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.
Saturday, 4 December 2010
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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