Elis has been a bit better today and has only been dipping when he dislodges his prongs from his nose. He has had his caffeine medication suspended as they tested his caffeine levels yesterday and they were off the scale! The caffeine is supposed to be acting as a stimulant to remind him to breathe but can also cause reflux, which they think could be causing some of his desaturations. He was given some Gaviscon yesterday which they think helped him. It'll take a few days for the caffeine to clear his body so we'll see what happens...
Tuesday, 31 July 2007
Monday, 30 July 2007
30/7/07
Today has been a funny old day really. Elis has hit some real highs and real lows during the day, whereas I have gone for consistancy and not been able to drag myself up from the lows.
When I arrived at the hospital this morning, the news was still good as Elis had continued his good behaviour through the night and had a settled start to the day. Next thing I know, he is desaturating and ends up being bagged three times in about an hour. After a run of stability, this sudden slide hit me hard, especially as it followed right after the consultant saying how disappointed he was with Elis' progress on this course of steroids.
Elis did settle down again and whilst I was out for lunch, his oxygen came down as low as 62%, which is lower than it has been for well over a week. However, just before I came back into intensive care, the nurse changed his nappy, which he was so unhappy about, he needed bagging again. Once again though, once he was settled down again, his oxygen requirement came down to about 70%.
I have just phoned the hospital to get an update, and unbelievably, he has been fine all evening and his oxygen is currently down to 60% and his blood oxygen saturation at 100%, which is almost unheard of based on his recent performance. It's so strange that he can do so well and so poorly in one day. Again, we're left hoping that he can keep up the good performance...
When I arrived at the hospital this morning, the news was still good as Elis had continued his good behaviour through the night and had a settled start to the day. Next thing I know, he is desaturating and ends up being bagged three times in about an hour. After a run of stability, this sudden slide hit me hard, especially as it followed right after the consultant saying how disappointed he was with Elis' progress on this course of steroids.
Elis did settle down again and whilst I was out for lunch, his oxygen came down as low as 62%, which is lower than it has been for well over a week. However, just before I came back into intensive care, the nurse changed his nappy, which he was so unhappy about, he needed bagging again. Once again though, once he was settled down again, his oxygen requirement came down to about 70%.
I have just phoned the hospital to get an update, and unbelievably, he has been fine all evening and his oxygen is currently down to 60% and his blood oxygen saturation at 100%, which is almost unheard of based on his recent performance. It's so strange that he can do so well and so poorly in one day. Again, we're left hoping that he can keep up the good performance...
Sunday, 29 July 2007
29/7/07
Elis has had a good weekend, having only been bagged once, early yesterday morning, and I've had cuddles both yesterday and today. He was wrapped up snug this morning at 10.30 and hardly moved until 5pm when I changed his nappy etc. before getting him out for his (my) cuddle. It actually made for such a quiet visit that I sat by his incubator whilst he slept and replied to some emails on my pda!
Friday, 27 July 2007
27/7/07
Elis has been relatively stable again over the last two days although he has still required bagging a couple of times a night. His oxygen requirement has come down slightly and despite the bagging instances, his blood oxygen saturation is generally much more stable.
He has put on another 60 grams (about 2oz) over the past 10 days, which isn't a huge amount, but at least its going in the right direction! He was really active this morning fighting his prongs and his feeding tube and was having a really good look around. He's got so good at grabbing his feeding tube and pulling it out that the nurses try to make it harder by putting mitts on him but he still pulled it out twice this morning! Attaboy!!!
He has put on another 60 grams (about 2oz) over the past 10 days, which isn't a huge amount, but at least its going in the right direction! He was really active this morning fighting his prongs and his feeding tube and was having a really good look around. He's got so good at grabbing his feeding tube and pulling it out that the nurses try to make it harder by putting mitts on him but he still pulled it out twice this morning! Attaboy!!!
Wednesday, 25 July 2007
25/7/07
Elis has been relatively stable over the last couple of days and the steroids seem to be taking effect again as his oxygen requirement has come down a bit this evening. He was very happy out today for a cuddle and had his first cuddle with Glyn.
Monday, 23 July 2007
23/7/07
It's all been a bit up and down for Elis today. He didn't have a good night and was bagged once, although he settled a bit this morning - until I arrived and his blood desaturated and heart slowed down! I think some secretions in his throat can be blamed for that as his breathing was ok when I had him out of the incubator for a little cuddle.
For the first time he was lifting his head right up and trying to turn it from one side to the other (repeatedly!). Since he has about three inches of nasal assembly attached to his nose to help him breathe, this proved troublesome as he kept pulling his prongs out of his nose and we'd have to chase him to reconnect the oxygen each time he turned his head. Eventually he won and I just held him in my arms on his back - he couldn't avoid the prongs that way!
