Bailey died today at 9:50pm.

The decision Michelle and I had taken not to do anything to bring about the end of our son's life was overturned yesterday morning when we arrived at the hospital and saw the deterioration in his condition. The main reason was that the drain that was in Bailey's tummy was taking away infected fluid, but that fluid was also rich in protein which was badly needed by his tiny body. This was causing an ever increasing deficiency of protein in his body and was causing his skin to start breaking down. With the skin and the tissue under it breaking down the medical staff told us that it was not going to be possible to replace any of the drip sites if the existing ones failed and this would make it impossible for Bailey's pain management to continue and nor would they be able to get infusions into him, such as dextrose or replacement protein and his condition would rapidly detriorate if this situation was reached. Bailey's pain was being managed by automatically pumped morphine through a syringe. It was imperative that this morphine could be got into Bailey otherwise he would be subjected to massive levels of pain. This agonising pain would only increase as his condition got worse. Bailey was also sliding into multi organ failure and already his liver and kidneys were showing the tell tale signs that they had failed. Michelle and I repeatedly asked if there was any possibility that Bailey might turn a corner and recover, but we were told that he was now into an irreversible cycle which only had one outcome. The decision left open to us was either to carry on with aggressive intensive care or to allow the move into palliative care where at least his last hours could be controlled and made tolerable for him. We no longer had the power of life or death over our son, all we had was the power of making him endure merciless pain or making his last hours relatively pain free. Any loving parent would baulk at the prospect of making their baby suffer unneccessarily, and we were no exception to this rule. We could not continue with the aggressive treatment as we knew this would lead to intense and constant pain for our boy and we could not allow this to happen. The multi organ failure was an unstoppable progression, and if we refused to allow the staff to move Bailey into palliative care, there was almost a certainty that at some stage during the day Bailey's nurse would find him dead in his incubator.

With the decision made, Bailey was moved to a private room, where he was made comfortable and dressed prior to receiving visits from his family and friends. During the course of the day we watched Bailey deteriorate and gained the knowledge that our decision was being confirmed as being the right one for our son. All day long he looked at the people gathered at his bedside and he stayed alert until the very end.

Bailey had fought a long, hard battle and had overcome all of the problems that had come his way so far, but the NEC had got the better of him. Michelle and I could see how quickly he was now going downhill and we asked to be alone with our son for this, the final stage of his journey. Bailey's nurse and the consultant came into the room and prepared him for the disconnection of his breathing tube. The tape was removed and for the first time we could see the whole of his face. He looked perfectly peaceful, although four and a half weeks of having surgical tape on his face had taken it's toll on his delicate skin and had left some angry bruises. The Consultant and the nurse asked us many times if we were still sure we wanted to carry on with the disconnection of Bailey's ventilator, or did we want to return him to the main ward and more treatment. Knowing what we knew would happen to him, sooner rather than later there was no choice to be made, we had to let him go while his pain was still able to be managed. The breathing tube was removed and Bailey was handed over to us. I cannot now remember which of us took him first, but in the time we were alone with Bailey, Michelle and I both held him and nursed him. At times we held him together in our intertwined arms, and it was while we both held him that he died. It was very peaceful and relatively swift. Bailey had lost much of his colour very soon after the tube was disconnected, which indicated how badly his lungs were functioning and how little oxygen his lungs were getting into his blood. There was no drama in Bailey's death, no gasping or fighting it off. His last breath was released as his loving parents shared the job of holding him.

Soon the nurse rejoined us and we told her that Bailey had gone. She went out to bring the ward sister. Sister listened to Bailey's chest for a minute or more before looking up and telling us that he had passed away. She then went to have the doctor confirm Bailey's death.

Bailey had died and felt the last of his pain, it was 9:50pm.

The decision we had taken to be alone during this time was perfect and the right one for us. We simply could not have coped if we had had to have been in company, no matter how close those people might be. Michelle and I felt we had to keep ourselves strong in front of the visitors so that they could devote their time to Bailey rather than worrying about us, so when they had gone and Bailey had died, we let our feelings show.

We held each other until we were composed enough to speak to the staff. When we did they offered us option of bathing Bailey's body, dressing him and taking him home with us so we could put him in our bed overnight. We refused this and the staff then said there was a room at unit we could use for the same purpose. Again we turned it down.

Bailey's nurse then said that she would take him and wash and dress him and then take him down to the hospital quiet room where he would stay overnight. After this was completed she would take some photo's of him and cut some hair for us to keep. She would also take prints of his hands and feet. All this was presented to us later in a folder with his personal details in it. Bailey's nurse went far beyond what could have been expected of her that day. Her shift should have finished at 9pm, but with all the extra work she took on for us, we estimate that she would still have been working well after midnight. Her dedication to our son went a long way to making an extremely painful day for us a little more tolerable. She did the things Michelle and I were unable to and left us to begin the very first stages of our grieving process in peace.

When there was nothing more for Michelle and I to do in the hospital we decided we should go home. The hospital had, in that day become the worst place in the world, and yet at the same time we had to overcome our instincts to stay and make a move. We had to go against all our feelings to leave our son in the hospital while we went home.

This was the end of the longest and hardest day either of us had ever had. Twenty four hours earlier we had purpose, but now there was only desolation.

Our son was dead, and the knowledge that our actions had saved him from spending his last hours in agony were of no consolation to us. We could not have lived with ourselves had we fought to make the doctors carry on with his treatment while our son suffered excrutiating pain, but neither could we see how we could live with ourselves having followed this path.

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.

Yesterday Michelle and I were given news that had the potential to be heartbreaking. The consultant in charge of the ICU told us that for the moment, they had done all they could to treat the NEC infection that Bailey has. The antibiotics course that he was on were nearly at an end, and although the bugs that cause the disease are all but dead, the inflammatinn remains, and will probably take a few weeks to subside. The rest, in the words of the consultant was up to " Bailey and the man upstairs". He went on to say that Bailey has a strong will to survive, and we suspect that he means that many babies in Bailey's condition would not have made it this far.

Bailey has a strong will to survive and he will do all he can to beat this disease. The medical staff will support him with pain relief and other drugs to give him the best possible chance.

In general terms Bailey has not improved greatly, nor has he deteriorated. He is gradually getting rid of excess fluid, which will lessen the weight of his body and make it easier for his lungs to breathe in a less heavy chest. His belly is a little less swollen and the colour is less angry than it has been which shows that the infection and inflammation is slowly going. His breathing requires much less mechanical support than it has, even with chronic lung disease. These are small steps forward and will. little by little, put him in a better position to beat the main problem that he has. The fitter he is in other areas, the more he can concentrate on the NEC.