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.
Saturday, 11 December 2010
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.
Saturday, 4 December 2010
Friday 3rd December
Today's morning call reported that Willow had another incident in the early hours of this morning. She needed resuscitating again with the dreaded 'bag'. There doesn't seem to be any real explanation for her doing this other than her still being premature. Of course, we are used to a lot worse than one incident per night - just a few weeks ago she was needing that treatment as much as hourly. That doesn't make it any easier now though - if anything it's worse, as it seems to be the main thing which is holding her back.
While I was at work I got a call from the kids via Leela, and she told me that not only had Willow had another bagging incident, but Stanley had one as well! After a few days of moving forward, something always happens that punches you in the head to remind you what is actually happening to your family.
I learnt something new today on the way to the hospital. Bournemouth station apparently has a 'Platform 4', which I'd never noticed before - probably because it's about six miles towards the Westcountry. There wasn't much point in even getting on the train, because by the time I reached this mythical 4th platform, I'd already walked to Poole.
Anyway, when I finally got to the hospital, the babies were nice and stable, and looking more adorable than ever. Also, they got weighed again and have put on a good amount of chubbiness - Willow is now 3lbs 15oz, and Stanley is 4lbs 7oz. So, our son and daughter definitely helped me get over my railway concerns. And the delicious Godfather kebab on the way home definitely helped us get over our hunger concerns.
While I was at work I got a call from the kids via Leela, and she told me that not only had Willow had another bagging incident, but Stanley had one as well! After a few days of moving forward, something always happens that punches you in the head to remind you what is actually happening to your family.
I learnt something new today on the way to the hospital. Bournemouth station apparently has a 'Platform 4', which I'd never noticed before - probably because it's about six miles towards the Westcountry. There wasn't much point in even getting on the train, because by the time I reached this mythical 4th platform, I'd already walked to Poole.
Anyway, when I finally got to the hospital, the babies were nice and stable, and looking more adorable than ever. Also, they got weighed again and have put on a good amount of chubbiness - Willow is now 3lbs 15oz, and Stanley is 4lbs 7oz. So, our son and daughter definitely helped me get over my railway concerns. And the delicious Godfather kebab on the way home definitely helped us get over our hunger concerns.
Thursday, 2 December 2010
Wednesday 1st to Thursday 2nd December
Been a bit busy again the last couple of days. Work tends to get in the way every now and then, and I can't really use snow as an excuse as I can work from home.
The children have mostly been well behaved this week. Willow does tend to have a profound 'moment' once a day, where her heart rate drops, her oxygen saturation levels go right down, and she needs 'bagging'. Athough we're used to it now, it's still horrible to watch and we wonder when it'll stop happening. On the whole though, she is looking more like a little chunky baby every day, and generally improving.
They both had their eyes checked for ROP again yesterday. Stanley is still completely clear, but Willow has grade 1 retinopathy. This isn't surprising, as the vast majority of premature babies have it to some degree, and Willow in particular has been on stupid amounts of oxygen, which increases the chances. We're not too worried just yet, as it doesn't always develop further and they're being checked every week.
The boy Stanley is still a few steps ahead of Willow; he's now on 3 hourly feeds and seems to be tolerating them. And today when he was off CPAP, he was on zero oxygen - so basically just breathing air with no help at all. It's only taken ten weeks to get there, but we're getting there!
The original expected release date of New Years Day is looking less and less likely, but we're hoping it will be some time in January.
We used to wonder when the babies would come home compared to other world events. Back in August we were hoping that the babies would stay in the womb for longer than the Chilean miners were trapped underground. That didn't happen.
Then, we wondered if the home date would be before the X Factor finale, or The Apprentice 'You're Hired'. That's not going to happen either.
Surely though, we are not going to have to wait until England get to host the World Cup...
The children have mostly been well behaved this week. Willow does tend to have a profound 'moment' once a day, where her heart rate drops, her oxygen saturation levels go right down, and she needs 'bagging'. Athough we're used to it now, it's still horrible to watch and we wonder when it'll stop happening. On the whole though, she is looking more like a little chunky baby every day, and generally improving.
They both had their eyes checked for ROP again yesterday. Stanley is still completely clear, but Willow has grade 1 retinopathy. This isn't surprising, as the vast majority of premature babies have it to some degree, and Willow in particular has been on stupid amounts of oxygen, which increases the chances. We're not too worried just yet, as it doesn't always develop further and they're being checked every week.
The boy Stanley is still a few steps ahead of Willow; he's now on 3 hourly feeds and seems to be tolerating them. And today when he was off CPAP, he was on zero oxygen - so basically just breathing air with no help at all. It's only taken ten weeks to get there, but we're getting there!
The original expected release date of New Years Day is looking less and less likely, but we're hoping it will be some time in January.
We used to wonder when the babies would come home compared to other world events. Back in August we were hoping that the babies would stay in the womb for longer than the Chilean miners were trapped underground. That didn't happen.
Then, we wondered if the home date would be before the X Factor finale, or The Apprentice 'You're Hired'. That's not going to happen either.
Surely though, we are not going to have to wait until England get to host the World Cup...
Tuesday, 30 November 2010
Monday 29th to Tuesday 30th November
A very busy couple of days.
For me: work, hospital, eat, sleep. For Leela: express, hospital, express, hospital, express, eat, express, sleep (briefly).
It's all pretty exhausting; it'll just ne nice when we can do the above, without the 'hospital' bit in the middle.
That bit though, has been almost enjoyable for the last couple of days. Willow and Stanley are both growing bigger and stronger; the boy still slightly ahead with his breathing function but his big (little) sister right behind him.
