The morning report was not incredibly positive today; but pretty much as expected. Willow had been off CPAP for two nights running, so it wasn't surprising that she needed a bagging early this morning. She's probably just getting tired; although my theory is that her bowels are causing her to have these episodes, as they always coincide with major movements in that area. But who am I to say - the extent of my medical qualifications is the biology element of my Science GCSE from 1994.
While at work I received a call from Leela, who was at the hospital first thing this morning. Willow and Stanley had both just had their eyes checked again for ROP - and they are both in the clear. They've even been officially discharged by the optometrist. This is amazing news, considering the facts - that 80% of premature babies have it to some extent, that it is mainly caused by large amounts of oxygen, and that Willow was having up to 90% oxygen at one point, and is still on a fair bit. The odds have been seriously against them the whole time, but these babies just seem to pull through each stage.
Next on today's agenda, the head scan. And another successful result! Although these scans don't mean a lot in terms of long-term brain development, it means at least that there is no indication of something definitely wrong at this point.
To top off today's excitement, they are now in a double cot; so the cuteness factor has hit a new high. It seems to have helped them out a bit as well; they've been quite happy all day, so seem to be enjoying each other's company.
The vibe of happiness was almost destroyed by a trip to Asda on the way home for some late Christmas shopping. Not sure what's been going on in Poole, but it seems that we've been in NICU for so long that people have started to evolve backwards. Nevertheless, our spirits were not dampened too much and we went home feeling optimistic once again.
Wednesday, 22 December 2010
Tuesday, 21 December 2010
Tuesday 21st December
Today brought with it some good bathing, lots of feeding, and a few transport problems. As for the babies; well, they had another good day.
We were very concerned about how Willow was going to cope overnight. She'd been on nasal prongs since about 6pm, since the new machine that was being trialled had malfunctioned slightly. Because she was doing so well, the docs decided to leave her on the prongs and not put her back on CPAP. So it was with great relief again this morning that we heard that there were still no further bagging episodes.
My transport issues began early this morning with an attempted run to catch the company bus to work. As I turned the corner onto the main road, I saw the gleaming white vehicle in the distance, showing me its red lights as it pulled away. So another Yellow Bus carried me to work, and of course I had to sit behind the most annoying woman in the world, coughing the whole time without putting her hand over her mouth.
After work, I discovered that the trains to Poole had been reduced to one per hour - probably due to the snow which had cleared yesterday - so I sprinted to catch the 17:30. After 20 minutes, the announcer mentioned that the train I was on would be arriving in London Waterloo a couple of hours later - but the last I heard, Poole wasn't on the way to London. So, off I scarpered and realised that my train was actually on the mystical Platform 4, and had left 20 minutes ago. So, another bus for me then. This time, I was sat behind a woman wearing a hat with badges pinned all over it, which annoyed me more than it probably should have.
Anyway, I eventually arrived in Poole and found my wife and children where they usually are - in and around cots 1 and 2. Willow and Stanley had both been very well behaved again today. Willow was still on her prongs, having managed over 24 hours off CPAP, and had expertly gulped down another full bottle. Stanley was also nice and stable, and he too had managed another bottle. They'd also had some quality bathtime with their mother.
They were both having some lovely episodes of being wide awake and alert, and having a look around. It's so heartwarming to experience these moments of joy among the rest of the storminess of life in the special care unit. While we are still very aware that our babies are by no means out of the woods just yet, our feelings of hopefulness are starting to increase with each day that passes.
We were very concerned about how Willow was going to cope overnight. She'd been on nasal prongs since about 6pm, since the new machine that was being trialled had malfunctioned slightly. Because she was doing so well, the docs decided to leave her on the prongs and not put her back on CPAP. So it was with great relief again this morning that we heard that there were still no further bagging episodes.
My transport issues began early this morning with an attempted run to catch the company bus to work. As I turned the corner onto the main road, I saw the gleaming white vehicle in the distance, showing me its red lights as it pulled away. So another Yellow Bus carried me to work, and of course I had to sit behind the most annoying woman in the world, coughing the whole time without putting her hand over her mouth.
After work, I discovered that the trains to Poole had been reduced to one per hour - probably due to the snow which had cleared yesterday - so I sprinted to catch the 17:30. After 20 minutes, the announcer mentioned that the train I was on would be arriving in London Waterloo a couple of hours later - but the last I heard, Poole wasn't on the way to London. So, off I scarpered and realised that my train was actually on the mystical Platform 4, and had left 20 minutes ago. So, another bus for me then. This time, I was sat behind a woman wearing a hat with badges pinned all over it, which annoyed me more than it probably should have.
Anyway, I eventually arrived in Poole and found my wife and children where they usually are - in and around cots 1 and 2. Willow and Stanley had both been very well behaved again today. Willow was still on her prongs, having managed over 24 hours off CPAP, and had expertly gulped down another full bottle. Stanley was also nice and stable, and he too had managed another bottle. They'd also had some quality bathtime with their mother.
They were both having some lovely episodes of being wide awake and alert, and having a look around. It's so heartwarming to experience these moments of joy among the rest of the storminess of life in the special care unit. While we are still very aware that our babies are by no means out of the woods just yet, our feelings of hopefulness are starting to increase with each day that passes.
Monday 20th December
We were welcomed this morning by some proper snow outside; which might look nice, but is more of a hindrance than anything else. At least our babies are safe inside the warmth of NICU; their lungs probably woudn't appreciate the icy cold weather in their condition.
Another good start to the day today; there were no reports of any upsets overnight, and Willow was coping well on the new machine.
