Friday, January 2, 2015

Cute as a G-Tube Button

This morning while cleaning and doing laundry Christina was crawling (more like moving yoga poses) around on the floor. While she was playing her shirt lifted a little and revealed her button, her **Mic-Key button. It has been one year since she got her feeding tube. As her mother, I think it's a cute little accessory, just like her earrings. I have a hard time even remembering her without her button! Besides being cute, as a reflect, I see that her feeding tube has been such a blessing.


In utero, Christina was attached to the best "feeding tube" and even then she was still diagnosed as failure to thrive. When she entered this world she still struggled and struggled to gain weight.When she was in the NICU and after she was discharged, I pushed back against her getting a g-tube. We worked so hard with her to be able to eat from a bottle, but that ultimately became the issue, it was too much work for her and she began losing weight. So we decided for her to have surgery (which was scary all on its own since she only weighed six pounds!) to put in a g-tube. In the beginning, I was not a fan of her having a feeding tube. In the hospital they train you in a very medical way of how to administer a feeding. I am a quick learner and got it right away, but it was awkward and annoying and sooo impractical in the settings and ways I was taught. There was no teaching about how to do this if you are at the store and you need to feed your baby, or when your three year old wants to help, or what clothes your baby should wear, etc. It took some ironing out and just figuring out how to actually tube feed your baby in the real world. Now that we have a great handle on her tube feeding and now that Christina is thriving, I am able to see her g-tube as a blessing. Without it, I am certain she would not have made it. She would have withered away and ultimately died. Modern medicine is a blessing!

The reason why today I am especially grateful when I caught a glimpse of her button poking out is that this week our family came down with a severe cold/flu or something equally horrible. Christina went a 24-hour period where she was unable to keep any food or liquid down. At close to a year and half old she only weighs 12 pounds and every calorie we give her is measured and she cannot afford to ever have a deficit and especially not to be dehydrated as she was. She ultimately had to be hospitalized in order for her to get an IV and anti-nausea medication into her system. Even though I hate hospitals, I once again was so grateful for modern medicine in our lives. With help from the IV to give her fluids and the anti-nausea medicine, I was able to administer much needed fluids and food through her feeding tube. She was so weak and sick that without the feeding tube, I am scared to know how she would have been. Her feeding tube enables me (and Brian) to give her needed nourishment, which we were unable to do prior to her button placement.


Such a cute girl! And look at her opening her eyes in the daylight! Look at that sunshine pouring in! Very impressive for our nocturnal baby girl!

** For clarification, feeding tube, g-tube, button, Mic-Key button, gastronomy tube, etc. are all essentially interchangeable since I bounce around and call it different things at different times.



2 comments:

  1. Christina I don't know you but I wanted to tell you how much you touched my heart. What a georgus little girl,a true little sunshine :)
    Please keep your photos comming!!
    With all our love
    Kat,Paul grade and William in Australia

    ReplyDelete
    Replies
    1. Kat -- It has been neat to see how my sweet little girl is able to touch the lives of others! Thank you for your love and support!

      Delete