You’ve got the news: Your child needs a feeding tube to survive. Your world is spinning. You don’t know what your future holds. And you feel so alone.

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During the first year of your child having a feeding tube, there can be a lot of stress, anxiety, and guilt to work through, as well as a lot of information to remember. It's okay to feel unorganized during this new life transition. From hospital to home, we're here to help make you more confident and more comfortable as you navigate the first year of the feeding tube journey. 

 

Some children are born needing a feeding tube, while others may require one later in life due to a neurological diagnosis, a swallowing disorder like dysphagia, or cancer. The initial days post-feeding tube placement are often spent in the hospital, where you might find yourself hunched over your child's bed, surrounded by medical equipment. Doctors and specialists will use terms you have likely never heard, and some may give you news you don’t want to hear.

 

The day to go home will arrive, a moment filled with mixed emotions – where suddenly you wish you had the comfort of the nurses, machines and monitors back again.

 

The initial days at home can be daunting. You might feel isolated, stressed with questions like: what do I do if the feeding tube comes out? How can I comfort my child when I don't understand the things they're feeling? Then comes the persistent worry: what does the future hold for my child and our family?

 

Eventually, your life will find a routine. Therapies will become manageable. Your schedule with doctors, specialists and therapists will even out. And you will make it!

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And never, ever forget that so many have been there before you. They can provide knowledge, support and an understanding ear. Please don’t hesitate to reach out to us as we can help you connect with resources both locally and nationally.