Today is a very very special day.
Clara has graduated from surgical and is now under gastrointestinal team care. It’s less than six months since she was considered unlikely to survive… she’s the definition of a miracle.
Our focus now is on helping her grow, develop, and live a wonderful life. Bring. It. On.
We now have 12 hours off PN, and boy are we making the most of the time together. With Dean in Poland on a stag do, Clara and I spent time with friends: Saturday at a castle in Northamptonshire and Sunday at Chiswick House and Gardens. I always promised Clara we’d have adventures, why not start now?!
I’ve been training on sterile processes for home PN for two weeks now. It’s critical every attempt is perfect, and the daily morning session is definitely helping it become second nature. It’s amazing what you can learn when you put your mind to it.
11 days ago Clara was on 14ml of milk three hours apart, four times a day. We’re now on 50ml! And she’s tolerating well! The total amount of PN Clara is on was reduced last week as she was putting on a lot of weight. The challenge was to ensure Clara continued to put on weight, implying the milk was being absorbed therefore her gut was working well. The good news is Clara has gone from 5.9 kilos to 6.1 kilos in just four days! It’s working!
I’m looking forward to weaning Clara as she clearly enjoys food. I’ll be sharing our experiences, documenting what works, and what doesn’t! It’ll be test and learn with my little short gut kiddo.
Home looks closer than ever before.