A busy few days for the Chaffins with a couple more still to come!
Mummy had her MBA exams on Sunday (not really sure how they went), so didn't visit on Saturday and has been visiting in the evenings instead as her course also runs all of this week. Dad has been keeping up the daily vigil as well as packing up the last few bits in the house ready for the move on Friday.
First the good news - Briony has put on some more weight and is now 1390g with another weigh-in on Wednesday. Her oxygen requirement is also slightly better at around 34-35%.
On the other side the weight gain is not really at a high enough level, so tomorrow Briony will be started on fortifier again to see if that can help as she is not where she should be on the premature growth charts (10th percentile for those of you who understand these things). It is also likely that she will have to have her third blood transfusion tomorrow as the haemogloblin level has dropped still further and is now at a point where they think it might be compromising her breathing a little. The final thing that they are becoming more concerned about are her lungs. At thsi point they should be able to start weaning her off, but every time they try she is unable to cope. They want to start some more medicines (diuretics) to see if these will help, but the evidence is a little patchy that they will actually do anything and they tend to cause problems with weight gain which has always been an issue for Briony so we have asked them to hold off for a couple of days. Of course if things change then we will reconsider. We just don't want to start something that doesn't really have any very clear evidence to say that it works and then upset the weight gain.
Monday, 6 September 2010
Saturday, 4 September 2010
3rd September
A better day today.....
Briony seems to have improved a little - we're not sure if it is the increased flow from the breathing support or the medicines they have re-started to help with her suspected reflux. Stephen and I both think it is probably the reflux medicines as it took a little while for her to improve rather than immediately (which it would have been if it had been the breathing support).
The doctors had a long discussion with me about whether to start her on longer term diuretics, as there is some evidence to say that it may help wean premature babies of their breathing support sooner than not using it. However, there is also evidence to say that it has no benefit at all! As with all medicines, there are side effects to the drug that they would use which generally give them problems with their weight gain and issues longer term with their kidneys (which will resolve with time). Having considered it and given it took us so long to get the weight gain sorted we have decided that we don't want to consider it as an option just yet. If she gets worse we might consider it. It would mean her being on the drugs for a couple of months and its not really a road we want to go down unless we really have to.
Oxygen requirement is now between 32% and 36%, which is better than the 38-40% we were using earlier on in the week.
Briony is now in the next size up baby-grow. It fits her pretty well, with the exception of the arms which are too big for her!
Daddy had a cuddle yesterday evening and got home to find that Briony had dribbled all down his chest! He didn't mind though and said it was actually quite sweet.
Mum probably isn't going to go over today as her exams are tomorrow, but Dad will be visiting a little later.
Thursday, 2 September 2010
2nd September
A mediocre day today
Briony's breathing support has been increased again. She is now on 6.5 litres of vapotherm, rather than 6 litres and is up at 40% oxygen. They have also restarted her medicines for reflux as she is worse after each of her feeds. She seems to be growing into her lung disease rather than out of it.
Nanny and Grandad Chaffin visited today. Briony was wide awake with arms and legs everywhere for Nanny and was showing off to Grandad by moving her head around from where it had been put. At one point she turned her head round completely the other way, but had a rather abrupt ending when her muscles got tired and she face planted onto her bed!
Her hands and feet feel cold again, so my money is on another transfusion in the next few days....
Briony's breathing support has been increased again. She is now on 6.5 litres of vapotherm, rather than 6 litres and is up at 40% oxygen. They have also restarted her medicines for reflux as she is worse after each of her feeds. She seems to be growing into her lung disease rather than out of it.
Nanny and Grandad Chaffin visited today. Briony was wide awake with arms and legs everywhere for Nanny and was showing off to Grandad by moving her head around from where it had been put. At one point she turned her head round completely the other way, but had a rather abrupt ending when her muscles got tired and she face planted onto her bed!
Her hands and feet feel cold again, so my money is on another transfusion in the next few days....
Wednesday, 1 September 2010
1st September
Some days it's hard to stay positive and today has been one of those days.
Having said she was improving, I seem to have fated it as she didn't have a very good night last night with her oxygen requirement needing to be increased again. She's now on 36-40%. Part of it is because we now need to start putting her on her back rather than on her front all the time as she needs to get used to being on her back. She hates it though! The nurses have noticed that she is getting a bit of an elongated head which is because she is always lying on one side of it.
The Consultant came to talk to me this morning and said that they are not really sure why her oxygen requirement has increased again. They just need to watch her and see what happens (not that they don't usually watch her in any case). From the X-rays that they have taken her lungs aren't in great shape from her being born so early and they are hoping that she is just going through one of her little dips. It's a bit depressing though as she might need to go back onto a ventilator again if things continue. It's also looking increasingly likely that she will need some kind of breathing support in the longer term as apparently it takes up to 2 years to grow out of the chronic lung disease of prematurity. They did give her a diuretic last night to see if there was any fluid on her lungs that they needed to clear, but this doesn't seem to have made any difference.
There was another weigh in today. Perhaps unsurprisingly Briony remained exactly the same weight, but given that she peed 70mls (or around 5% of her bodyweight!) yesterday because of the diuretic it's not a huge issue at this point in time. She has definitely grown out of the smallest baby-grows so I will need to go and get her some more tomorrow, which is a bit of a milestone.
No cuddles today - given that she has deteriorated a little we have just left her to sleep today - she has barely opened an eye all day!
Having said she was improving, I seem to have fated it as she didn't have a very good night last night with her oxygen requirement needing to be increased again. She's now on 36-40%. Part of it is because we now need to start putting her on her back rather than on her front all the time as she needs to get used to being on her back. She hates it though! The nurses have noticed that she is getting a bit of an elongated head which is because she is always lying on one side of it.
The Consultant came to talk to me this morning and said that they are not really sure why her oxygen requirement has increased again. They just need to watch her and see what happens (not that they don't usually watch her in any case). From the X-rays that they have taken her lungs aren't in great shape from her being born so early and they are hoping that she is just going through one of her little dips. It's a bit depressing though as she might need to go back onto a ventilator again if things continue. It's also looking increasingly likely that she will need some kind of breathing support in the longer term as apparently it takes up to 2 years to grow out of the chronic lung disease of prematurity. They did give her a diuretic last night to see if there was any fluid on her lungs that they needed to clear, but this doesn't seem to have made any difference.
There was another weigh in today. Perhaps unsurprisingly Briony remained exactly the same weight, but given that she peed 70mls (or around 5% of her bodyweight!) yesterday because of the diuretic it's not a huge issue at this point in time. She has definitely grown out of the smallest baby-grows so I will need to go and get her some more tomorrow, which is a bit of a milestone.
No cuddles today - given that she has deteriorated a little we have just left her to sleep today - she has barely opened an eye all day!
Tuesday, 31 August 2010
30-31st August
Briony's first Bank Holiday weekend!
Things continue to progress.....
Briony did have an infection, and will stay on the antibiotics for another couple of days to be on the safe side. They have really helped with her breathing as she now doesn't need as much oxygen. She does still require around 30-33%, but it's better than the 40% she was needing a few days ago.
Other than that, no real major developments to report. It's just a case of feeding her and waiting for her lungs to improve really! The bradycardias (where her heart rate drops too low) seem to have pretty much stopped now, so that is great as it is another step in the right direction. The next big step will be her moving from a temperature controlled incubator to a medical cot, where she will have to regulate her temperature on her own. Hopefully this will be in the next week or so, fingers crossed!
Things continue to progress.....
Briony did have an infection, and will stay on the antibiotics for another couple of days to be on the safe side. They have really helped with her breathing as she now doesn't need as much oxygen. She does still require around 30-33%, but it's better than the 40% she was needing a few days ago.
Other than that, no real major developments to report. It's just a case of feeding her and waiting for her lungs to improve really! The bradycardias (where her heart rate drops too low) seem to have pretty much stopped now, so that is great as it is another step in the right direction. The next big step will be her moving from a temperature controlled incubator to a medical cot, where she will have to regulate her temperature on her own. Hopefully this will be in the next week or so, fingers crossed!
Sunday, 29 August 2010
27th-29th August
A hectic few days for the Chaffins, hence the slight lack of posts.
