Well this time I'm in the Library as still no internet or phone line at home and there won't be one for the next couple of weeks or so.
The rollercoaster of SCBU continues....we have had good days and bad days. Today is unfortunately a bad day.
Briony had moved from the high dependency nursery to the "getting ready to go home nursery" a couple of days ago which had really excited both Stephen and I as after 10 long weeks it looked like we might be getting nearer to getting her home. She had also come off the vapotherm (actually the machine broke!) and was on low-flow nasal oxygen which would be what she would come home on. She had also put on a huge amount of weight (for her in any case) and at the last weigh in yesterday was 1.825kg (a touch over 4lbs in old money).
However, last night both Stephen and I thought that things weren't quite right with her - she just wasn't as settled as she normally was. We were right - this morning she has unfortunately had to be moved back to the high dependency unit as she has another infection. This has caused her oxygen requirement to more than double overnight and she is desaturating when I try to feed her so we are having to tube feed her once more, which is a shame as we were just starting to get her established on the breast feeding.
There have been loads of vistors (too many to list!) since the last blog - as usual Briony is very popular!
It really is a marathon as just as we could see light at the end of the tunnel we feel it has been snatched away from us again. Almost 3 months old and still no nearer to coming home.
Thursday, 30 September 2010
Tuesday, 14 September 2010
14th September
I'm sitting in Starbucks writing this, so this will be the last post until we have managed to get the broadband sorted at home which is looking like it could take a number of weeks (BT don't know the meaning of customer services). There is also no phone line or mobile phone reception in the new house, so it will be a few weeks before we are contactable easily, except for when Stephen is at work, when he can be contacted on his mobile.
Briony is slowly getting there, although we still have a long way to go. They are now slowly weaning her off the oxygen support, although there is a strong likelihood that she will need to go home on oxygen as she isn't tolerating it particularly well. However, she is looking cuter by the day and has started crying quite a bit, which I guess is a good sign!
She is also due another blood transfusion today, which they are hoping may help with the oxygen requirements. They have tried to lay off the transfusion but she has sunk to a level where they are not happy to leave her without it for any longer. Weight is up slightly to 1.5kg.
Visitors are now more than welcome again now Mum's exams are over, although contact Stephen to arrange the bookings! I only have phone reception whilst over at the hospital when it should be turned off in any case.....
Briony is slowly getting there, although we still have a long way to go. They are now slowly weaning her off the oxygen support, although there is a strong likelihood that she will need to go home on oxygen as she isn't tolerating it particularly well. However, she is looking cuter by the day and has started crying quite a bit, which I guess is a good sign!
She is also due another blood transfusion today, which they are hoping may help with the oxygen requirements. They have tried to lay off the transfusion but she has sunk to a level where they are not happy to leave her without it for any longer. Weight is up slightly to 1.5kg.
Visitors are now more than welcome again now Mum's exams are over, although contact Stephen to arrange the bookings! I only have phone reception whilst over at the hospital when it should be turned off in any case.....
Wednesday, 8 September 2010
7-8th September
Briony has had a good couple of days!
We're glad that we said no to the diuretics. Something has changed in Miss Chaffin over the last couple of days as her oxygen requirements have dropped a little (finally). She now needs between 28 and 32%, which is finally starting to move in the right direction. We're still not where we need to be, but at least it is now in the right direction!
We got a letter through from the GP yesterday saying that they had booked her in for her primary immunisations next week. It was a bit sad as I had to ring and say that she is still in hospital. It just reminded me that she is now 2 months old and we aren't able to do any of the things that "normal" new Mums and Dads do.
They haven't started the fortifier either, as when they weighed Briony yesterday she had put on 90g since Sunday - she now weighs in at 1480g (3lbs 4oz), so again we are getting to where we need to be.
Mummy and Daddy are almost ready for the move tomorrow. There may be a lack of posts for a few days for a couple of reasons; firstly we can't get the new broadband set up until we are actually in the new house, and secondly there is a fault on both the phone and broadband at home - we have not been able to use either since Monday, so apologies if anyone is trying to get hold of us - at the moment you can't!
We're glad that we said no to the diuretics. Something has changed in Miss Chaffin over the last couple of days as her oxygen requirements have dropped a little (finally). She now needs between 28 and 32%, which is finally starting to move in the right direction. We're still not where we need to be, but at least it is now in the right direction!
We got a letter through from the GP yesterday saying that they had booked her in for her primary immunisations next week. It was a bit sad as I had to ring and say that she is still in hospital. It just reminded me that she is now 2 months old and we aren't able to do any of the things that "normal" new Mums and Dads do.
They haven't started the fortifier either, as when they weighed Briony yesterday she had put on 90g since Sunday - she now weighs in at 1480g (3lbs 4oz), so again we are getting to where we need to be.
Mummy and Daddy are almost ready for the move tomorrow. There may be a lack of posts for a few days for a couple of reasons; firstly we can't get the new broadband set up until we are actually in the new house, and secondly there is a fault on both the phone and broadband at home - we have not been able to use either since Monday, so apologies if anyone is trying to get hold of us - at the moment you can't!
Monday, 6 September 2010
4th-6th September
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.
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.
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!
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