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.
Saturday 30 October 2010
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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