It might be Christmas Eve today, but it's a standard day for our little bundles of joy in the NICU.
This morning I went for a flu jab. I wouldn't normally, but thought I'd better this year; I don't want to risk anything hindering our babies' progress, or any others in the ward. The doctor's waiting room was typically grim; the 'computer says no' lady behind the desk, talking patronisingly to an elderly customer as usual. The room was filled with keen coughers and splutterers, dispersing their germs as far as possible. And to top it off, Cliff Richard's 'Mistletoe and Wine' was spewing out of the cheap, tinny speakers. To make matters worse, it wasn't even the original version - but a panpipe tribute. That is seriously not what you need to hear if you're feeling even slightly unwell. Thankfully, my wait was short - so I got injected with my protection against the influenzas of pigs and birds and whatever else, and left as quickly as possible.
I managed to fit in some quality working from home today, so I can relax a bit more with five continuous days off with the wife and children.
Willow and Stanley were being particularly amazing today. I fed Willow for the first time, and she handled it really well; hardly needing any additional oxygen to keep her going. After she was fed, she was wide awake for a few hours and being more alert than we've ever seen her. In fact, she's so much more lively that she seems like a different baby. Let's hope that this was the final corner she needed to turn.
It was so difficult to leave them tonight; they were both awake and lying in their double cot, checking each other out. It's like they've decided to put this show on for us especially for Christmas. We eventually left the hospital and went for our traditional Christmas Eve meal out, for the last time as just the two of us. We can't wait now for the New Year, when it will no longer by the two of us doing everything together, but the four of us.
Friday 24 December 2010
Thursday 23rd December
The morning report was a good one. The ratio of good versus bad reports is trending towards the former, although I always expect the worst when calling NICU each day. Anyway, it was good, with nothing to report overnight.
Today was a bit up and down generally, with Willow again needing resuscitating twice with the dreaded bag. I'm getting fed up of mentioning the bag and bagging, so hopefully I won't have to write that word too many more times. It looks like Willow's episodes are to do with a combination of things - including acid reflux and a build-up of gunk at the back of her mouth. So her dose of domperidone has been increased - this helps the gut digest the milk qiucker; plus she's still on the Gaviscon. She's going back on CPAP overnight to give her a bit of a rest too.
Other than that, the kids were good, and doing really well with their bottle-feeding. They were also weighed again today..... Stanley is now 6lbs 6oz, and Willow is 5lbs 9oz, which means they are growing beautifully. The bigger they get, the stronger they become - so every day they are giving themselves a better chance of pulling through this.
Stanley is developing his cry quite nicely; it's already loud enough to wake up the babies down the corridor in the post-natal ward. Willow's voice is still very croaky; the after-effects of the ventilator tube which was down her throat for two months. But I'm sure she'll grow out of that soon; and with her strong will, she will certainly be louder than her brother. Watch out, neighbours, you'll be in for a noisy 2011 with these two.
Today was a bit up and down generally, with Willow again needing resuscitating twice with the dreaded bag. I'm getting fed up of mentioning the bag and bagging, so hopefully I won't have to write that word too many more times. It looks like Willow's episodes are to do with a combination of things - including acid reflux and a build-up of gunk at the back of her mouth. So her dose of domperidone has been increased - this helps the gut digest the milk qiucker; plus she's still on the Gaviscon. She's going back on CPAP overnight to give her a bit of a rest too.
Other than that, the kids were good, and doing really well with their bottle-feeding. They were also weighed again today..... Stanley is now 6lbs 6oz, and Willow is 5lbs 9oz, which means they are growing beautifully. The bigger they get, the stronger they become - so every day they are giving themselves a better chance of pulling through this.
Stanley is developing his cry quite nicely; it's already loud enough to wake up the babies down the corridor in the post-natal ward. Willow's voice is still very croaky; the after-effects of the ventilator tube which was down her throat for two months. But I'm sure she'll grow out of that soon; and with her strong will, she will certainly be louder than her brother. Watch out, neighbours, you'll be in for a noisy 2011 with these two.
Wednesday 22 December 2010
Wednesday 22nd December
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.
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.
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.
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