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!
Tuesday, 19 October 2010
Monday, 18 October 2010
Sunday 17th and Monday 18th October
Another good pair of days - everything going alright at the moment.
Saturday, 16 October 2010
Saturday 16th October
Had my first cuddle with Stanley today. Amazing feeling, difficult to describe really. Never really thought it would happen like this – I always imagined it happening in the operating theatre straight after the babies were born, not three weeks later.
We’re starting to feel a lot more like real parents now. Most people will just take for granted the fact that they can just hold their babies - and why not; this shouldn't be happening - but I think after this we will always appreciate it.
We’re starting to feel a lot more like real parents now. Most people will just take for granted the fact that they can just hold their babies - and why not; this shouldn't be happening - but I think after this we will always appreciate it.
Friday, 15 October 2010
15th October
There was a certain level of excitement in the air today. Yesterday there was talk of a potential cuddle with Stanley – now that he is relatively stable. He (and Willow) have also had their ‘long lines’ removed now. The long line is basically the main tube which was going up their legs all the way to their hearts. This was the route the major drip was taking, which was providing the fluids and nutrition. So, since the milk intake had now increased to 5ml an hour, this was all the nutrition they should now require; hence the drip could be removed. Another good thing about this was that a major potential source of infection was being removed.
After Nanna and Grandad had visited again today, it was time for the main event – cuddle time. Leela was understandably over the moon at the prospect. Although I’d very much like a cuddle with my babies, I think it is even harder for the mother, and certainly more important for the youngsters.
So Stanley was out of his box for half an hour, and seemed to enjoy being back close to Mummy where he really should still be. I didn’t get to hold him today but perhaps I’ll get the next one. It was amazing to see Leela with one of our babies, especially as it made her so happy.
A bit later on we decided to visit the canteen in the main hospital. Not sure we’ll be doing that again. It’s located down in the basement, and you’re greeted with a very pungent hospital/farmyard smell when you approach the restaurant area. We opted for what was supposed to be an apple doughnut, and a cup of coffee. The ‘doughnut’ was really just a stale bit of dough filled with cheap apple mush, the coffee about as good as you’d expect.
After Nanna and Grandad had visited again today, it was time for the main event – cuddle time. Leela was understandably over the moon at the prospect. Although I’d very much like a cuddle with my babies, I think it is even harder for the mother, and certainly more important for the youngsters.
So Stanley was out of his box for half an hour, and seemed to enjoy being back close to Mummy where he really should still be. I didn’t get to hold him today but perhaps I’ll get the next one. It was amazing to see Leela with one of our babies, especially as it made her so happy.
A bit later on we decided to visit the canteen in the main hospital. Not sure we’ll be doing that again. It’s located down in the basement, and you’re greeted with a very pungent hospital/farmyard smell when you approach the restaurant area. We opted for what was supposed to be an apple doughnut, and a cup of coffee. The ‘doughnut’ was really just a stale bit of dough filled with cheap apple mush, the coffee about as good as you’d expect.
Thursday, 14 October 2010
13th/14th October
I was worrying about the morning call on Wednesday after leaving Stanley with his bradycardia attacks still being quite regular. But – I spoke to the nurse and got a very good report. Since midnight he’d all but stopped being naughty, and was much more stable. Also, the nurse who was looking after Willow, was very pleased with her progress too. He even said there was a possibility of her coming off the ventilator today as well, but not to be disappointed if she was still on it when we came in.
We came into the hospital as normal after lunch, and saw Willow's nurse in the corridor. He said he thought we’d be pleased when we went in. So in we went and Willow was off the ventilator! We couldn’t believe it – and with Stanley doing so much better today as well. We were extremely pleased – almost happy. The trouble is, you don’t want to let yourself be too happy because you never know what is around the corner. This was one of the ‘up’ bits of the rollercoaster.
We went to get a coffee from BP and saw SCAT in there for some taxi talk.
Thursday was another good day, both children very stable. Stanley even got a cake today, for passing the 1 kilo landmark. Although he’d obviously been heavier than that when he’d been born, this was a lovely gesture from one of the nurses, who bakes a cake each time babies hit the 1,000g mark.
So, another good day. We’re trying to enjoy these moments without getting all complacent about it. It may yet all go wrong, but Willow and Stanley’s chances are getting better.
We came into the hospital as normal after lunch, and saw Willow's nurse in the corridor. He said he thought we’d be pleased when we went in. So in we went and Willow was off the ventilator! We couldn’t believe it – and with Stanley doing so much better today as well. We were extremely pleased – almost happy. The trouble is, you don’t want to let yourself be too happy because you never know what is around the corner. This was one of the ‘up’ bits of the rollercoaster.
