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.

Road Trip to Liverpool

After leaving HDU Kaycee went back to the ward.   She was back to her normal perky self, playing laughing and smiling.   A week passed and she started to get a bit unwell again.    Kaycee always started with an upper respiratory infection which if not caught in time she went worse with.   The doctors decided to give her extra diuretics again because of what had happened just a few weeks back.   Within a day she seemed to have sorted herself out, wasn’t working as hard or anything.   Her oxygen requirements had gone up an extra half a litre.   They weren’t concerned because clinically she was fine.   The doctors famous last words.   

The morning when the ambulance was booked for transferring Kaycee to Liverpool, we expressed our concerns about Kaycee going up there as she wasn’t herself.   She seemed to have got worse over the course of the evening.    Because the Cardiac Cath was the next day they didn’t want to not send her as this meant delaying something that needed doing.   So we just went along with it and thought that if Liverpool were concerned then they wouldn’t put her under an anaesthetic if it would put Kaycee at risk.
Michael went in the ambulance with Kaycee and I followed the ambulance in the car.   On arriving there we were placed in a cubicle and within half an hour a doctor had come to see us.   Kaycee got examined fully and we explained that she was in more oxygen than she when she was in Manchester.   They didn’t seem too concerned so the cardiac cath was still going ahead tomorrow.   This to us was a relief as it was another thing to tick off the long list of “Kaycee needs”.

The Consultant came in who was doing the cardiac cath.    He told us before he knew what the results were that this will not fix Kaycee.   Which we already knew.   He told us that an ASD at this age wasn’t problematic and that it was her lungs causing her the problem.    We knew that Kaycee had bad chronic lungs too.   The problem was that Liverpool had been asked on several occasions to take a look at Kaycee’s heart and they weren’t willing to due to her bad lungs.   So this Consultant had already diagnosed Kaycee before actually assessing her via the cardiac cath.   

Friday came and we had to wait all day before Kaycee went down.    This was probably the longest day ever waiting around for them to come get her as we didn’t have a time.     Kaycee went down at 3pm that afternoon.   We had to wait in her cubicle for her to return or to be told she was going to PICU as we didn’t know if she would need to be on the vent for a short time after the op.  
About 5:30pm we got a call and got told that Kaycee was in PICU.   She was off the vent but they were keeping her there for precaution because she had come off into more oxygen than she needed before the op.   The results weren’t really given to us but they said that the ASD wasn’t contributing and that it was her lungs.   We didn’t feel convinced.
We went down to PICU and walked into the cubicle and Kaycee.   It was so funny because she was sat up against a pillow and she thought it was great sitting there kicking her legs.   She got mega excited as soon as she seen us which made me feel so much better.  

Me&Michael got a room for the night because she would be staying there overnight in case she needed to be put back on the vent.    Kaycee was a good girl and got discharged back to the ward early hours of Saturday morning.  
We got to the ward and weren’t impressed with how Kaycee was.      She needed a mask again just to keep her saturations up.   It was like déjà vu all over again.    She also looked so puffy, but this was because on Friday she missed all her medication.   Kaycee is very diuretic dependant and blew up with fluid overload when she missed these.   

Because it was a Saturday she didn’t get transferred back until Monday.   She was stable enough by then although still in a mask.    The ambulance came late evening for Kaycee, so again Kaycee’s diuretics were missed again, causing her to require more oxygen via the mask. 

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