Today was very long and very tiring. It started off well; the morning report did not contain news of any bagging, which was a welcome surprise.
The drive to NICU in the snow was a bit hairy, but even a massive two inches of the white stuff wouldn't stop us seeing Willow and Stanley. Driving past the park gave us a glimpse of our happy future, where we'll all go out sledging and throw snowballs at Mummy; but we still have a long way to go before any of that can happen.
The children were both well behaved today, but we were having a frustratingly worrying time with Stanley's new monitor. It was going off constantly, his oxygen saturation levels swinging all over the place. We had a chat to the doc, who put our minds at rest with some straight talking, as usual. Stanley's lungs are still in pretty bad shape due to his chronic lung disease and all he's been through, so they're still not working properly. These fluctuations are nothing too much to worry about though, it just means that we have to sit through the most annoyingly loud beeping noise for a few hours a day. We should be used to annoyingly loud beeping noises after 85 days of them, but this one even more annoying, a bit louder and definitely beepier.
After a treacherous journey home (the majority of that treacherousness coming from our visit to Asda, not the increasingly icy roads), we'll do it all again tomorrow.
Saturday 18 December 2010
Friday 17 December 2010
Thursday 16th and Friday 17th December
The week has ended in a more positively-facing direction than in which it started.
Stanley's blood cultures came back from the lab nicely negative, so his anti-biotics have been stopped. His eye-gunk sample did contain some kind of bug, but the eye-drops took care of that anyway. He was still not 100% Stanley today, but very nearly there - he even managed his best breast-feed to date.
Willow had yet another blood transfusion on Thursday, her seventh so far. It should be her last, as her bone marrow is just about starting to create new blood now. She needed this one though, to boost her red blood cell count to improve her whole lung-breathing-living problems that she has. It seems to be doing the trick - by today she was more stable, with no major incidents. She'd been on CPAP constantly for a couple of days til this morning, to help give her lungs a bit of a rest after a rocky start to the week. She did have a good period of five hours on the prongs today, so let's hope she's starting to turn that corner.
I've got four days off work at the moment, which means I can concentrate purely on the family, and not have to worry about trivial matters which might be going on in the outside world. That's a lot more hours to spend in hospital, watching our babies growing all the time. Talking of growing, they are now out of 'Micro' sized nappies, and into the smallest 'New Baby' size. I'm sure neither of them will have any problems filling those up though.
The babies are twelve weeks old today, which means they are sixteen days away from receiving their '100 Day Cake' from the NICU nurses. We were hoping they'd never get that cake, and would have been home with us by Day 100 - but on the bright side, at least we won't have to worry about dinner that day.
Stanley's blood cultures came back from the lab nicely negative, so his anti-biotics have been stopped. His eye-gunk sample did contain some kind of bug, but the eye-drops took care of that anyway. He was still not 100% Stanley today, but very nearly there - he even managed his best breast-feed to date.
Willow had yet another blood transfusion on Thursday, her seventh so far. It should be her last, as her bone marrow is just about starting to create new blood now. She needed this one though, to boost her red blood cell count to improve her whole lung-breathing-living problems that she has. It seems to be doing the trick - by today she was more stable, with no major incidents. She'd been on CPAP constantly for a couple of days til this morning, to help give her lungs a bit of a rest after a rocky start to the week. She did have a good period of five hours on the prongs today, so let's hope she's starting to turn that corner.
I've got four days off work at the moment, which means I can concentrate purely on the family, and not have to worry about trivial matters which might be going on in the outside world. That's a lot more hours to spend in hospital, watching our babies growing all the time. Talking of growing, they are now out of 'Micro' sized nappies, and into the smallest 'New Baby' size. I'm sure neither of them will have any problems filling those up though.
The babies are twelve weeks old today, which means they are sixteen days away from receiving their '100 Day Cake' from the NICU nurses. We were hoping they'd never get that cake, and would have been home with us by Day 100 - but on the bright side, at least we won't have to worry about dinner that day.
Wednesday 15 December 2010
Wednesday 15th December
Well, that day wasn't quite as bad. It didn't start too well though.
