First off, Ivey is doing AWESOME! She is happy and playful. Having the new ‘button’ instead of the G-J tube hanging from her tummy at all times has given her some freedom that she has never had. She is adjusting to her new palate. It is fun to watch her check it out with her tongue. Unfortunately, she is wearing welcome sleeves for two weeks to prevent her from putting her fingers in her mouth. Welcome sleeves velcro around her arms to prevent her from bending her arms at her elbows. Ivey also has to rinse her mouth with Nystatin twice a day. This is a medication to prevent a fungal infection in her mouth. Tastes absolutely terrible-I tried it. Imagine not getting to eat and the few things that do go into your mouth tasting like some thing you apply to your feet. Ugh!!! She is a little trooper. Happy as a lark.
A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU. My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself. That decision did not come lightly. Another hole in her. Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival. Literally to give her a chance to live. A permanent decision. A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...
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Haven't visited in awhile, but I still pray daily for your sweet family.
I am so happy for ya'll!