Feeding Tubes and French Fries

There are so many things in life that kick us out of our comfort zone. Most often, your comfort zone just expands to meet the new. New kids, new jobs, new places, new friends; it happens, you adjust, you move on. When Miss Maisy was born my comfort zone was shattered. Changing a trach, giving shots, replacing an NG feeding tube, all on my own child. Once I even assisted in a procedure that as of then had not been done at St. Louis Children's. That was a good step for me, I had learned to read a ventilator and I was able to make sure her lung pressure stayed in my comfort zone (which may have been different than that of an overzealous CT fellow.)

Maisy has never been happy about the idea of eating. At first breathing just took precedence over eating, and then it was just too weird of a concept. Now, who knows, maybe its about control or fear, its probably about comfort. Maisy will eat yogurt, ice cream, and she will lick the salt off of french fries. But then she throws them. This is not only embarrassing in restaurants, it is messy at home. So for now we do gravity feeds because you cannot live on salt, yogurt, and ice cream. We are quite used to this hanging in our kitchen.
And I have become very good at being goofy or maybe just remembering my goofy side. Maisy likes to play with the tubes and bite holes in them so we get a nice fountain of formula. The best way to avoid this is to either make her laugh or sing her songs. She is very good at signing "more music" and as long as no one else has to listen to my voice I can sing Itsy Bitsy Spider in a wide variety of ways.
We have broadened our comfort zone. We aren't sure what to do about the flying food in restaurants and welcome any suggestions. But we do know what to do with a child who won't eat. Sing, karate kick, pull silly faces, tickle, and be grateful every day for the miracle that she is. Oh, and I know how to place a nasal gastric feeding tube if anyone needs one.