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.
Saturday 13 November 2010
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.
Wednesday 10 November 2010
Wednesday 10th November
Last night's midnight call to NICU revealed that Stanley had a bit of an episode. He decided to stop breathing for a few minutes and needed what is so joyfully known as 'bagging'. Not the best of thoughts to be going to bed with, but he had been on just nasal prongs for 14 hours, so he was probably just tired. We're used to seeing our kids stopping breathing and starting to turn blue, so we weren't all that worried.
The morning report was much better - they'd both had settled, stable nights, and Willow's oxygen requirements were still not rising much.
After a day's work in the office, for some reason I made the terrible decision of catching a bus to Poole. What a delightful experience that was. I had to wait 15 minutes for a bus that comes every 7 minutes, and then when I got on it, had the obligatory couple of loud alcoholics sitting behind me, breathing down my neck. I might just get the train next time. First class.
Anyway, today's hospital experience was generally positive again. Stanley was wearing a lovely stripey jumper, and spent a long time out of his cot. Willow's respiratory rate, which the ventilator supplies, had gone down from 65 to 50 breaths per minute. This means she is doing more of her own breaths, so she appears to be going in the right direction. If she keeps up the good work, the plan is to give her surfactant to try and help her lungs. We'll see how she gets on overnight and tomorrow.
The morning report was much better - they'd both had settled, stable nights, and Willow's oxygen requirements were still not rising much.
After a day's work in the office, for some reason I made the terrible decision of catching a bus to Poole. What a delightful experience that was. I had to wait 15 minutes for a bus that comes every 7 minutes, and then when I got on it, had the obligatory couple of loud alcoholics sitting behind me, breathing down my neck. I might just get the train next time. First class.
Anyway, today's hospital experience was generally positive again. Stanley was wearing a lovely stripey jumper, and spent a long time out of his cot. Willow's respiratory rate, which the ventilator supplies, had gone down from 65 to 50 breaths per minute. This means she is doing more of her own breaths, so she appears to be going in the right direction. If she keeps up the good work, the plan is to give her surfactant to try and help her lungs. We'll see how she gets on overnight and tomorrow.
Tuesday 9 November 2010
Tuesday 9th November
Struggled to get out of bed this morning, after having a couple of hours of half-sleep. At least I don't have to get up every three hours to express milk though, like my amazing wife (I don't think it would work if I tried it, anyway). The rest of the time is taken up with nightmares about what could happen. And then full consciousness arrives and the real nightmare starts again.
The morning report said Willow was still on 70-80% oxygen, and Stanley was still Stanleying about. So - a standard start to the day, and one we have come to expect.
After fitting in a few hours of working from home, we went to the hospital. Willow's oxygen requirement was starting to go down, which looked promising. But then, it was down yesterday, and soon shot back up. Stanley looked extremely cute with a big woollen cardigan and a proper baby-grow. He's looking just like a real baby now, only in miniature. Saying that; he is getting less miniature, at a whopping 3lbs 4oz.
Today in general was more of an 'up' day - Willow's oxygen requirements did stay down in the 60s, and she was looking more settled. She's also back on 1ml of milk an hour after having her feeds stopped due to multiple issues going on. So, all we need is for these positive vibes to keep floating about NICU, kill this infection and get those lungs working. She's still wriggling about like crazy despite being on a vast amount of morphine, so she's obviously got her mother's fighting spirit. With that, she should be just fine.
On the way home we popped in for a quick visit to see Nanna and Grandad, who had with them a great aunt and two great uncles, and who force-fed us lasagne, beer and too much dessert. And to think we just going to have Weetabix for dinner tonight.
The morning report said Willow was still on 70-80% oxygen, and Stanley was still Stanleying about. So - a standard start to the day, and one we have come to expect.
After fitting in a few hours of working from home, we went to the hospital. Willow's oxygen requirement was starting to go down, which looked promising. But then, it was down yesterday, and soon shot back up. Stanley looked extremely cute with a big woollen cardigan and a proper baby-grow. He's looking just like a real baby now, only in miniature. Saying that; he is getting less miniature, at a whopping 3lbs 4oz.
