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.
Friday, 29 October 2010
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.
Saturday, 23 October 2010
Saturday 23rd October
Morning report said Stanley had been a good boy. We were worrying it might have said he was back on the ventilator. Just need the little fella to keep it up.
Willow didn’t have such a good night – she needed bagging a few times, and it turns out it was due to the tube not being in the right place.
When we got to NICU we found both our children relatively stable. Willow was basically okay until she fidgeted and moved the position of the tube, at which point she would de-sat again. We had quite a nice chat with some nurses, and appeared to be having a nice day.
As the day went on, I became increasingly aware of all the noise in there today. There were quite a few babies in, and the monitors were going off all over the place. For lack of better words, it was ‘doing my head in’.
Mum and Dad visited just after six and stayed till seven. It started off okay but while they were there, both kids started playing up; having bradys and de-sats all over the place. We just felt like we were in the way, and I know Mum and Dad were getting quite upset, probably because I was obviously upset. It was all building up and I felt like my head was going to explode. After Mum and Dad went home, I could see it was getting to Leela too, and she started crying. Today, which had started so promisingly had gone very downhill – without anything really bad actually happening.
We talked about it, which always helps, and popped into Mille on the way home to pick up another amazing take away. And, of course, it’s Saturday, so X Factor was on. Which almost makes me want to be back in NICU.
Willow didn’t have such a good night – she needed bagging a few times, and it turns out it was due to the tube not being in the right place.
When we got to NICU we found both our children relatively stable. Willow was basically okay until she fidgeted and moved the position of the tube, at which point she would de-sat again. We had quite a nice chat with some nurses, and appeared to be having a nice day.
As the day went on, I became increasingly aware of all the noise in there today. There were quite a few babies in, and the monitors were going off all over the place. For lack of better words, it was ‘doing my head in’.
Mum and Dad visited just after six and stayed till seven. It started off okay but while they were there, both kids started playing up; having bradys and de-sats all over the place. We just felt like we were in the way, and I know Mum and Dad were getting quite upset, probably because I was obviously upset. It was all building up and I felt like my head was going to explode. After Mum and Dad went home, I could see it was getting to Leela too, and she started crying. Today, which had started so promisingly had gone very downhill – without anything really bad actually happening.
We talked about it, which always helps, and popped into Mille on the way home to pick up another amazing take away. And, of course, it’s Saturday, so X Factor was on. Which almost makes me want to be back in NICU.
Friday, 22 October 2010
Friday 22nd October
4 weeks today!
The morning report said that Willow’s CRP had gone up from 12 to 16. This is a check they do in the liver, which is a good indicator that there might be an infection. The number is usually <1, but can go up to 100s. So a 16 definitely indicates that the liver is fighting something – probably an infection.
Stanley had not been quite as stable overnight, but nothing too worrying. We just don’t want him going back to the ventilator - don’t think we could handle that right now.
Since Willow went back on the vent, Leela has not quite been herself - and to be honest I am going through a rough mental patch at the moment. Sometimes I think I just can’t handle it, and almost want to break down and cry. This tends to come and go. After you’ve had a good cry, it makes you feel much better. Anyway, only 10 weeks to go.....
On a positive note, today we went to the doctor so Leela could get sign-off to drive again. He gave her the all clear so she was very happy. I know it’s been hard for her as she does love her driving, plus it must be a nightmare a) relying on me to drive everywhere and b) simply being a passenger in a car that I’m driving. I’ll not be sad to let someone else drive again, that’s for sure. My driving skills appear to be diminishing all the time.
The morning report said that Willow’s CRP had gone up from 12 to 16. This is a check they do in the liver, which is a good indicator that there might be an infection. The number is usually <1, but can go up to 100s. So a 16 definitely indicates that the liver is fighting something – probably an infection.
Stanley had not been quite as stable overnight, but nothing too worrying. We just don’t want him going back to the ventilator - don’t think we could handle that right now.
Since Willow went back on the vent, Leela has not quite been herself - and to be honest I am going through a rough mental patch at the moment. Sometimes I think I just can’t handle it, and almost want to break down and cry. This tends to come and go. After you’ve had a good cry, it makes you feel much better. Anyway, only 10 weeks to go.....
