As most of you know, we have been dealing primarily with GI issues for the last few weeks. Since her GJ tube surgery/gallbladder removal, we have been working (slowly) to get Emma back to her goal caloric intake. We achieved this goal on Monday by running formula continuously in her J-tube (intestines) 24 hours a day and bolus feeding her puree foods in her G-tube (stomach) three times a day. She did well with this on Monday into Tuesday afternoon; however, Tuesday afternoon the GI brought in a different "formula" for Emma to trial. This formula is made of actual organic food and looks like a thin baby food puree running through her tube. In theory, this would be more age/nutritionally appropriate. Emma did not appreciate the change and started retching/gagging during the night into the morning. We both got very little sleep, so she has been exhausted today. After talking to the team this morning, we have decided to go back to her old formula for awhile and slowly integrate this new formula after we see a steady few weeks of weight gain.
Speaking of weight gain, my skinny Minnie is not gaining weight. She is so skeletal it is sad. Her poor little arms, legs, and face are basically skin and bones. Since surgery (GI) she has had a major weight/fluid shift from being fluid overloaded to now very dry. We will have a lot of work to do when we get home to pack on the pounds before her next surgery.
As far as her heart is related, she is doing well. The atrial septum area that they removed the membrane from is still wide open and the pulmonary veins that they can see look good as well. There is one pesky pulmonary vein that they are having trouble viewing, but because everything else looks good, the cardiologist is not really worried.
Once again, to all of our wonderful family, friends. and loyal blog followers, THANK YOU so very much for all of the support, encouragement, cards, gifts, messages, etc. We are so blessed to have such an outpouring of support.
1. Emma can start gaining steady weight and muscle.
2. Emma's heart function, pulmonary veins, atrial septum, etc continue to function properly.
3. That Emma can regain her strength and activity level.