Today I had some of the happiest moments of my life. Stanley was allowed out again today, and both Leela and I have well and truly fallen in love with him. He was so awake and lively and looking up at us with his big, beautiful eyes.
As I’ve been writing this page, sitting watching him, he’s turned his head over three times. I’m feeling quite overwhelmed right now – but for once, it’s a very positive type of overwhelm-ment.
Willow was slightly better today and “peeing for England”. So it looked like things were on the up generally.
Thursday, 4 November 2010
Wednesday, 3 November 2010
Wednesday 3rd November
Bit of a crap day today. I’m feeling really down about Willow. Was very upsetting seeing her today looking all puffy because of fluid retention. Also, I just don’t like Southampton as much and want her to come home to Poole. It probably makes a difference that we started out there so we know how it all works and have got to know the staff.
It feels a bit like we are going nowhere at the moment, and I had some fleeting thoughts that Willow will just never get off this bloody ventilator.
Its times like these that I realize how lucky Leela and I are to have each other. Just can’t imagine getting through this on my own.
I don’t think it helps when we see Stanley in the morning and then go to Southampton – by the evening we are already drained and tired so it’s not going to be good seeing Willow when we’re feeling like that.
On a positive note – Stanley is doing really well, so it’s a real joy when we see him, and are able to hold him like a normal baby.
Just can’t wait to be able to hold our daughter. Cannot bloody wait.
It feels a bit like we are going nowhere at the moment, and I had some fleeting thoughts that Willow will just never get off this bloody ventilator.
Its times like these that I realize how lucky Leela and I are to have each other. Just can’t imagine getting through this on my own.
I don’t think it helps when we see Stanley in the morning and then go to Southampton – by the evening we are already drained and tired so it’s not going to be good seeing Willow when we’re feeling like that.
On a positive note – Stanley is doing really well, so it’s a real joy when we see him, and are able to hold him like a normal baby.
Just can’t wait to be able to hold our daughter. Cannot bloody wait.
Tuesday, 2 November 2010
Tuesday 2nd November
Went to work this morning, where it was a full house. Everyone seemed to be in the Bournemouth office today. I got loads of the same questions and repeated all the answers. My mind wasn’t quite up to fully concentrating, but in a way it was good to try and think about something else.
Got to Southampton and found Willow on her own, looking rather puffy. A male nurse was with her today; he looked, according to my lovely wife, like he’d just come off the street. Willow’s doing alright with her breathing; well, as expected anyway.
Got to Southampton and found Willow on her own, looking rather puffy. A male nurse was with her today; he looked, according to my lovely wife, like he’d just come off the street. Willow’s doing alright with her breathing; well, as expected anyway.
Monday, 1 November 2010
Monday 1st November
Can’t believe its November already.
It’s going to be a pain going to Southampton and Poole every day. Not good for the sanity.
It’s going to be a pain going to Southampton and Poole every day. Not good for the sanity.
Sunday, 31 October 2010
Sunday 31st October
Started the day in Southampton again today. Willow was with the same lovely nurse as yesterday. She’s one of our top five nurses. It’s quite stiff competition to make it into this prestigious list actually; I could possibly even make it a top ten. I suppose this is a good thing – there are so many nurses that we are more than happy with looking after our babies.
Willow had woken up a bit more overnight, but had not yet made great strides in improving her breathing skills.
The docs got an x-ray done to check there was nothing going on in the lungs which they might have missed and which might be causing additional problems.
The x-ray showed the lungs looking a bit fuzzy, but the docs reassured us that it all looked pretty standard. This was all to be expected; Willow had only just undergone major surgery after all.
We were more concerned that she might be in pain, and Leela was becoming leaky-eyed at this prospect. Our babies are so lucky to have her as their mum. She cares about them so much and I know for certain that there is absolutely no-one in the world who would make a better mother.
The plan with Willow is to take it slowly and get her nice and comfortable before weaning her ventilation. Her little body was still getting used to her new circulatory system, which no longer includes an open duct between her two main arteries.
