Feeding Tube Awareness Week!
Ryker had his first feeding tube less than 24 hours after his birth to get his blood sugar up and give him a carefully calculated formula of electrolytes and other nutrients that was calculated via a blood sample every morning. He was given a NG Tube (nasal tube) in the NICU and set up with an Infinity Pump. We waited until Ryker was much bigger, stronger and out of the winter illness season before we did the surgery for his G-tube. His G-tube goes directly into his stomach and has a “Mic-Key” button style that is a small button with a ‘lid’ of sorts that opens and allows for an extension to be attached. Both the NG and the G-tubes we changes ourselves at home.
We have a closet full of equipment solely for Tubie care… Duoderm, Tegaderm, Tubie Friends stickers, Cavilon, Mepilex, extra extensions, extra Mic-Key buttons, you name it we probably have it! Ryker was initially unable to consume anything orally… mainly due to his excessive sleepiness and hypotonia. Eating takes a LOT of muscles! Even today, if he does well in his speech therapy sessions with feeding, you can immediately tell when he becomes too tired to continue. His feeding capabilities today include a full Stage 2 tub (4 oz.) of baby food, a “banana milkshake” concoction that is banana flavored formula mixed with some rice cereal to thicken it through a sippy cup, mashed potatoes, cheese balls, avocado and more. While he has made great strides towards his oral consumption, he is simply not able to consume nearly enough to keep him healthy and hydrated and his primary means of feeding is still his G-tube. Without his feeding tube, Ryker would not be alive and thriving!
Big Bro Chase celebrated Feeding Tube Awareness Week by getting his very own Teddy Bear with a ‘boo boo’ on his belly just like baby bro Ryker’s! Aunt Sara was able to get him a “tubie bear”… a special teddy bear with a G-tube that looks just like Ryker’s.