He's had more blood tests today which indicate that he is still clear of systemic infection, but he needs another blood transfusion, which might help keep his saturation levels higher. Transfusion number six is underway even as I type. I've just phoned the hospital and so far it has gone fine.
However, as his breathing doesn't seem to have improved over the last week, the consultant currently leading his care has concluded that we should begin another series of steroids to reduce the inflamation in his lungs and give them another chance to start repairing. The first dose was given to him this evening, so fingers crossed that he will receive the full benefits and avoid the side effects this time around.
For the first time he was lifting his head right up and trying to turn it from one side to the other (repeatedly!). Since he has about three inches of nasal assembly attached to his nose to help him breathe, this proved troublesome as he kept pulling his prongs out of his nose and we'd have to chase him to reconnect the oxygen each time he turned his head. Eventually he won and I just held him in my arms on his back - he couldn't avoid the prongs that way!
He's had more blood tests today which indicate that he is still clear of systemic infection, but he needs another blood transfusion, which might help keep his saturation levels higher. Transfusion number six is underway even as I type. I've just phoned the hospital and so far it has gone fine.
However, as his breathing doesn't seem to have improved over the last week, the consultant currently leading his care has concluded that we should begin another series of steroids to reduce the inflamation in his lungs and give them another chance to start repairing. The first dose was given to him this evening, so fingers crossed that he will receive the full benefits and avoid the side effects this time around.
Sunday, 22 July 2007
22/7/07
Today Elis has been tried on two-hourly feeds, which he tolerated for most of the day but then decided he'd had enough and started to desaturate and have episodes of his heart rate slowing. Once he was back on continuous feeds he settled back down again and was lovely when Glyn and I were there with him. They'll try changing his feeding pattern again tomorrow and see what happens. The plan is to still try to make progress with him in other areas whilst his lungs (hopefully) start the slow process of repairing.
Saturday, 21 July 2007
Friday, 20 July 2007
Adding comments
A number of you have let me know that you've had problems leaving comments on the blog... Sorry!!! The situation should now be resolved!
20/7/07
Today was not too bad despite the fact that it would seem that Elis has e.coli in his lungs again/still (I'm not sure which) as well as another bacteria, but he's still on four different types of antibiotic so hopefully it shouldn't become a problem. Nevertheless, the consultant has requested weekly tests to see what is growing in his lungs.
The good news is that he has managed to increase his own HB level (red blood cell count) in the last day so if he can keep this up he should be able to postpone his next blood transfusion.
The other bit of good news is that as he was pretty stable again today, he came out for another cuddle with me this afternoon!
The good news is that he has managed to increase his own HB level (red blood cell count) in the last day so if he can keep this up he should be able to postpone his next blood transfusion.
The other bit of good news is that as he was pretty stable again today, he came out for another cuddle with me this afternoon!
Thursday, 19 July 2007
19/7/07
He's been a good boy today! He needed bagging this morning but that was because he desaturated when given his IV antibiotics. It must hurt as it goes in because he has done the same thing before.
The unit was really busy today so he was pretty much left alone all day. It was all worthwhile because then I had him out for skin to skin cwtches for a couple of hours. Like last week, he settled down relatively quickly and then was as happy as the proverbial pig! His prongs weren't even in his nose for most of the time yet still his oxygen saturation was good. Ahhhh....
The unit was really busy today so he was pretty much left alone all day. It was all worthwhile because then I had him out for skin to skin cwtches for a couple of hours. Like last week, he settled down relatively quickly and then was as happy as the proverbial pig! His prongs weren't even in his nose for most of the time yet still his oxygen saturation was good. Ahhhh....
Wednesday, 18 July 2007
18/7/07 - 1 month old
Things haven't really changed much for Elis today, except he is now officially one month old! He's been ok today, although has been bagged on two occasions when his oxygen saturation levels dipped too low for too long. He settled down quite nicely whilst I was there during the day and we're going back in to see him this evening - he's been told his grandparents are coming in so must be on best behaviour!
Tuesday, 17 July 2007
17/7/07
Things have been a bit more settled for Elis today. He only had to be 'bagged' once last night and his CO2 levels have been closer to what they are tolerating with him. He is still not symptomatic of infection and his eyes are looking better than they were yesterday.
The consultant switched the ventilator back onto CPAP this morning and they tried to put a 'long prong' up Elis' nose as an alternative way of delivering ventilation support. Unfortunately the smallest tube they have is 2.5mm and Elis' nose canal is not yet big enough at the bridge. They gave it a few goes but all he got was a nose bleed. They'll try again next week when he's bigger.
