Featured

Pre-Op thoughts šŸ’­

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.…

Featured

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…

Featured

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.

Featured

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…

Featured

Happy Valentines: Make Love, Not Babies (unless you want to, then go ahead skip this blog!)

Those posts "everyone is having babies and I'm over here like.. *insert current situation (options include swaddling a bottle of alcohol, taking flights or enjoy sleep)*" used to be me! Well if you want to keep that freedom, or if you're loving motherhood but don't want five under 5's (exaggeration I know), you're going to…

Featured

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!…

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…

Two weeks out: In hospital Iā€™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…