On a positive note, today we went to the doctor so Leela could get sign-off to drive again. He gave her the all clear so she was very happy. I know it’s been hard for her as she does love her driving, plus it must be a nightmare a) relying on me to drive everywhere and b) simply being a passenger in a car that I’m driving. I’ll not be sad to let someone else drive again, that’s for sure. My driving skills appear to be diminishing all the time.
Thursday, 21 October 2010
Thursday 21st October
Today was slightly easier; seeing Willow being a lot more comfortable on the ventilator was much nicer to watch. Stanley had been good as well, and he came out for another cuddle.
We talked to the doc about everything. It looked like Willow did have an infection, so they had started the antibiotics during the night. So her ‘episodes’ were probably down to a combination of infection, reflux, PDA etc.
The doc alleviated my fears that Stanley had a serious heart defect – it was definitely not hypo-plastic left heart syndrome. I will stop Googling from now on!
Went for a spontaneous dinner at Miller and Carter (Mountbatten Arms) on the way home, where we had a VERY nice burger and chips.
We talked to the doc about everything. It looked like Willow did have an infection, so they had started the antibiotics during the night. So her ‘episodes’ were probably down to a combination of infection, reflux, PDA etc.
The doc alleviated my fears that Stanley had a serious heart defect – it was definitely not hypo-plastic left heart syndrome. I will stop Googling from now on!
Went for a spontaneous dinner at Miller and Carter (Mountbatten Arms) on the way home, where we had a VERY nice burger and chips.
Wednesday, 20 October 2010
Wednesday 20th October
Just called NICU and got some positive status updates. The nightshift nurse was still in from her nightshift and gave me the lowdown on Willow – who has been good since 2am. Stanley is also stable. Keep up the good work, kids!
The doc called the house at about 9.30pm. I picked up the phone and just heard the beeps of the NICU; which is obviously immediately unsettling. He told me that they had to put Willow back on the ventilator after having a massive bradycardia and needing bagging again. So were a bit gutted about this, but that was obviously for the best and there’s nothing we can do about it.
Also, tonight I did some bad Googling. Just before The Apprentice started, I was trying to find out what problem Stanley had with his heart. I knew it was an issue with his left ventricle, so the first possible problem Google suggests is something called ‘Hypo-plastic left heart syndrome’ which is possibly the worst thing I could have read. This is where the left side of the heart is totally under developed, and will always need major surgery, if not a transplant. So, assuming this is what Stanley had, I went downstairs and quietly panicked whilst watching The Apprentice. I didn’t tell Leela because I didn’t want her to worry as well, so I squirmed on my own. Needless to say, I didn’t get much sleep that night.
The doc called the house at about 9.30pm. I picked up the phone and just heard the beeps of the NICU; which is obviously immediately unsettling. He told me that they had to put Willow back on the ventilator after having a massive bradycardia and needing bagging again. So were a bit gutted about this, but that was obviously for the best and there’s nothing we can do about it.
Also, tonight I did some bad Googling. Just before The Apprentice started, I was trying to find out what problem Stanley had with his heart. I knew it was an issue with his left ventricle, so the first possible problem Google suggests is something called ‘Hypo-plastic left heart syndrome’ which is possibly the worst thing I could have read. This is where the left side of the heart is totally under developed, and will always need major surgery, if not a transplant. So, assuming this is what Stanley had, I went downstairs and quietly panicked whilst watching The Apprentice. I didn’t tell Leela because I didn’t want her to worry as well, so I squirmed on my own. Needless to say, I didn’t get much sleep that night.
Tuesday, 19 October 2010
Tuesday 19th October
Called NICU in the morning (from work - my first day back in the actual office). Stanley is back on BiPap- but “don’t worry, this is normal”. Willow not looking too great, she’s quite pale and having quite a few ABCs, sometimes needing bagging. Not very nice for us parents at all. You kind of get used to the bradycardias but Willow was having a few big ones today. She had an x-ray on her chest and abdomen and the doc said it looks ok – nothing in there to worry about. A bit of gas build up in her gut, but its ok. So it might just be excess fluid causing problems – they have given her some medicine to help her urinate more to reduce the fluids.
Stanley was very stable today, but no cuddles. Good to see both of them pooing nicely!
Stanley was very stable today, but no cuddles. Good to see both of them pooing nicely!
Monday, 18 October 2010
Sunday 17th and Monday 18th October
Another good pair of days - everything going alright at the moment.
Subscribe to:
Posts (Atom)