It was a long day in NICU today, and we're both completely exhausted. The general theme, though, was one of positivity, including my first double trouble cuddle - probably the proudest moment of life so far.
Both Willow and Stanley were still being nicely stable most of the time, although the boy is still a bit on the chubby side. He's now started on diuretics to get rid of the excess fluids. Towards the end of the day, Willow's oxygen saturations started to waiver so her requirements were increasing. This may be the beginning of the steroid-weaning having an effect - which we were expecting anyway. We just can't cope with her going backwards too much.
Today, we had what was supposed to be a break in the town centre. I don't think that's even possible in Poole though - particularly in the Dolphin Centre, at the start of the Christmas shopping season. Isn't this what the internet was invented for - to not have to go to shops anymore? We only wanted to go somewhere for a quiet sandwich. So, for tomorrow's lunch then, it looks like it's back to the BP garage for an incorrect coffee and a Kit Kat Chunky.
Saturday, 20 November 2010
Friday, 19 November 2010
Friday 19th November
Another week gone. Eight down, six to go (best case scenario).
Another few nappies gone, too. Stanley was up to his old tricks, playing up for Mummy and Daddy with his assortment of bowel antics. Just as I'd finished changing him and giving him a nice new nappy, I heard a noise that could only mean one thing - the Colman's Mustard factory had reopened its doors again, straight into a Pampers Micro. So he got another fresh one, and guess what happened? Nappy number three in as many minutes. I gave that one to Mummy to fix - I was worn out after all that.
We had a relatively nice time again in NICU today. Willow was being especially stable, and looking a lot less stressed than she had been - enjoying a good cuddle with Mummy. At the moment, we're just worrying what she will be like when she's finished her course of steroids at the weekend. The docs expect her to go back a few steps, but are very happy with how she's coped so far off the ventilator.
Stanley was looking slightly too chubby today. He's got a bit swollen all over, but still looks like a very cute baby. He's been on antibiotics and had his milk cut back by a few ml an hour, and seems to be improving.
So it's about time to watch some more Children in Need; this time on the telly, rather than our own. But actually, there's only so much of Susan Boyle and Pudsey we can watch - so we'll just donate some money and stick Jack Bauer on instead.
Another few nappies gone, too. Stanley was up to his old tricks, playing up for Mummy and Daddy with his assortment of bowel antics. Just as I'd finished changing him and giving him a nice new nappy, I heard a noise that could only mean one thing - the Colman's Mustard factory had reopened its doors again, straight into a Pampers Micro. So he got another fresh one, and guess what happened? Nappy number three in as many minutes. I gave that one to Mummy to fix - I was worn out after all that.
We had a relatively nice time again in NICU today. Willow was being especially stable, and looking a lot less stressed than she had been - enjoying a good cuddle with Mummy. At the moment, we're just worrying what she will be like when she's finished her course of steroids at the weekend. The docs expect her to go back a few steps, but are very happy with how she's coped so far off the ventilator.
Stanley was looking slightly too chubby today. He's got a bit swollen all over, but still looks like a very cute baby. He's been on antibiotics and had his milk cut back by a few ml an hour, and seems to be improving.
So it's about time to watch some more Children in Need; this time on the telly, rather than our own. But actually, there's only so much of Susan Boyle and Pudsey we can watch - so we'll just donate some money and stick Jack Bauer on instead.
Thursday, 18 November 2010
Thursday 18th November
Well, that was a better day. We're both a lot happier right now, and not only because we've just tried out the newly opened Chicken and Pizza Delite, replacing the old favourite, Chicken Delite, which hadn't changed since 1991. I'm pleased to say that the chicken still gives as much delight as it always has done.
But anyway, back to the babies.....
They were both a lot more settled today - Willow was a much less angry little girl, and Stanley wasn't having as many episodes. We had some quality family time, and all four of us were more relaxed than we have been in the last 55 days.
While I'm looking forward to our next visit to Chicken and Pizza Delite, perhaps to try out their half-price lunchtime specials, I'm a lot more excited about visiting the babies again tomorrow.
But anyway, back to the babies.....
They were both a lot more settled today - Willow was a much less angry little girl, and Stanley wasn't having as many episodes. We had some quality family time, and all four of us were more relaxed than we have been in the last 55 days.
While I'm looking forward to our next visit to Chicken and Pizza Delite, perhaps to try out their half-price lunchtime specials, I'm a lot more excited about visiting the babies again tomorrow.
Wednesday, 17 November 2010
Wednesday 17th November
That famous NICU roller-coaster had us crashing downwards again today, without anything really bad actually happening.
