28/01/2006
Bailey settled really well after his escapade on wednesday night and he is now back to the position he was in before it happened. This means that he is still seriously ill but he is no worse than before. If anything he is slightly better. Since then he has gradually increased his water output and this will hopefully mean that his puffiness will decrease in the coming days, to show just how much inflamation and swelling remains around his belly. X-rays and visits from the surgeons have dictated that his treatment stays with him being on antibiotics and observation rather than surgical intervention at this time. This is because his bowel has not perforated and that his body is just too small to warrant the risk of an invasive procedure. If things were to get worse for him, the risk of not doing a procedure to put a drain into his belly would be overtaken to minimise damage and the risk of perotinitis. As things are now though the doctors are content to wait it out and let Bailey and the drugs do their thing.
Over the last week Bailey has been on albumine infusions and drugs to try and get his water works going again and gradually he has been blowing up like a balloon as he retained most of the fluids he was given, but this morning the hospital says he is doing well at shifting some of it. We are certainly breathing a little easier now. The wee man is a fighter and he's not giving up.
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26/01/2006
 Yesterday was probably the worst day Bailey has given us in his 3 weeks with us so far. When we telephoned the hospital first thing in the morning, we were told that one of the consultants wanted to speak to us as he hadn't met us yet. This started alarm bells ringing immediately, largely because we had thought that if the consultant wanted to speak with us he would have made sure that he had done so. When we arrived at the hospital we were told that the consultant was seeing two other sets of parents before us and we would be sent for when he was ready.
Natuarally Michelle and I kept our eyes open while we sat by Bailey's incubator and watched while the other parents went out with the consultant to a side room for their discussions. The other parents returned to the ICU after quite long periods and were ashen faced and looked shocked at what they must have been told. Michelle and I began to think that this was to be no ordinary meeting with the doctor to discuss treatment and progress. It appeared that we were to be wheeled in and told bad news. Our turn came and the sister in the ICU asked if it would be alright if the two nurses looking after Bailey could accompany us, something the other parents didn't get. We thought it must be terrible news and the nurses were there to pick us up off the floor after the news we expected was broken to us... Once in the room the consultant asked us what we knew of the problems Bailey had and still has, and Michelle and I explained what we knew. We gave our understanding of what each infection did and what it meant. Once that was done the tone of the meeting changed a little,and for the better. It soon became quite clear that the staff thought we must not fully understand the situation as we were coping far too well. We weren't allowing ourselves to be negative or allowing the situation to beat us. Once the consultant knew for himself that we understood just how seriously ill Bailey is he began to speak about the treatments he is getting and how they expect him to react to them and what he faces in the future. In the end we came away feeling better than we went in. After all the doom and gloom of what the consultant told us, we told him that we would remain positive and never give up on him (not that he was asking us to). There is no text book written for how tiny babies survive or don't so we will be strong for Bailey until we bring him home. We left the hospital in mid afternoon and returned home. At about 6:50 in the evening Michelle took a call from the ICU sister. All she said was that Bailey had taken a massive turn for the worse and we should not waste a single second in getting to the hospital. We got into the car and i'm sure we broke every rule in the highway code but eventually we turned onto the Grosvenor road, which is one of the approach roads to the hospital, then the phone rang, it was 7:28. It was the sister again telling us to slow down, calm down and just get there safely because they "had got him back". Bailey's breathing tube had moved slightly and this had caused his blood oxegyn saturation levels to drop off the scale. His heart had stopped too. He needed heart massage, adrenaline and atropine, to get him going again, but they had managed it. The consultant on call was brought in to oversee the situation. When we arrived Bailey was alert, with his eyes open looking around him,he was a better colour than he had been for days, and he had passed urine which he hadn't been doing for days. All in all he was looking in better shape than he had been for the last week. Eventually we all agreed that the best course for us to follow was to get home and sleep. It was a harrowing night and we came very close to tradgedy but thankfully we were spared this, thanks to the skill and dedication of the team who worked on Bailey. Miracles are still happeng in our little boys life!
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24/01/2006
It is now four days since Bailey was diagnosed with NEC and although he is not yet over it he is holding his own against it. Speaking to a nurse last night she said that as his bowel had not perforated by this stage, that she would be very surprised if it did now perforate. The perforation of the bowel which leads to peritonitis is something which, we are led to believe, happens in the early stages of NEC if it is going to happen at all. Numerous x-ray images yesterday confirmed the integrity of his bowel so we are happy that there is no other complication for the little man.
Nothing more has been said about the other infection that showed up in his blood cultures. This one, ESBL, is the rare one that I mentioned above. It appears from reading on the web, that this is a bug which appeared only 20 years ago and the existence of it is blamed on the perscription of antibiotics which were not strong enough to eradicate the infections for which they were perscribed. The bugs became resistant to the antibiotics and eventually mutated into one of the bugs covered by the term ESBL. Overall Bailey is comfortable, he is still sedated though, to free him from the pain of his infections but that sedation has been gradually reduced over the last few days. His oxegyn requirements and the dependancy on the ventilator have fallen also, and this is very good considering that one of the effects of sedation is that the breathing is affected. Last night Bailey was needing the help of the ventilator at approximately 50% of the rate he needed it the day the infection took hold. Many small changes in his condition, and changes which surprise the nurses and doctors in a positive way confirm our belief that Bailey is a baby who is in receipt of miracle after miracle. the ventilation requirements mentioned above illustrate this perfectly.