We left Southampton feeling reasonably hopeful and made our way to Poole to see Willow’s brother.
Stanley was being a very good boy again. He came out of his cot for a two hour cuddle, with just nasal prongs for oxygen. Seeing him like that and being able to hold him makes us feel even more like actual parents. It almost feels too good to be true, even at this stage with such a long road ahead still.
Leela’s convinced that he might have a cleft palate. She mentioned it to the nurse and she’s made a note of it for the doctors to look at. I’m sure it’s alright and Leela just saw the dark roof of his mouth.
The last couple of nights we’ve been catching up on missed episodes of ‘An Idiot Abroad’. Although I still feel quite guilty doing anything that involves pleasure while our babies are stuck in intensive care, I think we need a bit of light relief sometimes or we’d be in an even worse emotional state.
Anyway, Karl Pilkington made us laugh so much we almost couldn’t breathe. Surely that can’t be a bad thing for the babies – although I am feeling guilty again just writing this. I just can’t wait for the times in the future when all four of us will be laughing together at something; I’m going to savour every moment.
Willow had woken up a bit more overnight, but had not yet made great strides in improving her breathing skills.
The docs got an x-ray done to check there was nothing going on in the lungs which they might have missed and which might be causing additional problems.
The x-ray showed the lungs looking a bit fuzzy, but the docs reassured us that it all looked pretty standard. This was all to be expected; Willow had only just undergone major surgery after all.
We were more concerned that she might be in pain, and Leela was becoming leaky-eyed at this prospect. Our babies are so lucky to have her as their mum. She cares about them so much and I know for certain that there is absolutely no-one in the world who would make a better mother.
The plan with Willow is to take it slowly and get her nice and comfortable before weaning her ventilation. Her little body was still getting used to her new circulatory system, which no longer includes an open duct between her two main arteries.
We left Southampton feeling reasonably hopeful and made our way to Poole to see Willow’s brother.
Stanley was being a very good boy again. He came out of his cot for a two hour cuddle, with just nasal prongs for oxygen. Seeing him like that and being able to hold him makes us feel even more like actual parents. It almost feels too good to be true, even at this stage with such a long road ahead still.
Leela’s convinced that he might have a cleft palate. She mentioned it to the nurse and she’s made a note of it for the doctors to look at. I’m sure it’s alright and Leela just saw the dark roof of his mouth.
The last couple of nights we’ve been catching up on missed episodes of ‘An Idiot Abroad’. Although I still feel quite guilty doing anything that involves pleasure while our babies are stuck in intensive care, I think we need a bit of light relief sometimes or we’d be in an even worse emotional state.
Anyway, Karl Pilkington made us laugh so much we almost couldn’t breathe. Surely that can’t be a bad thing for the babies – although I am feeling guilty again just writing this. I just can’t wait for the times in the future when all four of us will be laughing together at something; I’m going to savour every moment.
Saturday, 30 October 2010
Saturday 30th October
We were still riding on the crest of yesterday’s positive waves today. Although Willow had not made much progress, she was doing everything the doctors expected and she looked very stable. She was still on large amounts of morphine and paralysis agents, so she didn’t have much choice.
The plan was to start weaning her off the drugs slowly and wake her up; by the time we left she was already beginning to wiggle her hands. She has a very feisty spirit and we are so proud of her. I’m feeling quite positive now that she’ll get through this okay.
Back in Poole, there was some real progress being made. Overnight, I had spoken to a nurse who said that Stanley had breathed on his own without the CPAP mask for a few minutes. This was exciting stuff! When we got in we were told that it was actually 45 minutes that he was de-masked for, and she was going to try him for an hour today.
So we had a proper cuddle with one of our babies, able to see his whole face. This really was like having a normal baby, and one of the best moments of the last five weeks.
We just wanted to bring Willow back and give her a cuddle too.
The plan was to start weaning her off the drugs slowly and wake her up; by the time we left she was already beginning to wiggle her hands. She has a very feisty spirit and we are so proud of her. I’m feeling quite positive now that she’ll get through this okay.