The morning call revealed a total of four episodes serious enough to require resuscitation with the bag. Good to see Willow and Stanley sharing things already though, with two each. Stanley was started on anti-biotics as a precaution - his bloods didn't show any signs of infection yet, but it's generally too late whenever these results actually come back with anything; so it's better to kill any bugs before they take hold.
By the time I got to NICU after work, Leela was holding Stanley and he was looking much better. His eyes had cleared up quite a bit and he was whinging and moaning, which meant he was getting back to his old self. Willow was still on CPAP and she'll stay on that all night, as she needs a bit of a rest.
So, some sleep would be nice now, and to not hear about any more dramas in tomorrow's breakfast report, please, children.
The morning call revealed a total of four episodes serious enough to require resuscitation with the bag. Good to see Willow and Stanley sharing things already though, with two each. Stanley was started on anti-biotics as a precaution - his bloods didn't show any signs of infection yet, but it's generally too late whenever these results actually come back with anything; so it's better to kill any bugs before they take hold.
By the time I got to NICU after work, Leela was holding Stanley and he was looking much better. His eyes had cleared up quite a bit and he was whinging and moaning, which meant he was getting back to his old self. Willow was still on CPAP and she'll stay on that all night, as she needs a bit of a rest.
So, some sleep would be nice now, and to not hear about any more dramas in tomorrow's breakfast report, please, children.
Tuesday 14th December
Today officially turned out to be pretty rubbish.
I called NICU this morning as usual. I can always tell how well the kids have behaved by the enthusiasm of the nurse on the other end. I could tell today's report was going to contain the word 'bag' at least once, and indeed it did. My heart sinks every time they tell me about Willow's latest episode. I think what makes it worse now is that we are always comparing her to Stanley, who is doing so much better. A few weeks ago, he was doing pretty much the same thing as Willow, but we didn't think as much of it because Willow was still fighting for her life on the ventilator.
When I got into NICU after a day of painting ceilings (bathroom ones that is, not Michelangelo-style Italian frescoes) and working in the office, I had a feeling something was going to go wrong. Stanley didn't seem quite right, and Leela said he hadn't been crying before his feeds, which he'd been doing like clockwork the last few days. The doc had a look at him; and squeezed a load of yellow sticky stuff out of his eyes. He gave Stanley a quick MOT and everything else seemed ok, until he then decided to stop breathing and needed resuscitating with 'the bag'.
He's obviously got some kind of eye infection, so the doc stuck a needle in his arm to take some bloods to test, to rule out anything more sinister. While all this was going on, his sister then thought she'd test out her monitors by doing what Stanley had just done. So, a couple of extra nurses were called over and bagged Willow too.
Although, on the whole, they are so much better than they were five weeks ago, it really hit us hard today. We should be used to seeing all this happening to our children, but it seems worse now in a way. This is because they are no longer just very small, helpless creatures; but they are now our son and daughter, who we've really grown to know and love in these past few weeks.
We needed some junk food on the way home, so we went for the only thing that would cut it today. And KFC did the trick, supplying us with its finest ever offering of a Zinger Tower meal and a portion of Hot Wings. Comfort eating at its best.
I called NICU this morning as usual. I can always tell how well the kids have behaved by the enthusiasm of the nurse on the other end. I could tell today's report was going to contain the word 'bag' at least once, and indeed it did. My heart sinks every time they tell me about Willow's latest episode. I think what makes it worse now is that we are always comparing her to Stanley, who is doing so much better. A few weeks ago, he was doing pretty much the same thing as Willow, but we didn't think as much of it because Willow was still fighting for her life on the ventilator.
When I got into NICU after a day of painting ceilings (bathroom ones that is, not Michelangelo-style Italian frescoes) and working in the office, I had a feeling something was going to go wrong. Stanley didn't seem quite right, and Leela said he hadn't been crying before his feeds, which he'd been doing like clockwork the last few days. The doc had a look at him; and squeezed a load of yellow sticky stuff out of his eyes. He gave Stanley a quick MOT and everything else seemed ok, until he then decided to stop breathing and needed resuscitating with 'the bag'.
