So in a nutshell
Five days after coming home from NICU, we took Ruby to the local hospital as she was lethargic and not feeding (it was Fathers Day)
She ended up staying there hooked to IV antibiotics for 5 nights for a high fever and unknown reasons. Not even really sure if it was to do with CF.
I cried for the first time when she had 4 lumbar punctures (3 unsuccessful) to rule out menengacoccly. Spelt that wrong I know!
Dr casually pointed out that she has a systolic heart murmer and may need heart surgery. Westmead later told me she will probably grow out of it, which she has.
I realised during this time that CF really is a free pass to be paranoid of sickness and demanding of hospital staff.
The only other hospital visit was for what ended up to be constipation. Another CF lesson. HYDRATE HYDRATE HYDRATE!
You can read about it here:
A Common Cold?
I can hear Ruby coughing in her sleep, I hoope I won't have another admission to blog about...