This past week was another episode of hospital stays and doctor visits. Kendall had a G-Tube inserted on Thursday afternoon and was released from the hospital on Saturday morning. I stayed with her as she recovered from the surgery. The G-Tube is a tube that is used to feed her directly to her stomach. This replaced the NG tube that went down her nose.

After the surgery, she was in a lot of pain and needed some morphine to calm her down. She slept well through the night and woke up in some pain but in a good mood over all. Friday was spent getting her on a pattern that allowed her to take fluids regularly through the tube and adjust to the new way of eating. She moved along well according to the doctors requirements and she was able to leave Saturday morning. She was 10 lbs, 5oz when we were discharged.

So, now the plan is to find a pattern that allows her to maximize her food intake without throwing anything up. The first day back, she did throw up a few ounces, but has been good ever since. It is tough on us as only 2 months ago, she was eating on her own at a level that is more than what she is taking right now. We are baffled at why this is the case and still have some questions to be answered. Every test so far has come back negative. We thought that maybe it was that her system wasn’t absorbing the way it should, but the biopsy came back normal. We thought maybe her stomach was too small and the doctor said that the stomach expands according to the amount of food she eats and that it is unlikely that this is a problem. We have a number of follow ups and additional consultations with therapists and specialists and will continue to search for answers. In the mean time, our focus is on providing a positive experience for her at every feeding. The times in the past that were traumatic for her may have given her an aversion to eating and we have to do our best to reverse that negative experience she associates with eating.

On a positive note, she continues to develop and seems to be more active as she takes in more food. She is very alert and engages with us quite a bit more than she has in the past. Her strength has increased and her motor skills are developing by the day. She knows that her hands can grab stuff and loves putting her feet up straight in the air.

She is so amazing and we love the great things she brings to our life. Outside of not wanting to eat, she is the best baby we’ve ever been around. We still can’t get enough of her….

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