This week is Feeding Tube Awareness week - before I had Grace I guess i was very unfamiliar with a gtube in babies. But alot of CP kids as well as preemies who have a hard time sucking get a gtube early so they can get feeding.
Grace's story is slightly different - yes, she was a micro preemie but she was taking the bottle when she was little because she had a golf ball size hiatal hernia; so she was throwing up every time she ate. Some of the Neonatalogists would say she was a 'pukey' baby and some would say 'give her some time' (this was before they realized the hiatal hernia). Remember that we were in Maine, 100's of miles away from home with not a big support of family and friends. The Neo's were great, but we were like fish out of water. Emotionally it was a very trying time, when they came to us to do surgery on her when she was just 3 months old and 4 lbs, we were very scared; never mind asking us at that time to consider putting in a gtube to help with feeding. So of course, we did what any parent would do and said 'Ok.'
Looking back at that, I'm not sure if we would do it again. Once the hiatal hernia was fixed and she could swallow without issue, she started to take the bottle (as the pump just went off as I'm typing this.. how ironic!).
I don't know.. to know then what we know now.. right? How many times do we say that!
I'm not going to finish my thought.. it was interrupted for a reason. Let me just say that in one way the gtube has helped Grace grow and gain weight; it's helped and is easier to give medicine when she is sick. But in other ways, it's been somewhat of a crutch not to eat or learn to eat. Now at 8, she has to be trained to eat all over and some days are easier than others. The fact that she is interested in food is wonderful. Baby steps!
Thanks for reading!
pattie
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