Since birth, my daughter has always been fed via a feeding tube. It started with nasogastric tube, a small tube carefully placed down her nasal cavity to her stomach. A week shy of two years ago, at the tender age of 5 weeks old, Gia had surgery to place a more “permanent” surgical gastrostomy feeding tube (g-tube). Exactly six months ago she was only eating a small amount orally while attending the Seattle Children’s Hospital Feeding Clinic. Two and a half months ago we stopped giving Gia anything via the tube.
And on July 5th, the unimaginable happened. An act I’ve only dared to dream about; one we have worked towards since birth.
At 5:40 pm, Gia’s feeding tube was removed at home, her big sister lovingly holding Gia’s hands for the big event.
The second I removed the g-tube button was the first time I had ever seen my child NOT attached to some sort of tube, IV, or wires. I can now hold Gia around her waist without being conscious of her g-tube. I no longer have to be careful undressing her so I don’t snag the g-tube on her shirt. The concern of Gia ripping it out on her own is gone. I can let Gia and Anna play without fear of some sort of tube pulling accident. I don’t have to worry about cleaning the site around the tube or the possible infections that occur. The list goes on and on.
I cannot adequately express the joy, relief and all the other incredible complex emotions that I’ve felt on Gia’s eating journey and especially in these last few. I am so proud of her for accomplishing a feat which most of us take for granted: eating. I am ecstatic to see the tube gone, yet I am so incredible thankful that she had it. I am grateful for the people I’ve met on this journey, wonderful comrades in a tube-fed world, and indebted to their support and wisdom. I am appreciative of life and more sympathetic to others as my eyes are open to different world now. I also developed a serious a love/hate relationship with food.
But mostly I am confident. Confident that Gia is an eater. That she is capable of deciding how much to eat to survive. Confident that whatever the future will hold for her and us, we will be able to tackle it the best we can; together as a family.
It maybe seem that Gia’s eating journey has come to an end, that she has found new freedom the day after our country celebrated its own independence. But just like our country’s declaration of liberty, it is not the end.
It is a new beginning.
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