It’s amazing what you can learn and how quickly once you are plunged (no pun intended) into this strange world of tube feeding.
Within weeks we were able to re-pass Amy’s NG tube, we would spend our days cutting up duoderm and reapplying it to her face; we would spend time researching good creams to use to prevent the blistering on her cheeks.
It seemed to me an amusing right of passage that all tube feeding parents WILL accidentally feed the carpet or the wall at least 5 times per week.
Equally it was inevitable that you could leave a g-tube clamp open and give the cot a nice pump feed of formula… totally immersing your poor sleeping child in a huge puddle of milk!
Indeed an unexpected amount of slapstick comedy entered our lives as we began to tube feed.
In October Amy had gastrostomy and fundoplication surgery. This was not a decision we took lightly but we knew it would be best for our little girl who had suffered terribly with gastro oesophageal reflux disease in spite of the copious quantities of anti reflux medication she was on.
Almost overnight she turned from a very irritable and inconsolable baby into a happy, interactive, interested, and relaxed, happy little girl.
It was like a dream come true, all those months of worrying we were doing something wrong seemed to diminish as we settled into this new world of easy living!
It soon became apparent that Amy couldn’t tolerate pump feeds very well.
We found ourselves very isolated with 10-12 hours of constant pump feeding per day and even then she would retch and need a lot of venting.
It was then that the wonder of Facebook introduced me to some forums about “blended diet”.
Before we knew it we had been bought an expensive blender by my parents, and we had a huge base recipe packed full of high calorie but wonderful foods for our daughter.
A kind lady spoke to me on the phone at length about how they did blended diet for their daughter and I was so anxious entering this new world of blended feeding!
I bought some books and read a lot of case studies to ensure Amy’s safety was held paramount.
The blended diet went so well for us, it gave us our lives back and we even got our lovely dietician on board!
Initially I was nervous as I have heard of parents get into altercations with their professionals about the blended diet as it is not currently NHS approved.
For us it was an obvious choice – through careful research and lots of guidance from others we had made it so Amy retched less, got REAL nutrition and not just chemicals, and more importantly… actually gain weight!
Sadly Amy’s fundo came loose when we were advised to try her on milk thickener and this caused her to vomit. We are currently awaiting a surgical review and have had to reduce the blended feeds a little.
I know a lot of people are discouraged from doing the blended diet but only you know your child and you know what is best.
I am so glad we listened to and followed our instincts and continue to fight for what is right for our little girl.
We are also very fortunate that we have such a dedicated and supportive group of specialists backing our decision. It has not been easy adjusting to life of no oral feeding.
Sometimes I do get very sad that we have been denied such a basic part of raising a child… the bribes of biscuits for peace, prizing toys out of your childs mouth, cleaning up thrown food from everywhere.
Whilst pregnant I constantly found myself thinking of breast feeding and eventually baking with my child and being cheeky and eating cakes together!
I realise now eating is not the be all and end all… We hope that one day Amy will be able to eat orally and work hard with our speech and language therapist to try and make this happen.
We are slowly but surely training up various family members so we can get a little extra support and everyone is doing fantastically.
But at the same time, our little girl is growing into a beautiful little monster and that’s all you can ask for.
We are so incredibly proud of our brave daughter for enduring so much pain and so many challenges, she is truly an inspiration to us all.