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

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

Being Naïve



Over the course of the 8 weeks we spent at Wythenshawe SCBU.  We didn’t know much of the medical side that was happening.  We just came and seen Kaycee helped with her cares and just listened to the doctors.  Not that we understood anything they told us even in the simplest of terms they could possibly tell us in.   I just didn’t get any of it.   I remember them once taking us to a side room and telling us that due to the lack of blood going to her toes she might lose one or maybe more.  I remember feeling heartbroken and thinking I don’t want my daughter to have funny feet.  Gosh if only that was her only problem now, I wouldn’t be bothered.  

Its scary how naïve you actually are to it all, every parent we spoke to we all were like, yes that’s what they are doing to my baby.  We all thought it was normal to be like this, and for our babies to be like this.   When in fact looking back, our babies were fighting for survival and trying to fight through SCBU.  Which I now know was the most important part of Kaycee’s life.   Better treatment in the early years helped them so much in later life and to this day I stick by this.   Wythenshawe was a very small but fantastic unit, everyone nurse was brilliant and answered any questions you wanted to ask, even if it was the most silliest question in the world they would answer it.   

Kaycee was doing fantastic, only spent 32 days on the vent, but because she was a micro prem and under 1kg, she had been on the vent for over 28 days she developed Chronic Lung Disease.  At this stage of our life’s we didn’t think too much into that because we got told they grow out of it and live a normal life.   Naivety is an amazing thing.  

Then on 23rd October I went upstairs and got told Kaycee was going Oldham.  I remember running back to Michael and telling him in floods of tears.  Michael re-assured me and we went back up to see Kaycee and to speak to the nurses.   They reassured us and told us because she has been doing fantastic and been on Cpap and having time off in oxygen she was stable enough to be transported back to Oldham for care on a lower level.   Normally a neonate has to reach 1kg to be classed as high dependency, but being the little monkey that Kaycee was instead of putting that extra 20grams on she lost it.  So she was 960grams in weight but classed as high dependency due to the level of breathing support she needed.   Looking back she did do pretty amazing at Wythenshawe and I do believe that if she would have stayed there we quite possibly wouldn’t be in this situation now. Don’t get me wrong she would still have her problems but I think Kaycee was never suitable to be moved from such a specialist unit to Oldham where they had never seen a baby like Kaycee with many complications that she brought with her.  

The transport team arrived and I burst into tears seeing her in her portable incubator, I was heartbroken and scared.   I was leaving a hospital where I had my girls, said goodbye to one of my girls and experienced the hardest days off my life there.  I couldn’t believe that I had to leave after what felt like a lifetime of being there.   I don’t like goodbyes.  I was upset to leave the nurses too as they had been my support at the times that I was struggling, but more than anything I had made friends with other premmie mums.   Friendships that no other friendship could compete with because they too had a special baby, and they understood how you feel and what it was like to feel robbed of your pregnancy.  I again I felt isolated. 



No comments:

Post a Comment