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.
Wednesday, 15 December 2010
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.
Saturday, 11 December 2010
Saturday 11th December
This week we've learnt a lot about bowel movements, and what effect they can have on small babies. Stanley is building up quite a reputation with the nursing staff for being rather good at this type of gut activity. I won't go into it in too much detail, but he does seem to forget about the rest of his vital organs, particularly his lungs, when he's concentrating on filling his nappy.
Today, both of our beautiful little babies were behaving very nicely. There's been no sign of a bag to rescue Willow for a few days now, and her reliance on additional oxygen is dwindling very slowly in the right direction. She's now on nasal prongs for 7 hours twice a day, and coping well. Stanley has been on just his prongs for 3 days running now, and most of the time they are pretty much redundant with no oxygen coming out of them.
So, we certainly haven't made it home with the children before the X Factor final, which was one of our original (optimistic) target dates. I'm quite glad about that in a way; it's not something I'd want to expose them to at such an early age. They've endured so much already in NICU, I think watching a few minutes of that might just tip them over the edge.
Today, both of our beautiful little babies were behaving very nicely. There's been no sign of a bag to rescue Willow for a few days now, and her reliance on additional oxygen is dwindling very slowly in the right direction. She's now on nasal prongs for 7 hours twice a day, and coping well. Stanley has been on just his prongs for 3 days running now, and most of the time they are pretty much redundant with no oxygen coming out of them.
So, we certainly haven't made it home with the children before the X Factor final, which was one of our original (optimistic) target dates. I'm quite glad about that in a way; it's not something I'd want to expose them to at such an early age. They've endured so much already in NICU, I think watching a few minutes of that might just tip them over the edge.
Friday 10th December
Eleven weeks old today - three weeks until the official due date. We're definitely approaching the right end of this experience now.
Another positive day in NICU today. Stanley was weighed again, and is now 5lb 4oz; he's really piling on the ounces now. Both the kids had some really alert periods, which is so nice to see. But it does make it even more difficult to leave them when they're like that.
With Stanley being on pretty much no oxygen, and Willow still lagging quite a way behind, it looks like Stanley will end up going home before his sister. Not quite sure how we're going to deal with that, especially as the boy won't be allowed back in NICU after being exposed to the outside world. But we'll just wait and see what happens; Willow could suddenly 'turn the corner' and drop her O2 and CPAP requirements. She's shown us already that she has her mother's fighty stubbornness - we just need one more push.
Another positive day in NICU today. Stanley was weighed again, and is now 5lb 4oz; he's really piling on the ounces now. Both the kids had some really alert periods, which is so nice to see. But it does make it even more difficult to leave them when they're like that.
With Stanley being on pretty much no oxygen, and Willow still lagging quite a way behind, it looks like Stanley will end up going home before his sister. Not quite sure how we're going to deal with that, especially as the boy won't be allowed back in NICU after being exposed to the outside world. But we'll just wait and see what happens; Willow could suddenly 'turn the corner' and drop her O2 and CPAP requirements. She's shown us already that she has her mother's fighty stubbornness - we just need one more push.
Friday, 10 December 2010
Thursday 9th December
It was a good day today in the hospital. Willow had her first bath, which was a shared experience with her brother. It was slightly stressful - more for us than the babies - due to the fact that it was the first time both of them had been off their monitors completely. They both seemed to enjoy it though, and Willow was particularly alert for quite a while. Now that she is not using up all of her energy on breathing, she's starting to wake up a bit more.
Also, we had another first - we saw Stanley with no tubes in his face. He's breathing completely natural air for a lot of the time, just like a proper normal baby. We're feeling like we're getting closer to the nursery section now; hopefully we should at least be in there for Christmas dinner. It's not quite as noisy in that room, wth less babies - so should be slightly more pleasant.
Our bathroom is coming along nicely. The avocado suite is where it belongs - in the driveway behind the gate, under a pile of rubble. We are being very well looked after at the senior Senior household, where there are far too many Swiss biscuits to even contemplate starting a healthy eating regime until after Christmas.
