About Me
Hi There
My name is Jess; I just wanted to share a bit of who I am and our story to give you a little insight into where Tube Feeding Support SA came from.
First and most importantly, I am a wife to a very patient and supportive husband. We have been married just over eight years now, and we are parents to a spunky, almost five-year-old little girl and a feisty 2-year-old little boy.
I am also a Registered Dietician, but I work for a pharmaceutical company and do not practise as a dietician. I have not practised in over ten years, but I am working in the dietetic field, and I am very passionate about food, nutrition and the impact that feeding has on your health and body.
Our tube feeding journey started when our little boy was six weeks old. First, he started getting very fussy around feeding time and refusing a few feeds here and there (I was breastfeeding then). Then, when he was seven weeks, he declined feeds entirely; I could not get him to take a bottle, the breast or even milk from a syringe. So by 2 pm, in fear of dehydration, I rushed him to the paediatrician, who admitted him immediately and ran every test under the sun to try and figure out why he would not eat. Finally, she popped an NG (Nasogastric Tube) in his nose, and at that point, I had no idea our tube feeding journey was still going to be another 16 or so months.
Our Tube Feeding Journey
I won’t bore you with the nitty-gritty details, but basically, our son had a severe dairy allergy which was misdiagnosed for six weeks. It caused inflammation of his oesophagus, which is very painful, as well as stomach pain and severe reflux. He associated milk with pain and did not want to take any milk orally. Because of the allergy, he also had a lot of damage to his gut, and so he was not able to absorb nutrients like a healthy baby and ended up with failure to thrive.
Unfortunately, due to misinformation and poor advice, we forced him to keep feeding through the pain, and we created a severe oral aversion which was made worse with the constant placing of NG tubes (He used to vomit/pull his tubes out regularly and getting them put back in was always very stressful).
So by 12 weeks, when we were referred to a speech therapist, the damage was done, and our son would not put ANYTHING in his mouth (we couldn’t even touch his face/ kiss his cheek at this stage).
Our speech therapist recommended we place a Gtube (Gastrostomy tube) which, although we did not agree with it at the time, ended up being the best thing for our son. We were able to remove the pressure of feeding on him and the trauma and discomfort of the NG, and he was able to receive the RIGHT nutrition for his growth and development.
I was able to wean him from his feeding tube at 20 months as he started taking enough food orally, and he has really been a little champ since then.
We did, however, learn on this journey that there is really not a lot of support for tube feeding parents, and we felt very alone and isolated on this journey. I was often embarrassed to feed my son in public, and I often questioned if what we were doing was actually best for our son. I stumbled across a mom who had a daughter similar to my son by pure chance, and although we have never met in person, I was in tears with her over the phone many times, and she was an amazing support for me during this journey.
So fast forward two years later, and I want to be that mom for you! I want to be here to support you and encourage you and cry with you. This journey is not an easy one for any parent, and I have created this website to support you.
Please do get in touch with me if you have any questions, problems or ideas; I would love to hear from you.
6 Weeks
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20 Months
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Today
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