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.

10th October 2010

Leading up to the 10th October as said before Kaycee wasn’t 100%.   She had to have the flu jab with it being her first proper winter in the community.  She was also due her 12months immunisations and had an injection to protect her from RSV (bronchiolitis).  So within the three weeks of being home she had one jab a week.   To add to them jabs she was teething.  This got too much for her and she got a chest infection.   The Sunday evening she went to sleep and was fine then in the early hours she started to work a little bit harder and dropped her sats in the night.   After a quick discussion with Michael we decided she was ok for a drive down to Manchester as we had a saturations monitor and to be honest once she was awake and dressed she was more perky.    So off we went in the car again.    On the way down Kaycee was smiling and looking at the lights.  She had never been out in the evening before so this was a new thing.   We had the monitor on her and although she was in 2 litres of oxygen we knew she was ok and safe so we just carried on past Oldham hospital onto the motorway to Manchester.  
On arriving, we got Kaycee in the pram and she looked better than she had over the past few weeks.   We was joking and wondering whether to take home because she actually looked fine, and we didn’t want to waste the nurses and doctors time just to be sent home the day after.    We decided that we would get her looked at just to make sure.
Once we were in A&E, we waited for the nurse to assess Kaycee.  We went into the side room and I took Kaycee’s coat off.   Within seconds she was screaming and crying.  Kaycee NEVER cries, I know that sounds silly but she doesn’t unless something is up.   I looked at her and she was BLUE.   The nurse panicked and we had to run through to the High Dependency part of A&E which was just behind the room we were in.   A monitor was put on Kaycee and she was saturating at 63, which is obviously not good.   Kaycee was very distressed and upset as she wasn’t getting enough oxygen.   She was placed on a mask and she calmed down.    The doctor was rushed down and he took bloods, put a canula in her head and got in contact with her consultant.     Because Kaycee was Kaycee they decided to admit her and this time she was admitted to PICU with the plan to put her on CPAP that helps her breath.   
We were transferred to PICU later that morning.   The staff welcomed us back, in the nicest way possible.    We just thought she would need a bit of extra support get over what she had and then get put back on a ward.    We couldn’t have been more wrong.
Kaycee managed to sort herself out once she had calmed down and put on the machine, her breathing calmed down and everything looked a bit better.    48 hours passed and they were talks of Kaycee being moved to High Dependency as she was classed as “Stable”.    The next few hours passed and things weren’t looking the best.   Kaycee’s oxygen requirements went up to 100% and she was struggling again.    Then all of sudden everyone was running around and within the matter of 15 minutes a tube was being placed down Kaycee’s throat and she was back on the vent.    Again backwards we went, what felt like a 100 steps. 
We felt deflated seeing Kaycee like this again.   How many more times could one little girl do this.   To make matters worse every day since arriving on PICU the doctors had dragged us in the office for what we called “doom chats”.   Kaycee won’t survive written across their heads.   They told us with babies like Kaycee what the general trend is her PICU admissions will become more frequent as the winter progresses until eventually us as the parents have had enough and we want to let her go.  I remember thinking in my head are you for real, when “we” have had enough?   How could they talk about my baby in this manner.   I don’t think so this is my baby and my baby fights and continuously proves the doctors wrong.   Fair enough if one day she’s given her all and we know in our hearts that she has had enough then fair enough but we believe as parents if Kaycee fights and gets herself well then that is obvious to us that she wants to be here. 
One of the doctors had arranged a meeting for us with a Chronic Lung Disease Specialist, initially we thought this would benefit us loads because we would be able to ask questions that we have never wanted to ask for ages and see if we could shed a bit more light on this disease that our daughter has.    We went to the “doom room” for the chat.   When we got in the room the lady introduced herself.   We couldn’t believe what we were hearing.  It was a lady from Palative Care.   I sat there and thought to myself let me see what she has to say, because if she starts talking about my girl not being well and the future I would walk out, as we had only just come out of a doom chat.   She started talking and her first question was “Have you thought about Kaycee’s funeral arrangements?” … OMG I couldn’t believe what she had just said, I asked her why she was asking and she told me that she isn’t going to survive.    I remember going mad, I asked her if she was god.  I gave her a right dressing down and said she had no right to be having this conversation with us when my little girl was fighting for her life in there.   We stayed and put her to rights.   To be honest I don’t think she had been given the correct information from the doctors and even she was shocked of how we thought about things.   It didn’t stop us being angry and upset though.   Even the nurses couldn’t believe that this lady had come talking to us as they all knew that Kaycee wasn’t well but she was an ex prem and it was expected that they have a rocky time during the winter, especially if it is their first winter.  
Kaycee did better this time round coming off the vent.  To the point where all the doctors were surprised.   They didn’t believe that the flu jab and all the other jabs had initially knocked her off and then on top she got chesty.   Kaycee also struggles with fluid retention due to her hole she has in her heart so all this doesn’t help Kaycee at all.    The doctors decided not to send her over to High Dependency due to the fact she was due her 2nd part of her flu jab.   Kaycee had her jab and again it knocked her off again.   Finally the doctors could see what we had been saying and agreed she obviously doesn’t like jabs.  

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