Back in Poole, there was some real progress being made. Overnight, I had spoken to a nurse who said that Stanley had breathed on his own without the CPAP mask for a few minutes. This was exciting stuff! When we got in we were told that it was actually 45 minutes that he was de-masked for, and she was going to try him for an hour today.
So we had a proper cuddle with one of our babies, able to see his whole face. This really was like having a normal baby, and one of the best moments of the last five weeks.
We just wanted to bring Willow back and give her a cuddle too.
Friday, 29 October 2010
Friday 29th October - The Day of the Op
Today was a pretty massive day in the grand scheme of things. Our beautiful little daughter was scheduled to undergo a surgical procedure which should hopefully get her off the ventilator and breathing on her own.
We left home before 7am and made our way up to Southampton. I was becoming increasingly nervous, and was glad that Willow was first on the surgeon’s list. I couldn’t cope with waiting all day.
Shortly after we arrived, the surgeon introduced himself to us. With his floppy-haired good looks and slightly exotic Mediterranean accent, he reminded us of a Greek Hugh Grant. He took us to the parents’ room to brief us on the operation and get the all important parents’ consent. He told us how he was going to do the op and the potential risks of doing it. There are two main risks – 1) that the lungs might get damaged and 2) that she might bleed to death. If the duct was to be ruptured during the procedure, there was not a lot of hope. These babies only have 80ml of blood in them, so it wouldn’t take long to lose it all. “All or nothing” were the words he used. So I signed the form and went to see Willow and give her a kiss. Leela was too upset to go and see her, so I thought I’d better.
We didn’t want to hang around in the parents’ room, so we went out to the car to await the news. The wait for the phone call was the worst twenty minutes of our lives. It’s very difficult to describe how we were feeling, but the overwhelming reaction was that Willow was not going to survive it. Both of us thought this without actually telling each other. It is the most horrifying thought possible – that your child is going to die. Never having children before, this was all very new to us – but it’s amazing how you suddenly just love these babies more than anything in the world.
The minutes ticked by very slowly, and eventually my phone rang. A massive wave of relief and utter joy swept over me as the nurse said that the operation went well. I gave Leela the thumbs up as soon as I heard the positive news and she collapsed in happy tears in front of me. We were so amazingly relieved we couldn’t quite believe it. From the feeling of dread two minutes ago, we were now crying with happiness. Willow was obviously still a very sick little baby, but this was one huge step in the right direction.
We went over to the main hospital for a coffee and a muffin while the nurses made our daughter comfortable again. The rest of the day was spent sitting with Willow and visiting the main hospital again. Southampton General’s weird airport style entrance and main corridor is a very interesting place to visit for people-watching. Patients are wheeled out with their drips as they go outside for a fag, and the swarms of very young doctors and students mill about talking like doctors and students.
We saw Stanley in the afternoon and he came out of his box for a cuddle. All in all, a positive day.
We left home before 7am and made our way up to Southampton. I was becoming increasingly nervous, and was glad that Willow was first on the surgeon’s list. I couldn’t cope with waiting all day.
Shortly after we arrived, the surgeon introduced himself to us. With his floppy-haired good looks and slightly exotic Mediterranean accent, he reminded us of a Greek Hugh Grant. He took us to the parents’ room to brief us on the operation and get the all important parents’ consent. He told us how he was going to do the op and the potential risks of doing it. There are two main risks – 1) that the lungs might get damaged and 2) that she might bleed to death. If the duct was to be ruptured during the procedure, there was not a lot of hope. These babies only have 80ml of blood in them, so it wouldn’t take long to lose it all. “All or nothing” were the words he used. So I signed the form and went to see Willow and give her a kiss. Leela was too upset to go and see her, so I thought I’d better.
