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…


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.…


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…


Two weeks in hospital: Swapping to a neurodisability lead consultant & what is parallel planning?

It's a little delayed but here's an update on Jaxons two week hospital admission in February. This blog explains the reason for admission, gives an update on his heart at the time and explains parallel planning.