I was quite happy to see some snow last night. It means winter has definitely arrived, which means that we're getting closer to our babies coming home.
Our house needs to be made warmer in preparation for that event, so I stayed at home doing some DIY with Grandad while Leela went in to NICU for the early shift. In the afternoon we both went back in to spend some quality time with the kids.
Willow and Stanley were both very well behaved today. Willow's really starting to fill out now, and she's becoming more alert. Her eyes are so big and beautiful, it melts our hearts every time she looks at us. Stanley's filling out his nappies like a professional; sometimes filling his cot as well, and occasionally even giving the floor-cleaners a bit of extra work to do.
Saturday 27 November 2010
Friday 26th November
Willow and Stanley Senior are nine weeks old today, so they're 35 weeks into the full 40. We're still optimistically aiming for the original due date, New Year's Day, for the homecoming; but it will most likely be after that. It will certainly be an NHS turkey sandwich for our Christmas dinner, washed down with a frappe-mocha-mericano-cino from the BP garage.
The kids have both been weighed this week, this time without any additional swelling in either of them. Willow is now a quite substantial 3lbs 5oz and Stanley is a rather humongous 4lbs 2oz.
They're both looking perfect in every way, and we enjoyed holding them again today - despite a number of 'special' moments that Willow was having. We were expecting a lot worse though this week - she has done amazingly well since stopping the dexamethasone.
The days are still slowly ticking by, in a very gradual upward direction. The dips and backward steps are becoming smaller, but we're still very aware that any infection or other ailment could put either of them in trouble again.
We're now just looking forward to tomorrow for another family weekend in our Poole holiday home.
The kids have both been weighed this week, this time without any additional swelling in either of them. Willow is now a quite substantial 3lbs 5oz and Stanley is a rather humongous 4lbs 2oz.
They're both looking perfect in every way, and we enjoyed holding them again today - despite a number of 'special' moments that Willow was having. We were expecting a lot worse though this week - she has done amazingly well since stopping the dexamethasone.
The days are still slowly ticking by, in a very gradual upward direction. The dips and backward steps are becoming smaller, but we're still very aware that any infection or other ailment could put either of them in trouble again.
We're now just looking forward to tomorrow for another family weekend in our Poole holiday home.
Thursday 25 November 2010
Thursday 25th November
NICU was almost pleasant today. The head-scan lady came and did the scans, and couldn't see what the doc was seeing last week in Willow's head - the dodgy 'areas of high density'. All she saw was some bi-lateral flaring. Apparently, bi-lateral flaring in the brain is a hell of a lot better than seeing proper bleeds or areas looking like Swiss cheese. So our growing fears were pretty much unfounded - there is nothing definite to worry about in the white or grey matter department just yet.
The doc was saying how well both the kids were doing, particularly Willow, considering all the crap that their little bodies have had to endure. I put this down to the amazing job Leela did of taking care of them for the six months they were in her womb. Absolutely nothing was done to compromise their situation in any way - and it's definitely paid off. (Plus also, I'm sure the genes on both sides might have helped a little bit.)
Stanley was looking even more like a proper baby again today, and Willow is starting to fill out as well. For the first time, it feels like we have a little boy and a little girl, rather than two poor babies in plastic boxes. They're definitely showing their personalities now, and we're starting to imagine our lives together as a family.
We started this next phase of life with a curry on the way home at the Gate of India. Bloody nice, actually.
The doc was saying how well both the kids were doing, particularly Willow, considering all the crap that their little bodies have had to endure. I put this down to the amazing job Leela did of taking care of them for the six months they were in her womb. Absolutely nothing was done to compromise their situation in any way - and it's definitely paid off. (Plus also, I'm sure the genes on both sides might have helped a little bit.)
Stanley was looking even more like a proper baby again today, and Willow is starting to fill out as well. For the first time, it feels like we have a little boy and a little girl, rather than two poor babies in plastic boxes. They're definitely showing their personalities now, and we're starting to imagine our lives together as a family.
We started this next phase of life with a curry on the way home at the Gate of India. Bloody nice, actually.
Wednesday 24 November 2010
Wednesday 24th November
Happy Birthday, children. Two months old today! Looking back at those 61 days, it's more like one very long day rolled into a blurry mess.