Yesterday was obviously a major high point of the journey so far. We'd reached such a big milestone, that we must have just relaxed a little too much subconsciously. The nervous emotion and adrenaline had been keeping us going for so long; then suddenly it kind of stopped, and it just dawned on us again where we are and what is actually happening.
It hasn't helped that Stanley was starting to have more bradycardias (stopping breathing, heart rate dropping etc) yesterday, so much so that he's gone back onto his CPAP machine overnight. He's probably just tired after five days off, or it could be a sign of a slight infection. He's been started on anti-biotics anyway, just in case. Oh, and he's got a few hernias as well, which will probably need an operation.
Our babies have come so far, but there is still such a long way to go. We both just feel completely drained again; which is a feeling we're getting used to, but it seems to be worse than ever right now. We don't really have a choice though, so just need to keep strong like Willow and Stanley are demonstrating so nicely.
Yesterday was obviously a major high point of the journey so far. We'd reached such a big milestone, that we must have just relaxed a little too much subconsciously. The nervous emotion and adrenaline had been keeping us going for so long; then suddenly it kind of stopped, and it just dawned on us again where we are and what is actually happening.
It hasn't helped that Stanley was starting to have more bradycardias (stopping breathing, heart rate dropping etc) yesterday, so much so that he's gone back onto his CPAP machine overnight. He's probably just tired after five days off, or it could be a sign of a slight infection. He's been started on anti-biotics anyway, just in case. Oh, and he's got a few hernias as well, which will probably need an operation.
Our babies have come so far, but there is still such a long way to go. We both just feel completely drained again; which is a feeling we're getting used to, but it seems to be worse than ever right now. We don't really have a choice though, so just need to keep strong like Willow and Stanley are demonstrating so nicely.
Tuesday, 16 November 2010
Tuesday 16th November
These good days just keep coming now. Makes me a bit nervous.
Went to work all day today - well, until about 4pm anyway. I opted for the train to Poole this time; because my thinking is, surely there are less germs to catch on the train than on the M2 bus from Boscombe. Plus, it was a mere 8 minutes late - there was only a spattering of leaves on the line by Winchester. Although, who knows what will happen to the delays when the sleet starts floating down in February. Hopefully we won't still have a second home in Poole by then, though.
Anyway, when I arrived at NICU, I could hardly believe my eyes. My wife was sitting in the comfy chair with not one, but two babies engaged in full cuddle mode. This was the moment when it really sunk in - that I actually had a whole family here. It was really happening.
Soon after I got there, I held Willow for a first proper cuddle. So, we parents were sitting next to each other, with one baby each. This is what Leela and I had been thinking about since April - albeit maybe in our own lounge, rather than a hospital ward with bleeps and lights and incubators for company.
Willow was still quite angry today - probably due to coming off high doses of morphine and being given caffeine and steroids. She can't cry properly, because of the tube that was stuck down her throat for seven weeks; but her voice will come back soon.
Now that they're both doing so well, it would be easy to start getting complacent. But, now that we've got past this stage, the next worry starts seeping in - which is, what effect all this will have on them over the next few years. There is no real way of knowing, but they've been through so much, and been exposed to so many different drugs and treatments and problems. We just have to hope that they'll carry on getting through it, like they've done so bravely up to this point.
So today was quite a momentous day - the day that all four of us were really together as a family for the first time. Here's hoping for many more of those days to come.
Went to work all day today - well, until about 4pm anyway. I opted for the train to Poole this time; because my thinking is, surely there are less germs to catch on the train than on the M2 bus from Boscombe. Plus, it was a mere 8 minutes late - there was only a spattering of leaves on the line by Winchester. Although, who knows what will happen to the delays when the sleet starts floating down in February. Hopefully we won't still have a second home in Poole by then, though.
Anyway, when I arrived at NICU, I could hardly believe my eyes. My wife was sitting in the comfy chair with not one, but two babies engaged in full cuddle mode. This was the moment when it really sunk in - that I actually had a whole family here. It was really happening.
Soon after I got there, I held Willow for a first proper cuddle. So, we parents were sitting next to each other, with one baby each. This is what Leela and I had been thinking about since April - albeit maybe in our own lounge, rather than a hospital ward with bleeps and lights and incubators for company.
Willow was still quite angry today - probably due to coming off high doses of morphine and being given caffeine and steroids. She can't cry properly, because of the tube that was stuck down her throat for seven weeks; but her voice will come back soon.