Elis was weighed again this morning and has now topped the 1kg mark. He's put on 90g since Friday and now weighs 1030g. He's now getting a massive 7.1ml of milk per hour, so hopefully he'll grow enough before they try the long-prong again next week.
Another small but significant milestone today was seeing him cough for the first time. It's a really useful and important reflex for him to have, especially as he is still having problems with secretions in his lungs and throat - he certainly loosened something with his cough today!
The consultant switched the ventilator back onto CPAP this morning and they tried to put a 'long prong' up Elis' nose as an alternative way of delivering ventilation support. Unfortunately the smallest tube they have is 2.5mm and Elis' nose canal is not yet big enough at the bridge. They gave it a few goes but all he got was a nose bleed. They'll try again next week when he's bigger.
Elis was weighed again this morning and has now topped the 1kg mark. He's put on 90g since Friday and now weighs 1030g. He's now getting a massive 7.1ml of milk per hour, so hopefully he'll grow enough before they try the long-prong again next week.
Another small but significant milestone today was seeing him cough for the first time. It's a really useful and important reflex for him to have, especially as he is still having problems with secretions in his lungs and throat - he certainly loosened something with his cough today!
Monday, 16 July 2007
Photos of Elis
UPDATE 18/7/07: Some photos are now available on the picasa web album!
We're having problems with our broadband at the moment (currently skinnyband) so I can't upload photos either to this blog or to our picasa web album. As soon as we've resolved the connection speed issue, I'll publish some pics.
We're having problems with our broadband at the moment (currently skinnyband) so I can't upload photos either to this blog or to our picasa web album. As soon as we've resolved the connection speed issue, I'll publish some pics.
16/07/07
Things have taken a backward step today with Elis as he didn't have a good night and had a bad blood gas result this morning. His ventilation has been changed from CPAP to SIMV which is giving him 10 supported breaths per minute and should help clear the high levels of CO2 in his blood.
More of a concern is that they think he may have developed an infection as he has had thick secretions in his lungs again and his colour is not so good today. They have taken blood cultures and also did a lumbar puncture on him this morning. The good news is that preliminary indications from the lumbar puncture suggest no infection in the cerebral spinal fluid, but it will be 48 hours before the culture results are available to see if any bacteria grows. Meanwhile, it would seem that he does have an infection in his eyes and they are really gammy today - such a shame when he has only just started opening them regularly and having a good look around.
Just to add to his problems, it has been noted that he now has a swelling in his groin, which at the moment the doctors think is just fluid, but which can become hernias in premature babies if some bowel drops into the cavity. Just something else to keep an eye on.
Poor little thing has cannulas in both hands again now and is back on the antibiotics as a precaution until the test results are available, but he's not a happy chappy today.
More of a concern is that they think he may have developed an infection as he has had thick secretions in his lungs again and his colour is not so good today. They have taken blood cultures and also did a lumbar puncture on him this morning. The good news is that preliminary indications from the lumbar puncture suggest no infection in the cerebral spinal fluid, but it will be 48 hours before the culture results are available to see if any bacteria grows. Meanwhile, it would seem that he does have an infection in his eyes and they are really gammy today - such a shame when he has only just started opening them regularly and having a good look around.
Just to add to his problems, it has been noted that he now has a swelling in his groin, which at the moment the doctors think is just fluid, but which can become hernias in premature babies if some bowel drops into the cavity. Just something else to keep an eye on.
Poor little thing has cannulas in both hands again now and is back on the antibiotics as a precaution until the test results are available, but he's not a happy chappy today.
His first month
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...
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...
Elis' early arrival
I begin with an apology as some of you may not have been aware that I was pregnant in the first place, so to find out that Glyn and I now have a son called Elis may come as a bit of a surprise! The thing is, things started going a little wrong in the pregnancy in March and then went from bad to worse, so we weren't sure what the outcome would be. Anyway, he wasn't due until the end of September, so we thought we had plenty of time...
I was in and out of hospital a few times from March when I was 13 weeks pregnant. I then went in on April 26th and stayed there until I was discharged on July 8th, almost three weeks after Elis was born. I had eventually been diagnosed as having placenta previa, which is where the placenta covers the cervix and can lead to bleeding (which it certainly did) and requires delivery via caesarian section to keep both mum and baby safe (which in our case, we didn't). I was getting progressively worse during my stay in hospital and had seven blood transfusions to try to combat the anaemia and got to the stage where I was confined to a horizontal position in bed (although the hospital did get me a special pressure relieving mattress!) I was even taken for my ultrasound scans still in bed. Fortunately, throughout the weeks of blood loss, the baby's heartbeat remained relatively unchanged and the professionals went from predicting that the pregnancy wouldn't last to believing that perhaps we might just make it.
