Hi everyone. This is Evelina. She’s ace.

After what doctors call a ‘stormy neonatal period’, Evelina has had a feeding tube since birth. Those first 6 weeks of her life in NICU were terrifying, we were told several times that we wouldn’t be able to bring our baby home and it was time to say goodbye. Never one to do as she’s expected, little miss stubborn had other ideas (my hero!).

She had a ventilator keeping her alive for the first 8 days, sustained a significant brain injury and had some really nasty seizures. Due to all of that, feeding was never high on the list of priorities. 

Evelina has been fed via a line into her tummy, TPN (a long line into her arm), an NG tube (in her nose, down to her tummy) and now she has a little button that goes directly into her tummy (gastrostomy). Possibly every way to feed other than by mouth!

Not for want of trying; we’ve seen a Speech and Language Therapist since E was born. She has a safe suck and swallow (which means she is not at risk of aspirating - taking fluid into her lungs) but first she lost the newborn instinct and then she had such a severe oral aversion that we couldn’t get near her mouth.

We have worked every day to de-sensitise her to her mouth and she will now open her mouth (amazing!) but the coordination and skills to eat are not there.

Despite being tube fed we have tried to give Evelina the best. I exclusively pumped for 7 months, day and night, every 2 hours for 30 minutes, to build up Evelina’s antibodies after such a dramatic launch into the world. Since she had her button fitted in May 2019, we have given her a blended diet. This is just real, home-cooked food, calorie controlled and blended to be put down the tube. It’s a lot of hard work and preparation but we would do anything for Evelina and she is thriving on it. Also it’s always funny when you’re out and you’re pushing a bit of salmon thai curry and quinoa down the tube, whilst we’re eating a Tesco meal deal. She’s too fancy. (But high calories, good fats, low volume - it’s been a learning curve for sure!)

We’ve always managed E’s medical needs since being in NICU, being trained to pass the NG tube and button. It’s just all part of Evelina and we’re ok with it. 

That being said we are so excited that Evelina has been accepted into an intensive eating school in Austria in June 2020. It’s called No Tube and has had great success in teaching children with similar neurological issues how to eat and to wean them off a tube dependency.

Our dream is that Evelina can one day eat by mouth and one day enjoy Sunday Roast or birthday cake! 

We have been overwhelmed by the love and support everyone has for Evelina. Thanks for joining us on our journey.