He's obviously got some kind of eye infection, so the doc stuck a needle in his arm to take some bloods to test, to rule out anything more sinister. While all this was going on, his sister then thought she'd test out her monitors by doing what Stanley had just done. So, a couple of extra nurses were called over and bagged Willow too.
Although, on the whole, they are so much better than they were five weeks ago, it really hit us hard today. We should be used to seeing all this happening to our children, but it seems worse now in a way. This is because they are no longer just very small, helpless creatures; but they are now our son and daughter, who we've really grown to know and love in these past few weeks.
We needed some junk food on the way home, so we went for the only thing that would cut it today. And KFC did the trick, supplying us with its finest ever offering of a Zinger Tower meal and a portion of Hot Wings. Comfort eating at its best.
Tuesday 14 December 2010
Monday 13th December
After yesterday's day of ups and downs, the midnight report brought with it another down. Willow needing bagging again at about 10 o'clock, so they put her back on CPAP a couple of hours early. That was the third such incident she'd had in 24 hours, and it's just getting us down a bit at the moment.
This morning, the reports were slightly better - there had at least been no further bagging overnight. But another potential problem had cropped up, in that Willow is sometimes now having very low blood sugar levels. This could be a number of things - but most probably an ongoing effect from the steroids. Hopefully nothing more sinister than that anyway.
Throughout the day, things were getting better, and we left NICU feeling more positive than when we arrived. Stanley is now at a level where, if he were on his own, he'd have graduated to the nursery. However, as long as there are no more needy babies arriving, they'll keep Willow and Stanley together, which is nice. They might even get the double cot if they're lucky.
This morning, the reports were slightly better - there had at least been no further bagging overnight. But another potential problem had cropped up, in that Willow is sometimes now having very low blood sugar levels. This could be a number of things - but most probably an ongoing effect from the steroids. Hopefully nothing more sinister than that anyway.
Throughout the day, things were getting better, and we left NICU feeling more positive than when we arrived. Stanley is now at a level where, if he were on his own, he'd have graduated to the nursery. However, as long as there are no more needy babies arriving, they'll keep Willow and Stanley together, which is nice. They might even get the double cot if they're lucky.
Sunday 12 December 2010
Sunday 12th December
A mixed bag of a day today. Stanley was being rather good, now off CPAP for 4 days, and not even on nasal prongs for the majority of the time. He also had a very good go at breastfeeding, and is looking more and more alert when he's awake.
In the cot next door, Willow was not being as good. She had another bagging incident this morning, which is becoming more difficult to watch every time it happens. I had to turn away this time, just worrying that one day she just won't come out of it. The docs aren't totally sure why she keeps doing it, but think it's probably just because she's so tired. So she'll be back on CPAP for 6 hours twice a day again, to give her lungs a bit of a rest.
We're starting to think about what our Christmas Day and New Year celebrations are going to be like this year, in the confines of the Neo-natal Intensive Care Unit. It certainly won't be a festive period we're going to forget anyway, and will ensure that every year from now, we'll appreciate just being at home with our little family. But, at least we know that the BP garage is open continuously, so getting hold of coffee or a £3.29 Meal Deal is certainly not going to be a problem.
In the cot next door, Willow was not being as good. She had another bagging incident this morning, which is becoming more difficult to watch every time it happens. I had to turn away this time, just worrying that one day she just won't come out of it. The docs aren't totally sure why she keeps doing it, but think it's probably just because she's so tired. So she'll be back on CPAP for 6 hours twice a day again, to give her lungs a bit of a rest.
We're starting to think about what our Christmas Day and New Year celebrations are going to be like this year, in the confines of the Neo-natal Intensive Care Unit. It certainly won't be a festive period we're going to forget anyway, and will ensure that every year from now, we'll appreciate just being at home with our little family. But, at least we know that the BP garage is open continuously, so getting hold of coffee or a £3.29 Meal Deal is certainly not going to be a problem.
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