One of today's expected tests didn't happen; the head-scan won't be til tomorrow. So, another sleepless night tonight, worrying about what news that will bring. No news would be good. Just to know either way would be nice.
The other test, for ROP, was done first thing in the morning. And a good result! All four of our babies' eyes are still clear; no sign at all of this disease. One less thing to worry about - well, until the next check in a week's time.
Today was another one of those up-and-down days. Or more down-and-up, actually.
We were both feeling really negative about everything today. Not one thing in particular, just the accumulation of all the worries in our heads, especially those long-term questions which don't have any answers yet. Will our babies ever actually come home? Will they have brain damage? Will their eyesight be affected by all the oxygen they've been given? Are they going to be able to hear anything? Will Stanley's heart condition actually amount to anything? Will his PDA come back and need surgery? Will they have to go home on oxygen? Are they going to get any more infections? How long will it take for their lungs to fully recover?
After some therapeutic eye-leaking and a good chat on the way back to the hospital in the afternoon, things started looking up.
Willow and Stanley both came off their CPAP again and we had one each to cuddle for a few hours. This was the first time we'd really seen Willow being alert - her eyes were wide open. Seeing her like that really gives us hope that she's going to be alright. I had the same overwhelming feelings that I'd had a couple of weeks ago with Stanley - like I imagine the first time a normal parent would see their baby.
I'm really believing now that they're both going to come home. This year would be nice, please.
One of today's expected tests didn't happen; the head-scan won't be til tomorrow. So, another sleepless night tonight, worrying about what news that will bring. No news would be good. Just to know either way would be nice.
The other test, for ROP, was done first thing in the morning. And a good result! All four of our babies' eyes are still clear; no sign at all of this disease. One less thing to worry about - well, until the next check in a week's time.
Today was another one of those up-and-down days. Or more down-and-up, actually.
We were both feeling really negative about everything today. Not one thing in particular, just the accumulation of all the worries in our heads, especially those long-term questions which don't have any answers yet. Will our babies ever actually come home? Will they have brain damage? Will their eyesight be affected by all the oxygen they've been given? Are they going to be able to hear anything? Will Stanley's heart condition actually amount to anything? Will his PDA come back and need surgery? Will they have to go home on oxygen? Are they going to get any more infections? How long will it take for their lungs to fully recover?
After some therapeutic eye-leaking and a good chat on the way back to the hospital in the afternoon, things started looking up.
Willow and Stanley both came off their CPAP again and we had one each to cuddle for a few hours. This was the first time we'd really seen Willow being alert - her eyes were wide open. Seeing her like that really gives us hope that she's going to be alright. I had the same overwhelming feelings that I'd had a couple of weeks ago with Stanley - like I imagine the first time a normal parent would see their baby.
I'm really believing now that they're both going to come home. This year would be nice, please.
Tuesday 23 November 2010
Tuesday 23rd November
Another long day at work today, and straight to St Mary's to meet up with Leela and our little bundles of joy.
Today, they were quite well behaved children again; only a few little 'moments' and they're coping well off the CPAP. And still, no sign of Willow getting any worse.
Tomorrow is quite a big day. They're having their eyes checked again for what's called ROP (Retinopathy of Prematurity), which is basically 'disorganized growth of retinal blood vessels which may result in scarring and retinal detachment'. It's what Stevie Wonder had, to make him blind. (Thanks, Google - as usual, you make me more paranoid. Must stop Googling.) They've already had two checks for ROP though, and were both clear. So chances are, they will be okay. In the vast majority of cases it's mild anyway, and even if it's more severe, it can be fixed with a bit of laser surgery.
Also, tomorrow they're having head scans. This is another normal occurrence, but we're a bit more worried this time because Willow had some 'areas of high density' in the white matter of her brain last week. These may just be absolutely nothing, an imperfection with the ultra-sound image, or it could mean there is some bleeding. Naturally, us as parents are drawn towards the latter as our conclusion - but hopefully it's just nothing.
What is surprising to me, is that I haven't turned to the demon drink during this trying time. It could so easily be a way out; but in fact, I drink hardly anything now. You need a clear head in order to take it all in, to be able to talk things through with each other, and to be there for the babies.