Things in general are progressing in the right direction, but Miss Chaffin has been a bit of little monkey over the last few days! The staff at Stoke Mandeville have now been trained on Vapotherm, so she is back on that rather than the CPAP, which means that the Star Wars mask is no more! Having said that, she seems to be on a much higher oxygen concentration than when she was at the Radcliffe. She is on around 30% when she is on her front and around 40% when she is on her back. The nurses have started to put her on her back now - although she hates it she needs to start getting used to it as she will need to go on her back when she finally comes home.
Her breathing had become a bit laboured earlier on in the week, so we have been through the usual blood tests, cultures and starting antibiotics in case she has an infection. She is still on the antibiotics and the cultures aren't back yet. It is either that, or she is refluxing some of her feed. We will wait until the cultures come back and then if it is not an infection then some of the anti-reflux medications will be re-started. Feeds have now moved to 3 hourly, again to try and start getting her used to what will happen at home.
Weight is still moving in the right direction as this morning she weighed 1295g (2lbs and 13 oz) - we have noticed that she is also starting to get a little bit of a double chin which is really quite sweet!
The other big news is that because she is now really sucking at her dummy the nurses recommended to try her at the breast when they are giving her the feed down the tube, so that she starts to associate getting milk with being on me. It was very sweet as although she didn't actively feed from me, she did have a bit of a go and with time the nurses think she will get there. Pretty good really given that apparently babies don't develop the suckling reflex normally until 34 weeks and she will be 32 weeks on Monday.
Thursday, 26 August 2010
25th-26th August
The big weigh in happened yesterday and Briony weighed 1205g or 2lbs 10 ounces in old money. Roll on 3lbs! We really feel like we are getting there now.
Briony had her eye test earlier in the week and is pretty much fine. There are a couple of minor issues, but apparently these will resolve with time.
The pressure on the CPAP has also been lowered - it means that instead of the machine feeding Briony air/oxygen without her having to work too hard for it she is now having to learn to do it on her own. She is doing pretty well at it, although it does mean that her oxygen requirement has increased. You can't have everything though!
The nurses are starting to take her off the CPAP completely for a few hours a day. She still needs oxygen, so this is given either via nasal prongs, or fed into her incubator for her to breathe all on her own.
Mummy and Daddy have been allowed cuddles with her just on the nasal prongs in the last couple of days, which is lovely as we can hear all the little gurgles and mutterings that she is making, rather than the constant hiss of the CPAP machine. She is getting more and more active, raising her head and looking around when she is out for cuddles.
She has been working quite hard with her respiration, which means she is breathing quite fast and seems to be dropping her oxygen saturation a little more often than normal. They think this could either be reflux or a possible infection. They were going to see how she went for the rest of the day and then start the usual round of screeing tests to rule an infection out.
We're working our way through Beatrix Potter which seems to calm Briony down. Or perhaps that is just the lack of sleep making me think that!
More photos tomorrow.
Briony had her eye test earlier in the week and is pretty much fine. There are a couple of minor issues, but apparently these will resolve with time.
The pressure on the CPAP has also been lowered - it means that instead of the machine feeding Briony air/oxygen without her having to work too hard for it she is now having to learn to do it on her own. She is doing pretty well at it, although it does mean that her oxygen requirement has increased. You can't have everything though!
The nurses are starting to take her off the CPAP completely for a few hours a day. She still needs oxygen, so this is given either via nasal prongs, or fed into her incubator for her to breathe all on her own.
Mummy and Daddy have been allowed cuddles with her just on the nasal prongs in the last couple of days, which is lovely as we can hear all the little gurgles and mutterings that she is making, rather than the constant hiss of the CPAP machine. She is getting more and more active, raising her head and looking around when she is out for cuddles.
She has been working quite hard with her respiration, which means she is breathing quite fast and seems to be dropping her oxygen saturation a little more often than normal. They think this could either be reflux or a possible infection. They were going to see how she went for the rest of the day and then start the usual round of screeing tests to rule an infection out.
We're working our way through Beatrix Potter which seems to calm Briony down. Or perhaps that is just the lack of sleep making me think that!
More photos tomorrow.
Subscribe to:
Posts (Atom)