We didn’t want to hang around in the parents’ room, so we went out to the car to await the news. The wait for the phone call was the worst twenty minutes of our lives. It’s very difficult to describe how we were feeling, but the overwhelming reaction was that Willow was not going to survive it. Both of us thought this without actually telling each other. It is the most horrifying thought possible – that your child is going to die. Never having children before, this was all very new to us – but it’s amazing how you suddenly just love these babies more than anything in the world.
The minutes ticked by very slowly, and eventually my phone rang. A massive wave of relief and utter joy swept over me as the nurse said that the operation went well. I gave Leela the thumbs up as soon as I heard the positive news and she collapsed in happy tears in front of me. We were so amazingly relieved we couldn’t quite believe it. From the feeling of dread two minutes ago, we were now crying with happiness. Willow was obviously still a very sick little baby, but this was one huge step in the right direction.
We went over to the main hospital for a coffee and a muffin while the nurses made our daughter comfortable again. The rest of the day was spent sitting with Willow and visiting the main hospital again. Southampton General’s weird airport style entrance and main corridor is a very interesting place to visit for people-watching. Patients are wheeled out with their drips as they go outside for a fag, and the swarms of very young doctors and students mill about talking like doctors and students.
We saw Stanley in the afternoon and he came out of his box for a cuddle. All in all, a positive day.
Thursday, 28 October 2010
26th, 27th, 28th October - Moving to Southampton
Mostly quite alright days.
Stanley moved to CPAP on Thursday, after getting stronger each day.
Talked to Doc about Willow’s op. He was very good as usual, giving us all the info, but it made us realize exactly how poorly Willow is. Leela was quite upset by it, and had a few leaky-eye moments.
Willow moved to Southampton on the Thursday afternoon. We went on up there to check out our daughter and her new temporary home. We found the hospital quite easily, but it was very easy to find. Didn’t really need all the different travel hints and tips given to us by the NICU nurses. But they were only being nice.
We got to Southampton and found Willow in Nursery 3 in the much larger NICU – she had a cabriolet incubator, which made it much easier for us to see her and hold her nicely. The staff all seemed very good and personable, but their average age looked about 16 ½. I half expected our surgeon to actually be Doogie Howser.
When the nurses were doing their handover to the night shift, we got shunted out of the nursery and directed to the parents’ coffee lounge. ‘Holy shit’, we both exclaimed silently, as we turned into the room. We’d been warned that the chav quota was higher in Southampton than in Poole, but nothing could have prepared us for the specimen that was sprawled out on an armchair in the coffee room. He grunted a few questions at us, which we answered as nicely as possible so as not to aggravate him. A question he asked me gave away a big clue to his positioning at the bottom of the social barrel – “Do you work, then?" rather than the usual question you might get “where do you work, then?” His partner wasn’t much better either, nor was the smell omitted by the pair of them. We were quite relieved when handover was finished so we could leave that room.
Stanley moved to CPAP on Thursday, after getting stronger each day.
Talked to Doc about Willow’s op. He was very good as usual, giving us all the info, but it made us realize exactly how poorly Willow is. Leela was quite upset by it, and had a few leaky-eye moments.
Willow moved to Southampton on the Thursday afternoon. We went on up there to check out our daughter and her new temporary home. We found the hospital quite easily, but it was very easy to find. Didn’t really need all the different travel hints and tips given to us by the NICU nurses. But they were only being nice.
We got to Southampton and found Willow in Nursery 3 in the much larger NICU – she had a cabriolet incubator, which made it much easier for us to see her and hold her nicely. The staff all seemed very good and personable, but their average age looked about 16 ½. I half expected our surgeon to actually be Doogie Howser.
When the nurses were doing their handover to the night shift, we got shunted out of the nursery and directed to the parents’ coffee lounge. ‘Holy shit’, we both exclaimed silently, as we turned into the room. We’d been warned that the chav quota was higher in Southampton than in Poole, but nothing could have prepared us for the specimen that was sprawled out on an armchair in the coffee room. He grunted a few questions at us, which we answered as nicely as possible so as not to aggravate him. A question he asked me gave away a big clue to his positioning at the bottom of the social barrel – “Do you work, then?" rather than the usual question you might get “where do you work, then?” His partner wasn’t much better either, nor was the smell omitted by the pair of them. We were quite relieved when handover was finished so we could leave that room.