Today in general was more of an 'up' day - Willow's oxygen requirements did stay down in the 60s, and she was looking more settled. She's also back on 1ml of milk an hour after having her feeds stopped due to multiple issues going on. So, all we need is for these positive vibes to keep floating about NICU, kill this infection and get those lungs working. She's still wriggling about like crazy despite being on a vast amount of morphine, so she's obviously got her mother's fighting spirit. With that, she should be just fine.
On the way home we popped in for a quick visit to see Nanna and Grandad, who had with them a great aunt and two great uncles, and who force-fed us lasagne, beer and too much dessert. And to think we just going to have Weetabix for dinner tonight.
Monday 8 November 2010
Monday 8th November
I can't believe it's already a week into November. We always said we wanted to make it at least to this month before giving birth. Well, here we are - 6 weeks and 3 days in.
Got up at 6.30 today and logged into work from home. Doing a bit of work is like having a break from the 24/7 emotional torture of having two babies in intensive care, so I don't mind really. The ups and downs faced by a major global investment bank pale in comparison to the trials and tribulations of the lives of our mostly helpless children, but I need to keep working now more than ever, for them.
Called NICU for the start of day status report - and it was reasonably positive. Stanley was busy having a look around and trying to climb out of the bottom of his incubator. Willow had a relatively good night and was settled, and her oxygen requirement was down to 56% at the time when I called. This sounded remarkably better than the 80-85% from last night, but we won't get too excited just yet.
We arrived at the hospital today to find Stanley's incubator had disappeared. He was now in a cot! I couldn't believe it; had to double check it was definitely our son in there. He was fast asleep for most of the time we were there, looking super-cosy on his heated water mattress, but he was quite alert for half an hour or so. We both spent that whole time just looking at him, and he was looking back at us with his big curious eyes, trying to take it all in. It was probably quite confusing for him having these two big people smiling and pointing at him like weirdos.
Willow was mostly comfortable, but her oxygen requirements had risen again. The antibiotics seem to be clearing the infection, and she'll be given another blood transfusion to increase her red blood cell count; this should all help her breathing. It's so hard watching her though - there really is nothing we can do to help, and at the moment she just needs to be left alone.
We had our usual short break, which consists of running to move the car so we don't get a ticket, followed by a trip to the BP garage for a coffee. No matter how clearly we ask for 'one americano and one cappuccino', they will always respond with - 'so, that was two lattes, right?'. One day we'll try asking, 'Seventeen machiatos, four frappe au laits and a bucket of chicken livers, please'. I guarantee they will reply with 'so, that was two lattes, right?'. Maybe we'll try that one tomorrow.
Got up at 6.30 today and logged into work from home. Doing a bit of work is like having a break from the 24/7 emotional torture of having two babies in intensive care, so I don't mind really. The ups and downs faced by a major global investment bank pale in comparison to the trials and tribulations of the lives of our mostly helpless children, but I need to keep working now more than ever, for them.
Called NICU for the start of day status report - and it was reasonably positive. Stanley was busy having a look around and trying to climb out of the bottom of his incubator. Willow had a relatively good night and was settled, and her oxygen requirement was down to 56% at the time when I called. This sounded remarkably better than the 80-85% from last night, but we won't get too excited just yet.
We arrived at the hospital today to find Stanley's incubator had disappeared. He was now in a cot! I couldn't believe it; had to double check it was definitely our son in there. He was fast asleep for most of the time we were there, looking super-cosy on his heated water mattress, but he was quite alert for half an hour or so. We both spent that whole time just looking at him, and he was looking back at us with his big curious eyes, trying to take it all in. It was probably quite confusing for him having these two big people smiling and pointing at him like weirdos.
