It has been over 2 years since Adhruth got his feeding tube. Never talked about this topic a lot in open but then on the occassion of Feeding Tube Awareness Week (February 7 – 13, 2016), decided to publish about this.
Adhruth always had challenges with feeding (even before coming to Minneapolis). While in India, he was diagnosed with Lactose intolerance and had very less nutrient food replacements. Ragi kanji was his staple food for months together and he would not be able to drink a lot. I can clearly remember, Madhu would feed him with “Pallada” even he was over 2.5 years. Thankfuly, he got over his lactose intolrenance and that opened a wide variety of food options.
With Russell Silver Syndrome, he continued to be a very picky eater. Meal time turned out to be more challenging. Since he was unable to feed himself, he still depends on feeding him orally. During those times is what his nutrionist suggested us talk to a Paediatric Surgeon to understand “G Tube”. At first, when we listened to Surgeon, we were horrified. When I was young, my Grand Mother would say “easiest way to feed some kids is only if there is a zip in the stomach”. G Tube was just modern version of the same concept. As we were still debating if this is right or not, feeding time got more challenging and weight gain almost stopped. Finally, after one more session with the surgeon, finalized the date of surgery to fix G Tube.
November 1, 2013 was the date of surgery. That happened to be Diwali day that year. Since the next available appointment was over a month out, we went ahead with that date. Adhruth recovered from the surgery in 2 days. We first fed him in the hospital with the guidance of Doctor and we were very nervous. Over time, we got used to the process. Now, looking back, G Tube was one of the best things that has happened for Adhruth’s health.
At times, when Adhruth is sick all his medicines and water is fed through the tube. Every day, around 60% of Adhruth’s nutritional intake is now through the G Tube. We were initially nervous and uncomfortable about giving feeding through Tube in public. But over time, got very used to that. Yes, there is a daily, weekly and Quaterly maintenance on the tube, but over time it is certainly seamless.
There is one experience about feeding in public that will always be memorable for me. We were at Pella, for Annual Tulip Flower Show. It was time for Adhruth’s feed and we were in a Garden there. Adhruth was sleeping in stroller and we sat down and started feeding. Madhu was feeding and I was helping her and all of a sudden, a Gentleman who observed us, sat right next to me and put his arm around my should and stared talking “Just want to share a word of encouragement to you guys. You both are doing a great job for your son. This is certainly not easy, but want to let you know that a time will come when your Son will overcome it. You have taken the right decision. This is my 8 years old daughter who was in tube for 5 years, but is over it now. Carry on guys” and he walked away. We were almost in tears. This is the only comment I have ever heard when feeding and will always be a treasured memory for us.
Here is some pictures of us feeding Adhruth through G Tube last weekend.