Monday, 25 October 2010
Tuesday 25th October
Last night’s midnight status was surprisingly good after a bad day, so I could have done with another good one this morning, And it was good! Both junior Seniors had been nice and stable. I was at work when I called so that helped me cope – I find it so hard to concentrate when I am in the office.
I worked until 2.30pm and went to get the train to Poole. When I got to the hospital to meet Leela, I bumped into someone from Twin Club, who was there with his wife who was being induced at 39 weeks. While I am very happy for them to have made it all the way, part of me is pretty gutted and annoyed about how we didn’t make it. Seeing them makes you realize how damn early ours came out. Anyway, I hope it all goes okay for them.
Today in NICU was much better than the last few days – mainly because they were both more stable and it was quite quiet in there. We had a nice coffee and people-watching break at the legendary Costa as well. Leela wasn’t able to use her Costa card though, so she’ll be going on about that for another ten years now……..
I worked until 2.30pm and went to get the train to Poole. When I got to the hospital to meet Leela, I bumped into someone from Twin Club, who was there with his wife who was being induced at 39 weeks. While I am very happy for them to have made it all the way, part of me is pretty gutted and annoyed about how we didn’t make it. Seeing them makes you realize how damn early ours came out. Anyway, I hope it all goes okay for them.
Today in NICU was much better than the last few days – mainly because they were both more stable and it was quite quiet in there. We had a nice coffee and people-watching break at the legendary Costa as well. Leela wasn’t able to use her Costa card though, so she’ll be going on about that for another ten years now……..
Sunday, 24 October 2010
Sunday 24th October
1 month old today!
That month has gone surprisingly quickly, but has undoubtedly been the most emotionally draining month of my life. Spoke to the nurse for this morning’s report. Both have had reasonably stable nights, and we were pleased to hear Stanley is still not back on the ventilator.
Ooops – forgot to mention for yesterday – Willow’s PDA. The doc spoke to us about Willow’s condition, and that it was quite likely she would be having the operation to close the duct in her heart. Although they are not sure that this is the root of all her problems, it is certainly there and at least it would rule out that issue for good. We are not entirely shocked she might need the op, but it’s not going to be nice seeing her go off to Southampton and them being separated like that. But, not a lot we can do about it, and if it needs doing, it needs doing.
Today in NICU wasn’t particularly pleasant – but again for no particular reason. The room was very busy again today – lots of babies making lots of noises. I’d much rather ours were the only babies in there sometimes.
I couldn’t wait to get out of there really – which I feel bad about because I want to be with Willow and Stanley. But it’s no good for anyone if we’re losing the plot and need a break.
So, we’re on a bit of a lull at the moment, near the bottom of the rollercoaster.
That month has gone surprisingly quickly, but has undoubtedly been the most emotionally draining month of my life. Spoke to the nurse for this morning’s report. Both have had reasonably stable nights, and we were pleased to hear Stanley is still not back on the ventilator.
Ooops – forgot to mention for yesterday – Willow’s PDA. The doc spoke to us about Willow’s condition, and that it was quite likely she would be having the operation to close the duct in her heart. Although they are not sure that this is the root of all her problems, it is certainly there and at least it would rule out that issue for good. We are not entirely shocked she might need the op, but it’s not going to be nice seeing her go off to Southampton and them being separated like that. But, not a lot we can do about it, and if it needs doing, it needs doing.
Today in NICU wasn’t particularly pleasant – but again for no particular reason. The room was very busy again today – lots of babies making lots of noises. I’d much rather ours were the only babies in there sometimes.
I couldn’t wait to get out of there really – which I feel bad about because I want to be with Willow and Stanley. But it’s no good for anyone if we’re losing the plot and need a break.
So, we’re on a bit of a lull at the moment, near the bottom of the rollercoaster.
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