It's feeding tube awareness week.
I'm positive that without a feeding tube our life would not be as good as it is. If we hadn't gotten a feeding tube, Lydia may still have a tube down her nose into her stomach. Without a feeding tube, I'm sure we'd be in a failure to thrive situation. The feeding tube was a very important step to giving Lydia a chance to gain weight and outgrow her laryngomalacia on her own. In the end we still needed the trach, but I was so glad Dr. Vaughan gave her a chance and then talked us into it. He was a blessing, a straight shooter, and had a connection with me that no other ER doctor did. He was a solid voice of reason when battling whether or not to get the trach.
Of course I'd rather Lydia have learned to eat from a bottle, then move on to baby food and eventually whole food, just like most other kiddos. I accepted long ago that is not our path and I'm doing all I can to give her the best nutrients through her tube. It's still frustrating when we encourage her to eat dissolve-ables and most of it ends up on the floor. At least she's interested in food and wants to explore and try things. She does not want to be fed from a spoon, she doesn't know she's supposed to drink from a cup, she has a delayed swallow, she has a killer gag reflex and she breaths through her trach which lessens her sense of smell and therefore taste.
Yes, I want her to be ruining her appetite with fruit snacks and candy. Yes, I want her to ask for sips of coke and juice at bedtime. Yes, I want to order mac and cheese or hot dogs off the kids menu for her. But for now we don't. For now we feed her through her tube, with her pump, in an adorable giraffe backpack, at regularly scheduled times, 5x a day. Part of me hates it all and then other part takes pride that she has the best diet anyone could ask for. It's well balanced, full of nutrients, and measured precisely for Lydia and what she needs.
The feeding tube. The Mic-Key button. The Enteral Infinity pump. These things saved Lydia's life. Lydia would not just eat enough food if we withheld her blends from her. She physically can't eat like you and I. She doesn't know how. She does get hungry and signs for food. She does know when it's time for tastes and she'll tell you she wants more. There is an end to this story. It's not by the time she turns 2. It's not by the time she starts pre-school. It's just when it happens. It will happen.