Willow was mostly comfortable, but her oxygen requirements had risen again. The antibiotics seem to be clearing the infection, and she'll be given another blood transfusion to increase her red blood cell count; this should all help her breathing. It's so hard watching her though - there really is nothing we can do to help, and at the moment she just needs to be left alone.
We had our usual short break, which consists of running to move the car so we don't get a ticket, followed by a trip to the BP garage for a coffee. No matter how clearly we ask for 'one americano and one cappuccino', they will always respond with - 'so, that was two lattes, right?'. One day we'll try asking, 'Seventeen machiatos, four frappe au laits and a bucket of chicken livers, please'. I guarantee they will reply with 'so, that was two lattes, right?'. Maybe we'll try that one tomorrow.
Sunday 7 November 2010
Sunday 7th November
Gone are the Sundays when all we had to worry about was how bad our hangovers were. And the only decisions we had to ponder were which take-away to have for dinner and how many hours of The Wire to watch.
The morning call to NICU revealed that Willow's oxygen requirements had gone up to 70-80% overnight. Being that normal air is 21%, and she was only needing 40% a couple of days ago, this was not sounding good.
We talked to the doc, who filled us in on the latest. Willow has another infection, which is probably contributing to her less than satisfactory breathing ability. The docs have worked out a long list of things that they're going to try in order to help her lungs. These include the usual suspects - antibiotics, different types of ventilation, steroids. Hopefully the infection will be clear by the middle of the week and she can start on her second course of steroids to strengthen her little lungs.
We felt better after talking to the doc, as usual. They tell us pretty crappy things but at least we know exactly what is going on. It's not a hopeless situation, he said; but there are many risks involved. All we can do is hope for the best.
There was a lot more hope in the incubator next door, where Stanley was being Stanley. He's now off his CPAP machine for 12 hours a day, so just on nasal prongs for that time. That means he's only getting extra oxygen to help him, but no pressure to keep his lungs open. Seeing how well he is doing compared to his sister illustrates just how different two babies who were given exactly the same start in life can be.
We just can't wait for Willow to get to this stage - so we can actually see what she looks like without all the tubes and other stuff all over her face, and to be able to hold her like any normal person can hold their baby. It's just difficult keeping positive, without your mind collapsing into disarray every time you stop and think about it for too long.
On the plus side, at least we don't have to go to Southampton every day. I won't complain the next time we have to go to Ikea, that's for sure. In fact, once the babies are home I don't think I'll complain about anything again. Well, actually, I won't hold myself to that.
The morning call to NICU revealed that Willow's oxygen requirements had gone up to 70-80% overnight. Being that normal air is 21%, and she was only needing 40% a couple of days ago, this was not sounding good.
We talked to the doc, who filled us in on the latest. Willow has another infection, which is probably contributing to her less than satisfactory breathing ability. The docs have worked out a long list of things that they're going to try in order to help her lungs. These include the usual suspects - antibiotics, different types of ventilation, steroids. Hopefully the infection will be clear by the middle of the week and she can start on her second course of steroids to strengthen her little lungs.
We felt better after talking to the doc, as usual. They tell us pretty crappy things but at least we know exactly what is going on. It's not a hopeless situation, he said; but there are many risks involved. All we can do is hope for the best.
There was a lot more hope in the incubator next door, where Stanley was being Stanley. He's now off his CPAP machine for 12 hours a day, so just on nasal prongs for that time. That means he's only getting extra oxygen to help him, but no pressure to keep his lungs open. Seeing how well he is doing compared to his sister illustrates just how different two babies who were given exactly the same start in life can be.
We just can't wait for Willow to get to this stage - so we can actually see what she looks like without all the tubes and other stuff all over her face, and to be able to hold her like any normal person can hold their baby. It's just difficult keeping positive, without your mind collapsing into disarray every time you stop and think about it for too long.
On the plus side, at least we don't have to go to Southampton every day. I won't complain the next time we have to go to Ikea, that's for sure. In fact, once the babies are home I don't think I'll complain about anything again. Well, actually, I won't hold myself to that.
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