|Feeding her penguin and she gets a bit of water.|
This was yesterday, some days are more complicated as she isn't on any medications or in a vomiting episode right now and she is hardly getting fed during the day in hopes of better oral eating. Sometimes she is on slow continuous feeds when her gut is really unhappy and is hooked to her feeding pump 16-23 hours a day. Some days are less complicated as she did have a point in time where she only got a small overnight feeding.
But really other than being tethered to her pump at night and some short day time feedings, Naomi is a typical little girl. We do have to care for her tube which involves keeping it clean and dry, changing it out every 3 months, which we do at home and then we have to order her supplies as they aren't things we can get at the drugstore.
|Posing for the camera! And no she didn't hurt her nose she just loves Band-Aids and attention.|