As most of you know Kaycee Brooks is 18 months old (corrected age 14 months, meaning if she was born on her due date this would be her age now) She is a surviving twin and was born at 25 weeks and 2 days. Her sister, Corrie (said like the boy’s name Corey, not after my favourite soap … ha) sadly passed away in the womb at 25 weeks.



Kaycee has spent most of her life in hospital. In total she has spent a mere 9 weeks at home on and off, the longest stretch being 10 days without a Hospital admission. She has given the hardest strongest fight of survival and still to this day (01.03.2012) Kaycee is still fighting and literally living life on the edge.



I thought it would be nice to let people know her full background and share her life experience properly, just for future reference for Kaycee to read back on when she’s a big girl and also to help or guide, anyone who will either experience any part of this situation.



The reason for me publishing a blog, with a donation button on is not out of pure cheek, not us being a charity case but simply to raise a bit of money for Kaycee, her future, her care (if we need to seek quicker care privately) travelling and living expenses whilst we hold vigil besides Kaycee. I do not want anyone to think we are begging, I just feel with all the support we have people will understand, and not take pity but want to support us. We are hospitalised and we aren’t living in “real life” and people are always always asking what can we do to help. So I spoke to a support worker and she suggested this and to be honest it has took me a good number of months to actually do this, to sit down and re-live Kaycee’s life and to relive my experience with my other daughter Corrie.



It does bring back a lot of painful but happy memories but also angers me at the same time because I do see it from other peoples points of view, when I sit down and think of our situation and see that we have and are in such a bad position in life. But we have been dealt with these cards in life and we have to deal with that.



I am only as strong as I am because I have the most amazing daughter anyone could ever dream of having and I think this applies to most premmie parents or long term sick children. You truly are blessed to have a special child. I totally believe that we are blessed and I do not wish to change anything in my life. I just wish better health for Kaycee and may be one day be that in 1 month’s time or 10 years we will live a normal happy life as a family at home. But in the meantime I will make sure every 24 hours of my daughter’s life has a special memory. Not only does she inspire her army of fans but she is a true inspiration to us as parents. And the most warmest thought is I have two of these girls, and although Corrie isn’t here, I know she is exactly the same as Kaycee and wherever she is she is being a cheeky girl and making everyone love her just as much as Kaycee is doing down here with us.



I am truly truly blessed to be her mummy.



About Me

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There are no classes in life for beginners: right away you are always asked to deal with what is most difficult.

We was looking forward to a lovely Christmas

The week before Christmas Kaycee started to get worse and during the course of the week her oxygen kept going up.   The doctors just kept saying that the virus that she has is a nasty one and that she will ride it out.   We couldn’t believe what we were hearing.   This was the same baby that to them has no reserve, she has none to pick herself up and recover without the aid of machines.   We were so angry as for weeks we had been saying she isn’t well, please can something be done.
During the nights Kaycee’s saturations were dipping, because she sleeps with her mouth shut and because her nose was blocked she wasn’t receiving enough oxygen and the only way to make her saturate better was to poke her or move her onto her other side.  This obviously wasn’t a suitable way to treat a baby and it was tiring for me never mind poor Kaycee.  I was getting so upset with the nursing staff at the night time and really getting to the point of snapping.  
Christmas Eve was the worse night I have ever had with Kaycee.   All night she was very unsettled.   Kaycee never cries and I mean never.  Only if something is really really bothering her and obviously if she isn’t receiving enough oxygen she goes mad as this is the only way of her telling us … HELP!!! 
Christmas Day morning came and I was shattered.   I didn’t want it to be Christmas as this was not how we had planned to celebrating the same.   Kaycee’s doctor came in and we told her about the bad night and she didn’t seem too concerned.   She said that we might have to just accept lower saturations whilst she isn’t the best.   I wasn’t reluctant to accept this but she was the doctor.    During the course of the day Kaycee started to get worse.    Michael’s parents came and we tried to have a bit of a Christmas Day unwrapping presents and having a bit of a dinner.    Kaycee still wasn’t the best so we called the nurses to call the doctor.   This time we demanded something got done about it because we were all too familiar with the visits to PICU. 
It took several hours for the doctors to realise that Kaycee wasn’t getting any better but in fact worse.   They decided to take bloods and the usual stuff they normally do.    Everything was stable, but obviously looking at Kaycee clinically she didn’t look stable.     Again the doctors just said let’s just “sit on her” … We couldn’t believe what we were hearing.   We wanted to scream at them.   We knew she needed moving from a ward to High Dependency.    
Later that evening things went from bad to worse   Kaycee had a bath and seemed ok(ish) and we put her in bed usual routine.   She went sleep and then all of a sudden her saturations dropped to the 50’s.    That was the final straw.  Michael snapped.   PICU doctors were called as Kaycee was too unstable for the ward.   Which was obvious to us 2 weeks ago.   We were so angry by this and scared at the same time because we could see that Kaycee would need a vent again just to get herself back to how she was.  
Up came the doctor and told us that Kaycee was being transferred to PICU and they will assess her down there.     By this point Kaycee was in a bad way and the doctor needed to “bag her” (support her by hand) all the way down to PICU.      On arriving at PICU she was placed on the cpap.   She couldn’t cope on that and ended up on Bipap which gives you breathes.   If she couldn’t do this then she would need the vent.    The consultant that evening knew Kaycee well and just decided to give her the benefit of the doubt.   She wanted to make sure she was comfortable so she gave her medicine to sleep and extra diuretics to make her lungs less wet so she wasn’t fighting a massive battle to clear infection and water retention.     
24 hours later Kaycee was discharged to HDU.   This was a relief because it meant that she didn’t need the vent for extra support.  

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