We went to get a coffee from BP and saw SCAT in there for some taxi talk.
Thursday was another good day, both children very stable. Stanley even got a cake today, for passing the 1 kilo landmark. Although he’d obviously been heavier than that when he’d been born, this was a lovely gesture from one of the nurses, who bakes a cake each time babies hit the 1,000g mark.
So, another good day. We’re trying to enjoy these moments without getting all complacent about it. It may yet all go wrong, but Willow and Stanley’s chances are getting better.
Tuesday, 12 October 2010
Tuesday 12th October
Called this morning and got some very positive news – both Willow and Stanley had good, stable nights and had been weaned off the ventilator quite a bit.
When we arrived at NICU today, everyone was quite excited as Stanley was going to come off the ventilator and onto CPAP. We knew this was a big step in the right direction but that it was not going to be easy for our son. At about 4pm, it was time – so Stanley was ‘extubated’ and transferred onto the CPAP machine. He coped relatively well but it was still not easy viewing for us parents.
So, today was now to prove one of those ‘roller coaster’ days. After such positive things this morning, Stanley was having a really tough time after coming off the ventilator. He had bradycardias every few minutes, and took a while to get his sats back up after each one. Later on, the docs agreed he should move onto ‘Bi Pap’. This is more of a middle ground between the ventilator and CPAP so he should be able to cope a bit better.
He still seemed to be struggling quite a bit, so I was sitting between my two children closely watching the monitors for a few hours.
Thankfully Willow was being relatively stable at this point, but still had the odd episode. This is really no fun at all, watching your baby son and daughter basically fight for their lives all day, every day.
The nurse was doing a great job looking after Stanley, but we had to wait until the handover to ask reassurance from the next nurse, who was on nightshift, that she would not leave him. She told us her husband is called Stanley, so she’d know how to handle him.
So we left after a very up-and-down day, feeling emotionally exhausted. And to top it off I had my annual unexplained bloody painful foot problem!
When we arrived at NICU today, everyone was quite excited as Stanley was going to come off the ventilator and onto CPAP. We knew this was a big step in the right direction but that it was not going to be easy for our son. At about 4pm, it was time – so Stanley was ‘extubated’ and transferred onto the CPAP machine. He coped relatively well but it was still not easy viewing for us parents.
So, today was now to prove one of those ‘roller coaster’ days. After such positive things this morning, Stanley was having a really tough time after coming off the ventilator. He had bradycardias every few minutes, and took a while to get his sats back up after each one. Later on, the docs agreed he should move onto ‘Bi Pap’. This is more of a middle ground between the ventilator and CPAP so he should be able to cope a bit better.
He still seemed to be struggling quite a bit, so I was sitting between my two children closely watching the monitors for a few hours.
Thankfully Willow was being relatively stable at this point, but still had the odd episode. This is really no fun at all, watching your baby son and daughter basically fight for their lives all day, every day.
The nurse was doing a great job looking after Stanley, but we had to wait until the handover to ask reassurance from the next nurse, who was on nightshift, that she would not leave him. She told us her husband is called Stanley, so she’d know how to handle him.
So we left after a very up-and-down day, feeling emotionally exhausted. And to top it off I had my annual unexplained bloody painful foot problem!
Monday, 11 October 2010
Monday 11th October
I’m really feeling a lot of love for these babies now. Got a real wave of emotion while looking at Willow when she looked at me with her big eyes. And Stanley was holding my hand so tightly; I felt proud to be his dad. Stanley was better today and really trying hard to breathe on his own. Looks like they will try and wean him off first before giving him any steroids.
But, Willow was not strong enough, so the steroids will start tonight for her. Let's hope they work.
Dinner was a chicken doner burger and massive chips from Noor. Not very healthy, but very, very tasty.
At the moment we’re a bit worried about the phenomenon of what's known as ‘preemie head’ or ‘toaster head’ where premature babies’ heads get moulded into slightly abnormal shapes. This is due to still having soft bones in the head, and then being laid down rather than floating about in the womb. I’m pretty sure though, that they will sort themselves out. I think we've got enough to worry about anyway.
But, Willow was not strong enough, so the steroids will start tonight for her. Let's hope they work.
Dinner was a chicken doner burger and massive chips from Noor. Not very healthy, but very, very tasty.
At the moment we’re a bit worried about the phenomenon of what's known as ‘preemie head’ or ‘toaster head’ where premature babies’ heads get moulded into slightly abnormal shapes. This is due to still having soft bones in the head, and then being laid down rather than floating about in the womb. I’m pretty sure though, that they will sort themselves out. I think we've got enough to worry about anyway.