Just to compound the issue though, the scans also showed that the baby had barely enough amniotic fluid to sustain its lung development (and certainly too little to get a good view of what sex it was, although they did think it was a boy).
When we finally made it to 24 weeks and the baby was technically 'viable', we had had several discussions with the paediatricians regarding the possible outcomes should something happen and the baby need to be delivered at that stage in the pregnancy. I was also given several doses of steroids to help the baby's lung development just in case of an early delivery.
To cut a long story short, after a few false alerts, I went into labour without anyone recognising it. Somehow, Elis had managed to squeeze under the placenta and it was only when I could feel him coming that the midwives sprung into action and he was delivered breech less than five minutes after I arrived on the labour ward at 01:59 on Monday 18th June. Glyn had been telephoned and told to come in as I was in a lot of pain but unfortunately he didn't make it to hospital in time for the birth. In fact, when he arrived at 02:15, the theatre was empty except for me and no one had told him what had happened so it came as a complete shock when I told him he'd missed the birth and that we had a son. We named him Elis Morgan Rhisiart there and then in the theatre. It was some time later that someone came to tell us that he weighed 820g (1lb 13oz) and that although he wasn't breathing when he was born, he was now on a ventilator with a tube into his lungs and the paediaticians were trying to stabilise him.
The picture became clearer later in the day when Glyn took me in a wheelchair to the Neonatal Intensive Care Unit to see him. As well as the tube to help him breath, he was having phototherapy to treat jaundice and the severe bruising to his lower body from the breech delivery and was receiving a raft of medications to combat other problems including stabilising his blood pressure, which was a problem during the first few days. Although tiny, he still looked bigger than I expected him to be when I first saw him. Having gone through weeks and weeks of uncertainty during the pregnancy, finally he was here and we could see him, but the uncertainty was to continue. At least without the placenta, I was able to start getting up again and begin to rebuild my own strength.
I was in and out of hospital a few times from March when I was 13 weeks pregnant. I then went in on April 26th and stayed there until I was discharged on July 8th, almost three weeks after Elis was born. I had eventually been diagnosed as having placenta previa, which is where the placenta covers the cervix and can lead to bleeding (which it certainly did) and requires delivery via caesarian section to keep both mum and baby safe (which in our case, we didn't). I was getting progressively worse during my stay in hospital and had seven blood transfusions to try to combat the anaemia and got to the stage where I was confined to a horizontal position in bed (although the hospital did get me a special pressure relieving mattress!) I was even taken for my ultrasound scans still in bed. Fortunately, throughout the weeks of blood loss, the baby's heartbeat remained relatively unchanged and the professionals went from predicting that the pregnancy wouldn't last to believing that perhaps we might just make it.
Just to compound the issue though, the scans also showed that the baby had barely enough amniotic fluid to sustain its lung development (and certainly too little to get a good view of what sex it was, although they did think it was a boy).
When we finally made it to 24 weeks and the baby was technically 'viable', we had had several discussions with the paediatricians regarding the possible outcomes should something happen and the baby need to be delivered at that stage in the pregnancy. I was also given several doses of steroids to help the baby's lung development just in case of an early delivery.
To cut a long story short, after a few false alerts, I went into labour without anyone recognising it. Somehow, Elis had managed to squeeze under the placenta and it was only when I could feel him coming that the midwives sprung into action and he was delivered breech less than five minutes after I arrived on the labour ward at 01:59 on Monday 18th June. Glyn had been telephoned and told to come in as I was in a lot of pain but unfortunately he didn't make it to hospital in time for the birth. In fact, when he arrived at 02:15, the theatre was empty except for me and no one had told him what had happened so it came as a complete shock when I told him he'd missed the birth and that we had a son. We named him Elis Morgan Rhisiart there and then in the theatre. It was some time later that someone came to tell us that he weighed 820g (1lb 13oz) and that although he wasn't breathing when he was born, he was now on a ventilator with a tube into his lungs and the paediaticians were trying to stabilise him.
The picture became clearer later in the day when Glyn took me in a wheelchair to the Neonatal Intensive Care Unit to see him. As well as the tube to help him breath, he was having phototherapy to treat jaundice and the severe bruising to his lower body from the breech delivery and was receiving a raft of medications to combat other problems including stabilising his blood pressure, which was a problem during the first few days. Although tiny, he still looked bigger than I expected him to be when I first saw him. Having gone through weeks and weeks of uncertainty during the pregnancy, finally he was here and we could see him, but the uncertainty was to continue. At least without the placenta, I was able to start getting up again and begin to rebuild my own strength.
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