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.

First holiday to Liverpool



Kaycee needed a hickman line done via a small op because she was so hard to canulate due to all her tiny little veins being had.   So she got transported up there.  Kaycee at Oldham was on Cpap 24/7 , and the doctor went mad as he told us she was over ventilated.  At the time we didn’t understand this, we just got told Kaycee “has no lungs” so she needed this support 24/7.    He took her off the Cpap and put her in ambient oxygen in her incubator.   This was the first time since Wythenshawe that we had seen our gorgeous girls face without machines on it.    He also told us our daughter was very poorly.   Her infection markers were through the roof at 265.  A normal babies markers are 5 or below.   We were so upset and angry with Oldham.     When she went for surgery the consultant said that any concerns with regards to her bowel when she goes back to Oldham then to ring them and they will arrange for Kaycee to come back and for studies to be done.   Because NEC had been suspected they knew that they had to make sure she wasn’t threatened by it.    

We went back to Oldham on the Tuesday, I remember everyone being so surprised because Kaycee was in oxygen not on the CPAP.     Kaycee’s tummy was terrible, so distended.   Weeks had passed previously and kaycee’s feeds were started then stopped cause she was so poorly with them.   They told us they suspected “NEC”.   How they told us was like, “oh, its only NEC like it was some sort of tummy bug” not the fact that this takes many premature babies LIFES!!!!!!!!!!!!!!! 

When me and Michael read up on it we went mad, we got pulled into the office and Michael gave the doctors a dressing down.   This was a massive turn around for us as parents.    We were starting to get medically educated from being in this environment 24/7.    We told them we want Kaycee out of Oldham ASAP.   Within hours off we went again this time to Alder Hey Children’s Hospital for Emergency Surgery.    

We arrived at Alder Hey and got seen by her Consultant straight away.  Normally they do a contrast study where they put dye in the body and watch where it goes by x-ray.  They decided to not do this and go for the op.    She was first down the next morning for this operation.

Waiting for her to come out of that operation was probably the worse wait ever (well in Kaycee’s life so far).   It felt like she was gone forever.   When the phone called, my body froze and Michael took the call.    Everything had gone well.   She had a stricture removed secondary to NEC, 4cms of her bowel removed end to end.   The Consultant was very pleased to how it went.    She had been moved to PICU to be observed overnight due to complications that could go wrong.   

Previous to the operation the consultant had explained to us that we could be in Alder Hey for a number of weeks to keep an eye on her and to try and establish feeds, just to avoid complications and future trips up to Liverpool relating to her bowel.   So we had a room at the McDonalds Home from Home accommodation.   We stocked up on food and then went to see Kaycee.   We couldn’t believe what we saw next.    She was READY in a transport incubator ready for OLDHAM!!!   My heart sunk.   I felt sick with worry.   How could they deal with this, they couldn’t deal with her before never mind post-surgery.   I remember kicking up a fuss, and we had all top consultants, nurses in charge everyone speaking to us explaining that because she wasn’t a Liverpool baby she had to go back to her home hospital.   I felt ill!!!

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