And besides, spending a day in NICU with a raging hangover would be even worse than spending it in Dunelm Mill on a Sunday looking at curtains.
Today, they were quite well behaved children again; only a few little 'moments' and they're coping well off the CPAP. And still, no sign of Willow getting any worse.
Tomorrow is quite a big day. They're having their eyes checked again for what's called ROP (Retinopathy of Prematurity), which is basically 'disorganized growth of retinal blood vessels which may result in scarring and retinal detachment'. It's what Stevie Wonder had, to make him blind. (Thanks, Google - as usual, you make me more paranoid. Must stop Googling.) They've already had two checks for ROP though, and were both clear. So chances are, they will be okay. In the vast majority of cases it's mild anyway, and even if it's more severe, it can be fixed with a bit of laser surgery.
Also, tomorrow they're having head scans. This is another normal occurrence, but we're a bit more worried this time because Willow had some 'areas of high density' in the white matter of her brain last week. These may just be absolutely nothing, an imperfection with the ultra-sound image, or it could mean there is some bleeding. Naturally, us as parents are drawn towards the latter as our conclusion - but hopefully it's just nothing.
What is surprising to me, is that I haven't turned to the demon drink during this trying time. It could so easily be a way out; but in fact, I drink hardly anything now. You need a clear head in order to take it all in, to be able to talk things through with each other, and to be there for the babies.
And besides, spending a day in NICU with a raging hangover would be even worse than spending it in Dunelm Mill on a Sunday looking at curtains.
Monday 22nd November
After a long day at work, I survived another bus journey to go and see the wife and kids in our 2nd home. When I got there, Leela was holding both of our little babies, which brought a certain amount of warmth to my insides and a big smile to my face.
Willow is already showing Stanley who is the boss, sticking her fingers in his face while he just chills out, ignoring her. I'm sure this trend will continue for the foreseeable future.
Another milestone was reached today - Willow is now in a cot, just like her brother. She's now big enough to be able to maintain her body temperature a bit better.
On the whole, they are both getting more stable, but it is still not relaxing in NICU. They will both have episodes where their heart rate drops, they stop breathing and their oxygen saturation goes down. Although we get used to it, we're quite looking forward to not having to poke our children to remind them that they need to breathe, worrying each time that they just won't start again.
The midnight status call was better than I thought it would be. They both had good blood gases, and Willow's lung situation still doesn't appear to be affected by her stopping the steroids. Hopefully her little lungs are now strong enough to just grow on their own.
Willow is already showing Stanley who is the boss, sticking her fingers in his face while he just chills out, ignoring her. I'm sure this trend will continue for the foreseeable future.
Another milestone was reached today - Willow is now in a cot, just like her brother. She's now big enough to be able to maintain her body temperature a bit better.
On the whole, they are both getting more stable, but it is still not relaxing in NICU. They will both have episodes where their heart rate drops, they stop breathing and their oxygen saturation goes down. Although we get used to it, we're quite looking forward to not having to poke our children to remind them that they need to breathe, worrying each time that they just won't start again.
The midnight status call was better than I thought it would be. They both had good blood gases, and Willow's lung situation still doesn't appear to be affected by her stopping the steroids. Hopefully her little lungs are now strong enough to just grow on their own.
Sunday 21 November 2010
Sunday 21st November
Not a lot to report today. It was a nice Sunday - well, as nice as it gets in NICU. Both babies doing well, with Stanley looking slightly less puffy. Both of them off their CPAP for six hours in total.
Willow had her last dose of dexamethasone (steroids) - so we should see within the next couple of days whether she will start going downhill, without that extra help. She's certainly put herself in a good position though - and we have every faith in her.
We're just waiting for that ascent on the roller-coaster which doesn't have a descent following it. Hopefully we're getting closer.
Willow had her last dose of dexamethasone (steroids) - so we should see within the next couple of days whether she will start going downhill, without that extra help. She's certainly put herself in a good position though - and we have every faith in her.
We're just waiting for that ascent on the roller-coaster which doesn't have a descent following it. Hopefully we're getting closer.
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