Now that they're both doing so well, it would be easy to start getting complacent. But, now that we've got past this stage, the next worry starts seeping in - which is, what effect all this will have on them over the next few years. There is no real way of knowing, but they've been through so much, and been exposed to so many different drugs and treatments and problems. We just have to hope that they'll carry on getting through it, like they've done so bravely up to this point.
So today was quite a momentous day - the day that all four of us were really together as a family for the first time. Here's hoping for many more of those days to come.
Monday, 15 November 2010
Monday 15th November
Wow - if only all morning status reports could be that good. Willow is doing really well, breathing normal air through her CPAP machine, just requiring a bit of extra pressure to keep her lungs open. Normal air is only 21% oxygen - so this is amazing considering this time last week, she was requiring anything up to 100%. She's been having really good blood gases - where they check the PH, carbon dioxide, oxygen levels etc - which means her heart and lungs are efficiently doing what they should be doing.
At this rate she'll be catching up with Stanley in no time, who is still getting along smoothly on his nasal prongs. He is having the odd episode, where he stops breathing for a couple of minutes and needs a bit of a push, but hopefully the blood transfusion he had last night should help that. These babies are still not quite capable of regenerating their own new blood just yet, so they need a bit of a boost occasionally.
This afternoon, while I was at work, Leela called me from the hospital. I knew it would only be very good news or very bad news.....
....... and it was very good news again! Amazing news, in fact. Willow was now breathing without the CPAP machine, needing just a bit of oxygen via nasal prongs. So it seems she has already almost caught up with her brother. She'll be back on the CPAP mask overnight, but this is unbelievable progress. Those steroids obviously did the trick.
More of the same to come, please, children!
At this rate she'll be catching up with Stanley in no time, who is still getting along smoothly on his nasal prongs. He is having the odd episode, where he stops breathing for a couple of minutes and needs a bit of a push, but hopefully the blood transfusion he had last night should help that. These babies are still not quite capable of regenerating their own new blood just yet, so they need a bit of a boost occasionally.
This afternoon, while I was at work, Leela called me from the hospital. I knew it would only be very good news or very bad news.....
....... and it was very good news again! Amazing news, in fact. Willow was now breathing without the CPAP machine, needing just a bit of oxygen via nasal prongs. So it seems she has already almost caught up with her brother. She'll be back on the CPAP mask overnight, but this is unbelievable progress. Those steroids obviously did the trick.
More of the same to come, please, children!
Sunday, 14 November 2010
Sunday 14th November
Well, what a difference seven days can make. This time last Sunday, all we could think about was worst case scenario. We just couldn't help but imagine that poor Willow was going to be stuck on that ventilator forever.
But, today has turned out to be a much better Sunday.
She's off the bloody ventilator!!!! Wahoooooooo!!!!!
She was improving all last night and today, coping really well as the docs weaned down the ventilation. I wasn't in NICU again for most of today due to my stupid bout of man flu, but according to Leela, the atmosphere in there was vibrant - everyone excited that Willow was doing so well and was finally going to be extubated.
So she's now on CPAP - which gives her a continuous flow of pressure with additional oxygen. She's actually bypassed another setting on the new machine, BiPAP, which would give her additional breaths if she needed it. So hopefully she won't need to fall back to that, but it's good to have that level of comfort.
My man flu gradually disappeared today so I managed to visit - just late enough to miss the big event; but at least I've seen the children again at last. It seems like an age, and I've definitely seen a difference in Stanley after only 3 days away. He's getting chubbier and cuter, and looks even more like a regular baby.
We're on a real high right now, but again, we are not going to get complacent. It's still a long road yet, but after today, we can almost picture that happy sunset on the horizon.
But, today has turned out to be a much better Sunday.
She's off the bloody ventilator!!!! Wahoooooooo!!!!!
She was improving all last night and today, coping really well as the docs weaned down the ventilation. I wasn't in NICU again for most of today due to my stupid bout of man flu, but according to Leela, the atmosphere in there was vibrant - everyone excited that Willow was doing so well and was finally going to be extubated.
So she's now on CPAP - which gives her a continuous flow of pressure with additional oxygen. She's actually bypassed another setting on the new machine, BiPAP, which would give her additional breaths if she needed it. So hopefully she won't need to fall back to that, but it's good to have that level of comfort.
My man flu gradually disappeared today so I managed to visit - just late enough to miss the big event; but at least I've seen the children again at last. It seems like an age, and I've definitely seen a difference in Stanley after only 3 days away. He's getting chubbier and cuter, and looks even more like a regular baby.
