Questions about Nutrition

Q: Does Faith eat by mouth yet? What does she eat?

A: Despite our best efforts and hours upon hours of speech and occupational therapy sessions focused on getting Faith to take her feeds orally, she has stood her ground in saying 'ENOUGH!!!!!" The odd thing is instead of getting better she has gotten worse. During speech therapy we'd put Faith in her high chair and let her play with baby food (whcih she never liked..the texture of the food was too much for her...) After a while we put a little dab on our finger and put it on her lips. This puts Faith in distress and she starts gagging. It's even gotten to the point where Faith freaks out when she is put in her high chair because she associates it with feeding. After several bronchs it's been determined that her problem isn't all oral aversion related. (She has developed an oral aversion to food b/c of all of the negative stimulation she has had in her life...) her airway is still really swollen, which makes it difficult for her to swallow. We have been advised to hold off on the feeding thing until she is medically ready. This does not mean we've given up on the eating thing, we are getting her ready in other ways like showing her positive stimulation around her mouth.

So Faith takes her nutrition through a gastronomy tube placed in her stomach. It's really kinda cool. For those of you veterans that have been following this blog since the beginning you may remember us freaking out at the thought of our child receiving her nutrition from a tube in her belly. The g-tube is one of the best things ever to happen to Faith. It put so much stress off of her and us. If we knew then what we knew now it wouldn't have been such a delima in deciding to do it (hind sight is 20/20 w/everything huh?)

The g-tube has become such a part of her and us that we don't even think about how it's not the norm. Whenever I see a baby her age eating by mouth it all seems very strange to me (you mean they can eat ice cream?! Really?!)

To be honest the fact that Faith doesn't eat doesn't bother us either. It seems to really get other people though- whenever people ask about her it's often the top concern. We know Faith will eventually eat ( and if not...so what..) like everything she will do it in HER timing and on HER terms (such the woman, huh?)

Oh yeah and to answer the second half of the question Faith receives 180ML of a formula called complete. The formula is a mix of chicken, cranberries, etc. She gets feed over 45 minutes every 4 hours. At night she gets one 2am feed (and as you know sometimes the crib receives a feeding too!) ;)