I have a whole lot of great syringes and recipes, experience and ideas that I’d love to share with anyone who is interested. Particularly if you’re in Sydney – give me a shout on email@example.com and I’ll be as much help as I’m able (and as you’ll let me).
- Spoke to pediatrician. Gary is onboard and has patients who have benefited from a BD. He put me in touch with some.
- Jess, Rose’s dietician was difficult to motivate at first but I think she just needed to see I was committed. Once I explained what I needed from her she was really supportive. She’s incredibly accessible… via email. Only complaint from me is communication style. It’s up to me what I feed Rose, it’s up to her to advise me rather than permit me. I know she knows this… it doesn’t come across in conversation 😉
- Spoke to Gastrostomy Nurse, Alison Kennedy who was incredibly supportive without being officially supportive. She gave me a lot of confidence to follow this path and is also really accessible via email.
- Speak to other parents feeding BD. We’ve found a fab ex-NICU mum who is a wealth of knowledge and is being so generous with her precious time!
- Decide which Blender (Blendtec vs Vitamix vs Thermomix) to buy (Vitamix gave Rose a blender). Super generous and it’s truly awesome, easy to use, powerful and the blends are going through her tube without an issue.
- Find recipes and work with dietician (or possibly pediatric wholefood nutritionist??) to ensure I’m providing Rose with a balanced diet. Google has a great new feature, you can search and compare different nutritional information. Rose’s dietician is also fabulous on email so we’re well supported.
- We’ve begun weaning!
Great book – would have been amazing to read pre Gastrostomy surgery! Complete Tubefeeding, Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhaar O’Gorman
Summaries – stuff from above resources that I’ve found useful so far
How we started
Oils (Olive, Flaxseed, Hemp)
Homemade Stock (chicken particularly)
Looking back at the response from my daughter’s caregivers when I raised BD I think they really pushed back as they know you need to be committed. I find BD complicated, expensive and time consuming but so rewarding and comforting and nourishing for my child. In this way I feel like it’s an extension of all that EBM I gave her and that makes me feel reassured. Once my daughter’s caregivers could see I wasn’t going to leave the idea alone they jumped onboard and shared lots of parent contacts and success stories they’d heard. The Homemade Blended Formula Handbook is excellent! My bible. But I also use a recipe book I used for my first two uncomplicated children and it’s been so helpful http://www.boffinsbookshop.com.au/books/9781741966787/wholefood-for-children-nourishing-young-children-with-whole-and-organic-foods. If I need a recipe to be runnier I just add a bit more stock or fresh coconut milk and I do play around with the recipes but it helps to have a starting point. I also like that all my daughter’s blends taste good. Often she’ll put one in her mouth. 3 months into blended diet and she’s eating almost 50% (sometimes more) of her meals orally then the rest goes through her tube. She had more solid food too… as snacks though. We are so lucky that it seems she will be successfully weaned from her tube one day… the best day..
Good blog for “normalising” tube feeding and the everyday: