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.



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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.

Journey begins in PICU

At Oldham Kaycee had a nebuliser which totally knocked her off and dropped her sats massively.  It was scary.   She went all floppy and funny coloured.   From what was going to be a controlled event turned into a nightmare.   All the nurses were flapping.  Kaycee got moved to another room which was classed as a high dependency room.   Oldham only had one of these because they rarely came across babies like Kaycee.   We knew this on previous admission and due to her horrible stay in SCBU.   But being forgiving parents we trusted them with our daughters life again.    This was starting to wear very thin though as the more they were doing to Kaycee the more she got distressed.      The transport had been booked but they weren’t able to get to Kaycee until 7pm.   This meant that for the next 4 hours Kaycee would have to be tubed, sedated and kept stable.  
Obviously we were at Oldham and nothing is ever simple.   We had to kiss Kaycee and go out of the room.  It was like torture for us.  All I wanted to do was hold my baby and stop her being so upset whilst the doctors poked and prodded at her.   They thought Kaycee had been on the vent for 171 days which in fact it was nothing like that at all, possibly only 56 or something so pety to what they were stating so they were scared to put her on the vent which was even worse because they decided for the next 3 hours they would “bag her” (put an oxygen mask over her face and give her breathes) It was unbelievable.    
The transport finally arrived at 8pm that evening.   This had been going on since 2pm.   Was a nightmare for us and obviously for Kaycee.   It took another 4 hours for them to stable Kaycee and get her sorted for transport.   This was the first time at midnight that we were able to see our gorgeous girl.   She didn’t look the best, in fact now when I look at the picture of her from that day I see how poorly she actually was.
The ambulance set off and we went just before them.    We discussed the events in the car and reassured each other that everything will be fine.   We were mortified that Oldham had let us down again!   I think we both agree that we will never put Kaycee’s life in their hands EVER again.  
On arriving at Central Manchester Children’s Hospital it was scary walking down the long corridor of PICU entrance.   Then all of a sudden the door flew open and they were running in with Kaycee.   She had taken a massive turn for the worse on the journey down and was having to be “bagged” into PICU.     The nurse told us to sit in the parent’s room and wait.  
Again the wait for agonising.   It wasn’t until 2:30am that we actually got to see Kaycee.   It was frightening. Nothing like the SCBU days, it was far much bigger and scarier and so much medical equipment.   I couldn’t believe that it was all for Kaycee.   I was in shock and shaken from the previous events.   We were shattered and needed to get some sleep.   Kaycee was stable that was the main thing.  
The next thing was to correct what Oldham had told Central Manchester because their hand over on Kaycee was very shocking, nothing was true well more like Chinese whispers which was quite scary.  It’s just a good job we were there to tell them the story of Kaycee’s life.  

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