They've both been weighed again - Willow is now 5lbs 4oz, and Stanley is 5lbs 14oz. So they're almost normal weights for nearly-full term twins. All that milk has done them a lot of good. The nurses are extremely impressed with how Leela has managed to keep expressing for three months, under such severe emotional strain, and produce enough to feed both of them. It's by far the best thing they can have, and is probably a big factor in how well they are doing right now. Despite the traumatic start they've had in life, at least we are now able to do everything we can from this point on, to ensure nothing else is compromised - and this is a very good start down that road.
Other uplifting news came in the form of Stanley having his first successful bottle feed. He gulped down a full 60ml - albeit sometimes forgetting that he also has to breathe while he's sucking and swallowing. With Willow also managing another bottle, this is great news in terms of their development. Our main worry now is when they're going to reach all their normal milestones, so this is one of the first major boxes ticked; another positive step in the right direction.
Another good start to the day today; there were no reports of any upsets overnight, and Willow was coping well on the new machine.
They've both been weighed again - Willow is now 5lbs 4oz, and Stanley is 5lbs 14oz. So they're almost normal weights for nearly-full term twins. All that milk has done them a lot of good. The nurses are extremely impressed with how Leela has managed to keep expressing for three months, under such severe emotional strain, and produce enough to feed both of them. It's by far the best thing they can have, and is probably a big factor in how well they are doing right now. Despite the traumatic start they've had in life, at least we are now able to do everything we can from this point on, to ensure nothing else is compromised - and this is a very good start down that road.
Other uplifting news came in the form of Stanley having his first successful bottle feed. He gulped down a full 60ml - albeit sometimes forgetting that he also has to breathe while he's sucking and swallowing. With Willow also managing another bottle, this is great news in terms of their development. Our main worry now is when they're going to reach all their normal milestones, so this is one of the first major boxes ticked; another positive step in the right direction.
Monday, 20 December 2010
Sunday 19th December
Not a bad Sunday really. It started well, with another pleasing overnight report. Only Stanley was playing up slightly, with his saturation fluctuation. Willow was pretty stable all the way through.
There was a major breakthrough today in the cot by the window. We decided to give Willow a go with feeding breast milk from the bottle. It's been a bit of a struggle trying directly from source, with both babies dropping their sats, stopping breathing and changing a navy blue colour during every attempt. Ideally, of course, Leela would be happily wandering around with a baby on each breast, feeding merrily away. But ideally, the babies wouldn't have been born at 26 weeks, without any ante-natal steroids, and been ventilated for two months. If we go down the purely breast-feeding route, it will be at least March by the time we're out of NICU, and that's not going to be good for anyone. They'll still be getting breast milk, just out of a bottle instead. By the time we get out of here they'll probably be on solids anyway.
So, Willow gulped down 40 ml in about two minutes on attempt number one. It was another one of those rare, precious moments where Leela really felt like a mother; being able to feed her like that while she was gazing up at her, followed by her first burping session. She hasn't quite got the Senior burp nailed just yet; but there's definitely a few people around who could give her some pointers, especially at this time of year.
I tried feeding Stanley with a bottle a bit later on, but he wasn't having any of it. He was concentrating too much on his Sunday afternoon snooze, so we'll try that again tomorrow.
Another big moment for Willow today was that she was the first baby in Poole to try a different type of ventilation. Rather than CPAP, which she was on when resting her lungs while not on the nasal prongs, she will now be using high-flow nasal cannula. This is used in other hospitals around the country and they are trialling it here. It does the same job as CPAP - maintaining a continuous positive airflow to the lungs - but without the nasty mask squashing her face. Hopefully she'll get on with this a bit better.
So, we're into the last week before Christmas, and we've never felt so un-Christmassy before. Every day will still be the same as the last, no matter what else is going on outside. But at least the days are slowly becoming easier, and the light at the end of the tunnel is growing brighter.
There was a major breakthrough today in the cot by the window. We decided to give Willow a go with feeding breast milk from the bottle. It's been a bit of a struggle trying directly from source, with both babies dropping their sats, stopping breathing and changing a navy blue colour during every attempt. Ideally, of course, Leela would be happily wandering around with a baby on each breast, feeding merrily away. But ideally, the babies wouldn't have been born at 26 weeks, without any ante-natal steroids, and been ventilated for two months. If we go down the purely breast-feeding route, it will be at least March by the time we're out of NICU, and that's not going to be good for anyone. They'll still be getting breast milk, just out of a bottle instead. By the time we get out of here they'll probably be on solids anyway.
So, Willow gulped down 40 ml in about two minutes on attempt number one. It was another one of those rare, precious moments where Leela really felt like a mother; being able to feed her like that while she was gazing up at her, followed by her first burping session. She hasn't quite got the Senior burp nailed just yet; but there's definitely a few people around who could give her some pointers, especially at this time of year.
I tried feeding Stanley with a bottle a bit later on, but he wasn't having any of it. He was concentrating too much on his Sunday afternoon snooze, so we'll try that again tomorrow.
Another big moment for Willow today was that she was the first baby in Poole to try a different type of ventilation. Rather than CPAP, which she was on when resting her lungs while not on the nasal prongs, she will now be using high-flow nasal cannula. This is used in other hospitals around the country and they are trialling it here. It does the same job as CPAP - maintaining a continuous positive airflow to the lungs - but without the nasty mask squashing her face. Hopefully she'll get on with this a bit better.
So, we're into the last week before Christmas, and we've never felt so un-Christmassy before. Every day will still be the same as the last, no matter what else is going on outside. But at least the days are slowly becoming easier, and the light at the end of the tunnel is growing brighter.
Saturday, 18 December 2010
Saturday 18th December
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.
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.
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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