recovery. The broke the news to us that, in his opinion, and of the other doctors in the unit, it would be better, and kinder for Bailey to switch him from aggressive intensive care to palliative care. In other words the consultant was asking us to allow them to make Bailey as comfortable as possible for the time he had left. He said a peaceful death was the best they could do for him and that further treatment was almost guaranteed to be futile.

For Michelle and I the world had crumbled to nothing. I have always thought that where there is breath there is life and where there is life there is hope, and so we continue to hope for Bailey. We will not make a decision to end his life, that is not our place. Bailey has proved over the month he has been with us that he is a fighter and can cope with many things that an adult would succumb to.

Without wishing to belittle the medical staff or appear arrogant, we do not have the evidence needed to swing the argument away from fighting for Bailey. Yes, the medical opinion is based on years of experience and hard learned knowledge, but in the final analysis of it, it is purely speculation. It is an argument based on test and figures which have changed for better and for worse over the past few days and nothing in those test results convinces us that Bailey has gone past the point of no return. We appreciate that Bailey's gut is damaged and will need surgery to rectify the problem, surgery that he is too frail to undergo, but there is nothing to suggest that if he is treated properly to prepare him for an opweration he won't be strong enough for it in the near future.

We asked the neonatology consultant for a few days to to continue with the intensive care, and we also asked him to go ahead with the drain. Bailey's blood had improved enough to make the procedure safer than the previous evening. The consultant agreed and went ahead with the drain that afternoon. The drain had an immediate effect, and much fluid was drained from Bailey's tummy. The decreased pressure helped his breathing and he soon began to show small signs of improvement. He has a long way to go, but he did make a start. We pray he improves further today. A long journey must always start with a single step.