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.
Saturday, 23 October 2010
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.
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!
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