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22/01/2006
Bailey continues to be seriously ill, but over the weekend he has been stable, which Michelle and I are taking as a positive, especially after the way the doctors portrayed the usual course of the infection. The story at the moment is that Bailey has not got worse with the NEC infection. The medics have tested more blood and it shows that there is another infection present alongside the NEC. This is a very rare one and of all the doctors in the ICU the only one to have seen it before is one of the consultants and he has only ever seen it twice in his career. They said that the treatment is known and he is being treated for it already.
In himself Bailey is a little better, his colour has improved, his eyes look less sad, and he is back to his old self as far as touching him goes. It is on his terms. Sometimes he lets us, sometimes he kicks or punches us away. Bailey is a very determined boy, both parents are very stubborn so i'm sure that he will continue to fight his fight. It's a tough one to watch and we would gladly change places with him.
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21/01/2006
Today the news isn't quite as good as it has been for much of the last 3 weeks. Bailey has developed a really nasty infection in his intestines. Certainly it was serious enough last night for us to be called up to the hospital to speak to one of the doctors looking after him. When we were told what was wrong with Bailey it really hit us quite hard because the doctors tell it like it is and they always tell us the worst case senario when they tell us how the infection could progress.
Bailey had been fine when we left him at lunchtime,yet by 2:30 in the afternoon he was seriously ill. Treatment for the infection he has, has started swiftly and phone calls from us to the hospital have told us that he's not getting any worse. Last night Bailey was given a blood transfusion and a transfusion of blood plasma and he has also been given antibiotics. A look on the web site has told us that the infection, serious though it is, is one of the most common to affect premature babies, so we are confident that the method of treatment Bailey is getting is a tried and tested one. ICU sister this morning tells us that his colour is good and that his oxegyn requirements are lower, both of which point to him being more comfortable. The antibiotics should show some effect within the next 24 hours.
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19/01/2006
The medical staff have confirmed that all the signs point to Bailey having developed CLD. The most telling is that his blood oxygen saturation can be very unstable. Because he is ventilated by machine, his inhaled oxygen concentration can be varied to suit the way he is breathing. A lot of the time a concentration of 30% is adequate for him unless he moves about a lot and then, like anyone else, his muscles need more oxygen. The problem at the moment is that his lungs are not efficient enough to ransfer the oxygen to his blood at a fast enoug rate when he is mobile to keep him stable. This causes his oxygen saturation to drop and this in turn can make his colour go very pasty, even grey at times. In effect he has a faint. The doctors say that although it isn't desirable for him to be doing this, there should not be any long term problems caused by it. We had already been told about how babies with CLD usually grow out of it by the time they become toddlers, and so the out look for the future is still positive.
All the doctors say that he is still doing well and they have no major concerns about him, and as if to confirm this, they have upped his feed again to 11ml every 2 hours. The infection or infections that Bailey has are being beaten. I don't know how they are measured, but this time last week his infection markers were at 3. Two days later they had shot up to 80, but the doctor explained that this sudden increase could be the death throes of the dying bugs. Sure enough, two days later, the number was down to 21 and yesterday we were told that it was down to 8. Providing he gets no new infections he shouls, at this rate, be clear by the weekend. He has developed a nasty temper too which he uses to full effect to tell us when he is not happy.
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16/01/2006
Bailey had a quiet weekend. Everything was pretty much unchanged today. His umbilical cord stump came away on Sunday morning, so he's a big boy now! Fifteen days old now too and every day that passes makes it a little easier to look to the future. There is talk that the ICU staff might try to wean him off his ventilator towards the end of next week in an attempt to minimize the effects of Chronic Lung Disease. Bailey will have some form of CLD, all babies as small as he is get it if they are ventilated for any length of time, and Bailey has been ventilated since birth. On the plus side, we have been told that most babies grow out of CLD as toddlers and nearly all are clear by the time they go to school. Some though, and these are the minority, are affected by it for longer.
Bailey now has a drip into his head, it's not pretty, but drip sites in the head tend to last longer than those in arms and feet, so if it means that he can keep this one in for a week or so it will give his arms and feet a good chance to recover. He is still fighting and still a character.
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12/01/2006
Bailey is continuing to make good progress in terms of his general condition. Of course, with him being in intensive care there is still a long way to go for him, and us, but in the past few days he has not taken any backward steps. Yesterday he was a little unstable regarding his blood oxygen saturation, every time he moved or got disturbed his readings slipped a little which required his ventilator and the oxygen content of the air he breathes to be adjusted, but these dips were short lived and he soon bounced back once the disturbance was over. Today he was wriggling like a good 'un and the readings were not affected. It just goes to show what a difference a day makes.
His feed is up again. It is partly due to his gain in weight and partly because of his age making his digestive system a little more mature which is making him better able to handle the larger feeds. He is now taking a 9ml feed every 2 hours, with room for adjustment if his blood sugar level is low, ie if there is a dip in his blood sugar levels they will reduce the feed volume and supplement it with an IV dextrose solution to make it right again.
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