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.

Back in Manchester.

We arrived late evening back to the ward.    Within a matter of a few hours we knew Kaycee wasn’t right and that she would need support at some point.   We explained to the doctors that she had missed at least 6 doses of her diuretics over the course of the weekend.  The doctors decided to give her some extra to see if this would bring her oxygen down.   She also ordered another x-ray.  Whilst we waited for all this to be done the doctor took bloods to check for infection due to having anaesthetic one of the side effects can cause chest infections.    X-ray was done and the results just confirmed that Kaycee was fluid overload.   Kaycee was transferred back down to High Dependency to put her on the Bipap as she needed extra support until she wasn’t as puffy.    
A few days passed and Kaycee started to get back to normal.   The Cardiologist and Respiratory team yet again started to argue about the causes of this.   Cardiology again agreed that the Cath results weren’t as clear as they wanted them and that some of the things weren’t done what Manchester had asked for.   So they told us they were going to get back in touch with Birmingham for a second opinion.   At this point we were getting cross because we were at the same point as we were before the weekend … No answers.
Cardiology came back and told us that Birmingham wasn’t happy to intervene at this point but for Manchester to get in touch with Great Ormond Street. 
Due to Kaycee being unlucky and having the life threatening Pulmonary Hypertension an ASD and Chronic Lungs Disease there is a Pulmonary Hypertension Clinic so he would assess Kaycee properly and decide from there what treatment she would need for the pulmonary hypertension or whether the ASD need to be shut with a device to decrease the size of the hole.  This referral would take a while to sort so again waiting again. 
Kaycee was down in HDU for a week and then went back to the ward to wait for her next op – ENT.

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