Eating Is Such A Chore!

Never would I imagine writing these words "eating is a chore".  From a foodie family standpoint, eating is never a chore. It is a pleasure.

Kalista has made large strides in the past week in the food department, but for her.. eating is a chore.  We started last Wednesday with the introduction of breastmilk by bottle  The initial amount given at each feeding was 5 mL and has slowly increased up to 60 mL (about two ounces).  Pretty good for never trying anything in her mouth besides tubes and more tubes. We are so proud of her!!

Because of the "O", her stomach was involved and in turn gives her reflux.  This causes her to be more gassy and food easily comes back up the way it goes down. In the past day, the reflux has gotten worse and she is eating less than expected.  The medical team decided to take action. She is now back to the nasogastric (NG) tube- the tube that runs from her nose to her stomach.  Kalista still gets the bottle or is breastfed during feeding time until she's "done" eating and suckling.  The remainder of her milk gets infused to her stomach through the NG tube so she takes in her full 60 mL at each feeding. We are all hoping that she will continue to tolerate more volume of food on her own and be rid of the NG tube....but for now, it will do.

Her "O" is improving slowly.  Dr. Saenz, our surgeon, is happy with the way things are going and we are on the right track.  Tissue growth has begun and is continuing to grow slowly day by day.  The skin is the largest organ we have, so it's not surprising how slow it grows.  The ultimate goal is to have skin tissue grow over the remaining part of the "O" that did not fit in her abdomen and do surgery later to improve the cosmetics of the area.

Well folks, it looks like it may be awhile before the munchkin comes home.  We hope it'll be before the summer ends.