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.
Wednesday, 24 November 2010
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.
Saturday, 20 November 2010
Saturday 20th November
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.
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.
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!
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