I wasn't there for the doctor's round this morning, but it sounds like it was a good one. They started with Willow as usual, as she is in bed #1. The doc had a look at her and said, 'So, here's Willow and she looks...... well, she looks amazing really.' He had a tear in his eye as he looked at Leela with tears in her eyes. All the staff here are so good, they really care about these little babies and they want, as much as anyone, to see them do well. We'll never complain about the NHS again, that's for sure. Apparently it costs £1000 per day to keep one baby in intensive care - so that's our taxes well spent anyway.
Another milestone was reached today - Stanley managed to drink some milk straight from the source. Leela's been trying for a few days with both of them and today he really went for it. It won't be long til Willow's doing the same - she was trying to find some milk in my chest this evening. I think she'll have some trouble finding any in there.
We decided to not go to a take-away or restaurant for dinner tonight, opting to see what we had in the fridge instead. Well, that was a mistake. All that was left was a tub of spinach and ricotta sauce, and a packet of tortellini. Trouble is, it was spinach and ricotta flavoured tortellini. It was alright if you like warm, spinach and ricotta flavoured lumpy milkshake.
So..... where shall we go for dinner tomorrow night then?
For me: work, hospital, eat, sleep. For Leela: express, hospital, express, hospital, express, eat, express, sleep (briefly).
It's all pretty exhausting; it'll just ne nice when we can do the above, without the 'hospital' bit in the middle.
That bit though, has been almost enjoyable for the last couple of days. Willow and Stanley are both growing bigger and stronger; the boy still slightly ahead with his breathing function but his big (little) sister right behind him.
I wasn't there for the doctor's round this morning, but it sounds like it was a good one. They started with Willow as usual, as she is in bed #1. The doc had a look at her and said, 'So, here's Willow and she looks...... well, she looks amazing really.' He had a tear in his eye as he looked at Leela with tears in her eyes. All the staff here are so good, they really care about these little babies and they want, as much as anyone, to see them do well. We'll never complain about the NHS again, that's for sure. Apparently it costs £1000 per day to keep one baby in intensive care - so that's our taxes well spent anyway.
Another milestone was reached today - Stanley managed to drink some milk straight from the source. Leela's been trying for a few days with both of them and today he really went for it. It won't be long til Willow's doing the same - she was trying to find some milk in my chest this evening. I think she'll have some trouble finding any in there.
We decided to not go to a take-away or restaurant for dinner tonight, opting to see what we had in the fridge instead. Well, that was a mistake. All that was left was a tub of spinach and ricotta sauce, and a packet of tortellini. Trouble is, it was spinach and ricotta flavoured tortellini. It was alright if you like warm, spinach and ricotta flavoured lumpy milkshake.
So..... where shall we go for dinner tomorrow night then?
Sunday, 28 November 2010
Sunday 28th November
Another long day today. I started painting the new skirting board at 6am while Leela was doing her usual early morning express. We're having a new carpet fitted in the lounge tomorrow, which should hopefully help contain the icy blasts which currently shoot up through the floorboards. Don't think Willow and Stanley would appreciate those drafts when they come home, so we'd better make it nice and snug.
Talked to the doc this morning during the daily round. He actually said the words 'Not much sign of any respiratory distress' while listening to Willow's chest. This is incredible, considering that this time three weeks ago, we had a conversation with the doc about how 'crummy' her lungs were, as he showed us an x ray showing that they were completely cloudy and one was collapsed. Back then, we seriously thought that she might not even survive. Now, she's very nearly on a par with her little (big) brother. Just shows how quickly things can change in this place.
It shows how much progress we've made that the doctors no longer have grave conversations with us every morning, where they used to list the babies' current problems, what the risks are, what the worst case scenario was etc etc. The 'current problems' list on their daily sheet is now shorter than the 'resolved problems' list. It now only contains a few items like: Pre-term, chronic lung disease, respiratory distress syndrome, PDA, ventricular hypertrophy, conjugated hyperbilirubinemia, edematous, cysts in the brain ventricles, all that kind of standard stuff.
We're really appreciating every minute we're spending with the babies now. It could've been so much worse. I was reading on the news the other day about two 27 week old twins who both died while in hospital a couple of weeks after being born - I can only imagine what their parents are going through. It just shows, whatever crap we think we're going through at the moment, there's always someone a lot worse off.
Talked to the doc this morning during the daily round. He actually said the words 'Not much sign of any respiratory distress' while listening to Willow's chest. This is incredible, considering that this time three weeks ago, we had a conversation with the doc about how 'crummy' her lungs were, as he showed us an x ray showing that they were completely cloudy and one was collapsed. Back then, we seriously thought that she might not even survive. Now, she's very nearly on a par with her little (big) brother. Just shows how quickly things can change in this place.
It shows how much progress we've made that the doctors no longer have grave conversations with us every morning, where they used to list the babies' current problems, what the risks are, what the worst case scenario was etc etc. The 'current problems' list on their daily sheet is now shorter than the 'resolved problems' list. It now only contains a few items like: Pre-term, chronic lung disease, respiratory distress syndrome, PDA, ventricular hypertrophy, conjugated hyperbilirubinemia, edematous, cysts in the brain ventricles, all that kind of standard stuff.
We're really appreciating every minute we're spending with the babies now. It could've been so much worse. I was reading on the news the other day about two 27 week old twins who both died while in hospital a couple of weeks after being born - I can only imagine what their parents are going through. It just shows, whatever crap we think we're going through at the moment, there's always someone a lot worse off.
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