Also, we had another first - we saw Stanley with no tubes in his face. He's breathing completely natural air for a lot of the time, just like a proper normal baby. We're feeling like we're getting closer to the nursery section now; hopefully we should at least be in there for Christmas dinner. It's not quite as noisy in that room, wth less babies - so should be slightly more pleasant.
Our bathroom is coming along nicely. The avocado suite is where it belongs - in the driveway behind the gate, under a pile of rubble. We are being very well looked after at the senior Senior household, where there are far too many Swiss biscuits to even contemplate starting a healthy eating regime until after Christmas.
Wednesday, 8 December 2010
Wednesday 8th December
Had a bit of an upside-down day today. We went in to see the babies before going to work for a change, after some stress-inducing bathroom design investigations.
We arrived at NICU to the news that the children had been well behaved overnight. Also, earlier this morning they had their eyes checked again for ROP. This procedure had in store for us good news and bad news. The good news is that Stanley is still in the clear, and Willow's grade 1 ROP has actually diminished slightly.
The bad news is that the eye-drops that are used to dilate the pupils can sometimes cause apnoea. Willow showed us that this is something that affects her more than we'd like. Just after I got her out of her cot, her heart rate and sats dropped to nearly nothing, she stopped breathing and I could see her face turning blue. So 'the bag' was used to get her breathing once more. We really don't want to see that happening again; it's becoming very tiresome.
More positive news comes in the shape of Willow now being on 3 hourly feeds like her brother. They've also both been weighed again - Willow is 4lbs 3oz and Stanley 4lbs 10oz. Keep up the good work, little fellas.
We arrived at NICU to the news that the children had been well behaved overnight. Also, earlier this morning they had their eyes checked again for ROP. This procedure had in store for us good news and bad news. The good news is that Stanley is still in the clear, and Willow's grade 1 ROP has actually diminished slightly.
The bad news is that the eye-drops that are used to dilate the pupils can sometimes cause apnoea. Willow showed us that this is something that affects her more than we'd like. Just after I got her out of her cot, her heart rate and sats dropped to nearly nothing, she stopped breathing and I could see her face turning blue. So 'the bag' was used to get her breathing once more. We really don't want to see that happening again; it's becoming very tiresome.
More positive news comes in the shape of Willow now being on 3 hourly feeds like her brother. They've also both been weighed again - Willow is 4lbs 3oz and Stanley 4lbs 10oz. Keep up the good work, little fellas.
Tuesday, 7 December 2010
Tuesday 7th December
Woke up in our temporary holiday home (at Willow and Stanley's Nanna and Grandad's house). We're staying here while our bathroom is being kitted out with a replacement for our much-loved avocado suite. (Thank you, Mr and Mrs S - next time we'll bring the grandchildren).
Didn't really want to be at work today - we have too much to do and two babies to see. But someone's got to, I suppose. I called NICU from the office for the morning status report, over a stale muffin and a cuppa. Probably didn't need the muffin after shoving a big bowl of Coco Pops down my neck before I left - but desperate times call for desperate measures. Anyway, there was good news all round. Both the kids had been sensible overnight, and had remembered to breathe the whole time.
Eventually I decided I'd had enough at work so made my way to Poole to see the family. Stanley's doing really well today - he's now on his nasal prongs for 13 hours a day, and for 3 of those hours today he was on no oxygen at all. Willow's coping well with 5 hours on prongs twice a day; her oxygen requirements coming down slowly. However, it looks like she will certainly be coming home on oxygen; so we'll have to get our house converted into an O2 machine and we won't get away from those bleeping monitors for a while yet. But we don't care, as long as those babies are home with us.
