I havent really spoken about Hopes brain problems and the possibilities we had been warned about since she was in the womb and they found fluid at 22 weeks, its been very hard to talk about because of the sadness and the emotional drain and also because we never had any actual facts just a list of possibly maybes!! This tough journey started with us being told she wouldnt make it to birth and since birth every couple of days we have had staff telling us the chances of her having an understand of life was very slim. All MRI scans have been reviewed by leading brain specialists and today we actually finally got some answers after months of uncertainty! Here is a message that I sent out to family members and friends.........Yesterday I was really down in the dumps... Hope was dragged last minute for another tap because when they done her scan the fluid in her brain had dramatically increased, draining the fluid is a horrible procedure which saddens me because I panic about her. Her brain specialists have been reviewing the possibilities as to why this happens and we had been warned it could be for various reasons. 1 the worst reason of all is that her brain hasnt grown and the fluid was there to fill the space and that Hope would have a very limited understanding of life. Another option was a drainage problem... Fluid enters all of our brains to keep fresh and then drains out on a constant cycle a bit like the spit in your mouth but what drains her fluid out in her brain is to small and not working or the last option was a mixture of small brain and drainage issue! The specialists have been reviewing her head scans and have reached a conclusion. Our miracle baby only has a drainage problem!! She stands a chance of living a completely normal life!! Obviously we wont know for some time if the pressure before she was born has restricted her brain and may cause less serious learning difficulties but even this is a million times better than what could of been! We where told at 22 weeks she would survive until birth and she kept proving everyone wrong and still is, including me! Ive never so hard in all of my life with joy and happiness. She is such a fighter, she is so strong and she really does give me more HOPE everyday! The good news doesnt stop there! She has had feed specialists monitor her bottle feeds with me today and she apperently has amazing coordination for a baby her size when it comes to the suck, swallow and breath she just lacks a bit of stamina which will build with practice!! All my love from a proud mum and dad of 4 exceptionally amazing daughters xxxxx
Posted on: Mon, 15 Sep 2014 18:06:59 +0000
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