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Meet the geneticist: Are my future babies at risk and more than I bargained for..

Ok, so I'm not actually going to post a pic of his geneticist, or give any names but this blog will give you a little background on Jaxons geneticist, what he does, and our most recent appointment with him which was this morning (Tuesday 1st May 2018). I originally met the genetics doctor in November …

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Post OP thoughts: What the hell happened?

Its 10pm the night of the op and I'm desperately trying to relieve the tension in my head by writing out the days events. It may not relieve my head ache but it will at least document my fresh thoughts. Jaxon went for the surgery around 10am, the anaesthetist said with all four procedures and …

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Pre-Op thoughts 💭

I've been anticipating this operation for a long time. I've wanted it for Jaxon. I've pushed for it based on the intent to improve his quality of life. It's horrible to see your baby retching, heaving, vomiting their entire feeds and then falling asleep from exhaustion and being weak due to the lack of nutrients. …

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Two months in hospital: the low down on the upcoming operation and my babys big heart.

Getting on the blogs this week aren't I! It seems to be a recurring theme that I lay low on the blogs whilst it's all crazy and then as the crazy gets extreme I blunt out the past few months before anything else can happen. It just my life at the moment! As I ended …

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Great Ormond Street: Round 1

This blog post is all about my first experience visiting Great Ormond Street Hospital, for my (at the time) 5 month old son, as an outpatient for his heart problems. I take you through my thoughts, feelings, questions and anticipations before, during and after our appointment. PRE GOSH Jaxon has had appointments with a specialist …

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Two weeks out: In hospital I’m just his Mum

13/12/2017 Since being discharged with diagnosis' two weeks ago, I believe we've been neglected to say the least. It's a disappointing but a recurring problem that discharge is always rushed and incompetent. Leaving the hospital at midnight on what I believed was "home leave" for the weekend to return for complete discharge Monday, turned into …

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The Pros and Cons of tube feeding. Yes there are PROS!

Instagram followers, Facebook friends, random people on the bus..everyone has seen me tube feeding my son. I haven't hid it, I've haven't not posted his beautiful face because there's a tube stuck to it. I haven't saved feeding times for private spaces away from prying eyes. I'm a loud and proud mama to a tubie! …

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