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.
Subscribe to:
Posts (Atom)