Sunday, 10 October 2010
Sunday 10th October
Dinner at the Olds' tonight – rosti and schnatzletz (apologies for bad spelling, Mum. Can't even find that made-up Swiss word on the internet). Bloody nice actually.
I bought a luxurious office chair from Argos on the way to the hospital today. Looking forward, in a way, to setting up my office so it’ll be more comfortable to work from home. Not that I’ll be able to concentrate much.
The babies were both quite stable today, and the doc talked to us about steroids etc. They were going to try them imminently, as both are really going nowhere with breathing at the moment.
I bought a luxurious office chair from Argos on the way to the hospital today. Looking forward, in a way, to setting up my office so it’ll be more comfortable to work from home. Not that I’ll be able to concentrate much.
The babies were both quite stable today, and the doc talked to us about steroids etc. They were going to try them imminently, as both are really going nowhere with breathing at the moment.
Saturday, 9 October 2010
Saturday 9th October
We popped in to visit some friends of a friend on the way to the hospital today - their baby boy is a graduate of NICU. It was good to talk to people that actually understand what we are going through, and to see their son looking so well gives us a lot of hope.
Friday, 8 October 2010
The First Two Weeks - 25th September to 8th October
Leela stayed in hospital for three nights, to recover from the caesarean. Although of course, being her, she didn't want to be pushed about in a wheelchair and was determined to walk everywhere.
The first night, I drove home on my own, feeling completely shell-shocked. Just got home and went to bed, staring into darkness. Not a lot more I could do. I was too numb and confused to feel any real feelings.
That trend continued for the first few days - on the surface, we just accepted what had happened. We spent all day in the hospital, looking at our helpless children.
On the Monday, Leela was allowed to leave the hospital. Driving home from there, without the babies in the car, was totally devastating. Arriving home to an empty house, which has baby stuff all over the place, and an unfinished nursery, was even worse than totally devastating. This was the saddest moment of our lives, and we just collapsed in our own heaps.
The first couple of weeks went by in a bit of a daze. All day, every day at NICU, just looking in the incubators. We started to hear all the things that we'd be hearing a lot over the next few weeks - 'It's a roller-coaster' , 'it's all normal', ' to be expected' . When you ask someone when they think they might be out of hospital, or when they might reach a certain point, you always get the same answer - 'difficult to say, every baby's different'. All we knew was, things were going as expected. Which was pretty craply, from our point of view.
So our babies would start having all the things they'd have to get used to - drips, TPN, lipids, diuretics, cannulas, blood transfusions, x-rays, head scans, antibiotics, steroids, caffeine, morphine, Gaviscon. We'd start learning a hell of a lot more about human biology that we thought we'd ever know.
After about two weeks, the realisation finally sunk in properly. Both of us, at about the same time, had a few really rough days, which we just spent crying. We'd got past the denial stage and kind of woke up. This was actually happening to us and our babies. We just had to get on with it.
The first night, I drove home on my own, feeling completely shell-shocked. Just got home and went to bed, staring into darkness. Not a lot more I could do. I was too numb and confused to feel any real feelings.
That trend continued for the first few days - on the surface, we just accepted what had happened. We spent all day in the hospital, looking at our helpless children.
On the Monday, Leela was allowed to leave the hospital. Driving home from there, without the babies in the car, was totally devastating. Arriving home to an empty house, which has baby stuff all over the place, and an unfinished nursery, was even worse than totally devastating. This was the saddest moment of our lives, and we just collapsed in our own heaps.
The first couple of weeks went by in a bit of a daze. All day, every day at NICU, just looking in the incubators. We started to hear all the things that we'd be hearing a lot over the next few weeks - 'It's a roller-coaster' , 'it's all normal', ' to be expected' . When you ask someone when they think they might be out of hospital, or when they might reach a certain point, you always get the same answer - 'difficult to say, every baby's different'. All we knew was, things were going as expected. Which was pretty craply, from our point of view.
So our babies would start having all the things they'd have to get used to - drips, TPN, lipids, diuretics, cannulas, blood transfusions, x-rays, head scans, antibiotics, steroids, caffeine, morphine, Gaviscon. We'd start learning a hell of a lot more about human biology that we thought we'd ever know.
After about two weeks, the realisation finally sunk in properly. Both of us, at about the same time, had a few really rough days, which we just spent crying. We'd got past the denial stage and kind of woke up. This was actually happening to us and our babies. We just had to get on with it.
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