We're on a real high right now, but again, we are not going to get complacent. It's still a long road yet, but after today, we can almost picture that happy sunset on the horizon.
Saturday, 13 November 2010
Saturday 13th November
The morning report from NICU was one which left us feeling very positive. Willow had been very stable again, and her pressure requirements on the ventilator had come down from 28 to about 17. This figure really needs to be under 20 in order for her to be extubated, so she's still on the right track. The steroids are obviously doing their job, helped along by her strong will.
Stanley had lasted more than 24 hours off CPAP - so with only his nasal prongs giving him a bit of oxygen. This is brilliant progress - and the docs are very happy with him; amazed at how alert he is when he's awake.
Again, I couldn't go and see them today. I've definitely got some kind of man-flu, and don't want to risk spreading it around the NICU. So, while I've been trying to finish off the nursery, Leela's been giving me frequent updates from the hospital. The general theme is still one of positive progress - Willow's oxygen requirements have come down again to the lower 40s, and her bowels have well and truly opened, for the first time since re-starting her feeds. It's good to know that's all working properly.
This evening we might have to dig into a few episodes of 24: Season 8. There's nothing like a bit of Jack Bauer to pass time quickly.
So, today is one of those 'up' days on the roller-coaster - let's hope that maybe, we won't have to go down again too many more times.
Stanley had lasted more than 24 hours off CPAP - so with only his nasal prongs giving him a bit of oxygen. This is brilliant progress - and the docs are very happy with him; amazed at how alert he is when he's awake.
Again, I couldn't go and see them today. I've definitely got some kind of man-flu, and don't want to risk spreading it around the NICU. So, while I've been trying to finish off the nursery, Leela's been giving me frequent updates from the hospital. The general theme is still one of positive progress - Willow's oxygen requirements have come down again to the lower 40s, and her bowels have well and truly opened, for the first time since re-starting her feeds. It's good to know that's all working properly.
This evening we might have to dig into a few episodes of 24: Season 8. There's nothing like a bit of Jack Bauer to pass time quickly.
So, today is one of those 'up' days on the roller-coaster - let's hope that maybe, we won't have to go down again too many more times.
Friday, 12 November 2010
Friday 12th November
Willow and Stanley are 7 weeks old today. So we're officially half way to the full 40 weeks, when we would be aiming to take the babies home. We're keeping all our limbs and digits crossed that that might actually happen.
I think I've still got a cold coming, so don't want to go to the hospital again. I might just be a bit run down, but it's not worth the risk. It's just torture not being able to see the kids.
Anyway, it turns out that the surfactant didn't work; Willow is no better this morning than she was yesterday. It was a long shot anyway, but worth a try before going for the second course of steroids. So, she was started on the dexamethasone this morning .... and the initial result is that her oxygen requirement has gone down from 70ish% to 50ish%. So that's a good sign - it really needs to be under 50% before she gets extubated and taken off the ventilator. It's not just her oxygen requirements that need to be reduced, but also the pressure required to keep her lungs open. It normally takes two or three days to get to this point after starting the steroids, so this weekend is going to be a long one.
In the bed next door, Stanley is still thriving at the moment. He was off CPAP for 18 hours yesterday, and today they want to see if he can last a whole 24 hours on the nasal prongs. This is amazing that he's doing so well; but we are still not getting complacent about it - he's not out of the woods just yet.
They were both weighed today too. Willow is now an incredible 3lbs 9oz, but this is mostly due to her holding a lot of extra weight where she's retaining fluids. Stanley, on the other hand, is still 3lbs 4oz, so he hasn't changed since the last weigh-in ... but, in his case, he was retaining fluids last time, and has since been on diuretics to clear it down. So, a very inconclusive mass-checking session that was. Nothing's ever easy, is it?
In other news - my parking ticket, that was issued approximately ten minutes after Stanley was born, has been retracted after I explained to Poole council that moving the car wasn't my priority at that point. I was hoping for more of a fight actually; we could do with the £25 for being Woman's Own's real-life story of the week.
I think I've still got a cold coming, so don't want to go to the hospital again. I might just be a bit run down, but it's not worth the risk. It's just torture not being able to see the kids.
Anyway, it turns out that the surfactant didn't work; Willow is no better this morning than she was yesterday. It was a long shot anyway, but worth a try before going for the second course of steroids. So, she was started on the dexamethasone this morning .... and the initial result is that her oxygen requirement has gone down from 70ish% to 50ish%. So that's a good sign - it really needs to be under 50% before she gets extubated and taken off the ventilator. It's not just her oxygen requirements that need to be reduced, but also the pressure required to keep her lungs open. It normally takes two or three days to get to this point after starting the steroids, so this weekend is going to be a long one.