Didn't really want to be at work today - we have too much to do and two babies to see. But someone's got to, I suppose. I called NICU from the office for the morning status report, over a stale muffin and a cuppa. Probably didn't need the muffin after shoving a big bowl of Coco Pops down my neck before I left - but desperate times call for desperate measures. Anyway, there was good news all round. Both the kids had been sensible overnight, and had remembered to breathe the whole time.
Eventually I decided I'd had enough at work so made my way to Poole to see the family. Stanley's doing really well today - he's now on his nasal prongs for 13 hours a day, and for 3 of those hours today he was on no oxygen at all. Willow's coping well with 5 hours on prongs twice a day; her oxygen requirements coming down slowly. However, it looks like she will certainly be coming home on oxygen; so we'll have to get our house converted into an O2 machine and we won't get away from those bleeping monitors for a while yet. But we don't care, as long as those babies are home with us.
Monday 6th December
We're tired and fed up with it all today. 73 days of going to the hospital, 73 times of having to say goodnight to our children and going home without them. It's getting more difficult leaving them each day, now that they are growing bigger and showing their own little personalities.
Roll on 2011..
Roll on 2011..
Sunday, 5 December 2010
Saturday 4th December & Sunday 5th December
It's now over ten weeks that NICU has been our second home - we've probably travelled to Poole hospital and back about 100 times. Can't imagine what it will be like to not have to go there every day, but hopefully we'll find out soon.
Had a good day on Saturday, generally. Willow had another routine head scan, which revealed that the stuff that they saw last time had diminished slightly. I say 'stuff' because the docs don't even really know what it is, if indeed it's anything. A baby can have what seem to be major bleeds in their brain but still be completely unaffected in their development. Or they can have a normal brain scan and still have serious issues. So these scans don't really tell us much. But the good thing is there are no 'swiss cheese' areas, which would certainly indicate a problem.
There was a momentous moment happening around the Stanley Senior cot this afternoon. His first bath! He's now been on a normal mattress (ie not heated) for a few days, so has proved he's able to regulate his body temperature enough to be dipped into some water for a good wash. He appeared to love it, much to our surprise. He kept his sats up and was wide awake during the whole ordeal, even during the behind-the-ear washing. So his hair is now clean for the first time, and I reckon there's definitely some Daddy-style mousy blond in there, much to Mummy's disagreement.
The weekend was going really well until it took a small downward step on Sunday lunchtime. We came back from our field trip to B&Q and tile shops, where we did some important research on our impending bathroom re-fit, to the news that Willow had had another bagging incident while we were out. She'd done so well since Friday night - so we were gutted, again. It was nothing major but does put a downer on things.
After that though, they were both doing really well for the rest of the day. The trend is definitely still moving upward in the baby-health department, which is the most important thing right now.
Had a good day on Saturday, generally. Willow had another routine head scan, which revealed that the stuff that they saw last time had diminished slightly. I say 'stuff' because the docs don't even really know what it is, if indeed it's anything. A baby can have what seem to be major bleeds in their brain but still be completely unaffected in their development. Or they can have a normal brain scan and still have serious issues. So these scans don't really tell us much. But the good thing is there are no 'swiss cheese' areas, which would certainly indicate a problem.
There was a momentous moment happening around the Stanley Senior cot this afternoon. His first bath! He's now been on a normal mattress (ie not heated) for a few days, so has proved he's able to regulate his body temperature enough to be dipped into some water for a good wash. He appeared to love it, much to our surprise. He kept his sats up and was wide awake during the whole ordeal, even during the behind-the-ear washing. So his hair is now clean for the first time, and I reckon there's definitely some Daddy-style mousy blond in there, much to Mummy's disagreement.
The weekend was going really well until it took a small downward step on Sunday lunchtime. We came back from our field trip to B&Q and tile shops, where we did some important research on our impending bathroom re-fit, to the news that Willow had had another bagging incident while we were out. She'd done so well since Friday night - so we were gutted, again. It was nothing major but does put a downer on things.
After that though, they were both doing really well for the rest of the day. The trend is definitely still moving upward in the baby-health department, which is the most important thing right now.
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