In the bed next door, Stanley is still thriving at the moment. He was off CPAP for 18 hours yesterday, and today they want to see if he can last a whole 24 hours on the nasal prongs. This is amazing that he's doing so well; but we are still not getting complacent about it - he's not out of the woods just yet.
They were both weighed today too. Willow is now an incredible 3lbs 9oz, but this is mostly due to her holding a lot of extra weight where she's retaining fluids. Stanley, on the other hand, is still 3lbs 4oz, so he hasn't changed since the last weigh-in ... but, in his case, he was retaining fluids last time, and has since been on diuretics to clear it down. So, a very inconclusive mass-checking session that was. Nothing's ever easy, is it?
In other news - my parking ticket, that was issued approximately ten minutes after Stanley was born, has been retracted after I explained to Poole council that moving the car wasn't my priority at that point. I was hoping for more of a fight actually; we could do with the £25 for being Woman's Own's real-life story of the week.
Thursday, 11 November 2010
Thursday 11th November
I've had a sore throat building since last night, and this morning feel like I'm getting a cold. This is horrible, as it means I can't go and see my babies today. I hope it doesn't develop, and just goes away.
Leela called from the hospital. Stanley was his usual self, but the docs think that Willow may now have a virus. If it is a virus, that might be good as at least we might know what's causing problems - but it means they can't start her on the treatment for her lungs. She really doesn't need a virus after all she's been through. We should find out pretty soon, when they test the 'snot sample'.
Meanwhile, trying to do some work while waiting for that result, and not being able to go to the hospital, is no good for me at all.
It's been a long day, but just got a call from Leela. Willow has not got a virus, wahoo! I am so bloody relieved. She's also been doing better this afternoon, and they are starting her on the surfactant.
(The science bit (thanks as usual, my friend wikipedia): Surfactant is surface-active lipoprotein complex (phospholipoprotein) formed by type II alveolar cells. Its main functions are 1) To increase pulmonary compliance. 2) To prevent atelectasis (collapse of the lung) at the end of expiration. 3)To facilitate recruitment of collapsed airways. Premature babies have a lack of this stuff in their lungs, as they shouldn't really be breathing until they're due to be out of the womb. Hence they generally have Infant Respiratory Distress Syndrome)
So, Willow is getting a couple of doses of this to see if it helps at all. If it doesn't, then she'll get a second course of steroids. The problem with steroids is that there is a risk of having an effect on brain development, so you have to weigh everything up. Right now, we just want our daughter to have a fighting chance at life. We know that she has the fight in her, she just needs that something extra to give her a chance.
The next couple of days are going to be crucial, as either the surfactant or the steroids will hopefully give her the boost she needs to take that tube out. So, as usual, it's a waiting game.
Leela called from the hospital. Stanley was his usual self, but the docs think that Willow may now have a virus. If it is a virus, that might be good as at least we might know what's causing problems - but it means they can't start her on the treatment for her lungs. She really doesn't need a virus after all she's been through. We should find out pretty soon, when they test the 'snot sample'.
Meanwhile, trying to do some work while waiting for that result, and not being able to go to the hospital, is no good for me at all.
It's been a long day, but just got a call from Leela. Willow has not got a virus, wahoo! I am so bloody relieved. She's also been doing better this afternoon, and they are starting her on the surfactant.
(The science bit (thanks as usual, my friend wikipedia): Surfactant is surface-active lipoprotein complex (phospholipoprotein) formed by type II alveolar cells. Its main functions are 1) To increase pulmonary compliance. 2) To prevent atelectasis (collapse of the lung) at the end of expiration. 3)To facilitate recruitment of collapsed airways. Premature babies have a lack of this stuff in their lungs, as they shouldn't really be breathing until they're due to be out of the womb. Hence they generally have Infant Respiratory Distress Syndrome)
So, Willow is getting a couple of doses of this to see if it helps at all. If it doesn't, then she'll get a second course of steroids. The problem with steroids is that there is a risk of having an effect on brain development, so you have to weigh everything up. Right now, we just want our daughter to have a fighting chance at life. We know that she has the fight in her, she just needs that something extra to give her a chance.
The next couple of days are going to be crucial, as either the surfactant or the steroids will hopefully give her the boost she needs to take that tube out. So, as usual, it's a waiting game.
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