This girl!

This girl!

Friday, February 19, 2016

The blessings of having a feeding tube.

This past week was feeding tube awareness week, and I wanted to take a moment to reflect on what this journey has been for us and also on why it is important to create awareness. When some doctors and feeding specialists had suggested a feeding tube for Sophia, I refused to do it because I was convinced that I just needed to work harder and insist on making her drink enough. I thought I needed to keep trying out different sippy cups,  different flavors... There was no way I was going to open a hole in my baby's belly! Turns out I didn't really know a whole lot about tube feeding and I was afraid of the unknown. I thought that a feeding tube would be the result of me failing my daughter, crazy I know but that's what I was feeling at the time because I knew so little about the amazing possibilities that this procedure would give us.
Today, 6 months after her surgery, the tube not only became second nature to us but it also came to our lives at the right moment. In November, Sophia's seizure activity increased considerably and we had to add medications to control the seizures. She is now taking 4 different meds and I know that without the tube it would be a nightmare to try to give her the 6.5 mls she takes in the morning and the 18 mls  she takes at night. Sophia went from drinking, with a lot of difficulty, 2-3 ounces of liquids a day to getting 24-26! For that reason alone the feeding tube has been a life saver. Another benefit from having this tool is the possibility of getting the nutrition Sophia needs whenever she can't get it from eating by mouth. When we started trying new medications for her seizures, her body was having a hard time adjusting to them and she was extremely drowsy and sometimes she wouldn't wake up to eat. Other times it would be one of the medications causing her to lose appetite. Whatever the reason is for Sophia to have a hard time eating, we have now the possibility of feeding her through her tube and that not only alleviates the frustration but it truly gives me a great peace of mind.
Having a feeding tube hasn't stopped Sophia from doing the things she loves. She can take baths and play in the water like she always has and she is not going to stop going to the beach in the summer because of it. We still go to restaurants, playgrounds and visit family. The feeding tube is part of Sophia, it's no more than an extension of her digestive system and a tool for feeding just like a spoon is.
There's dozens of reasons why kids and adults have feeding tubes. Some have a lot allergies so they can't get the proper nutrition, others have a hard time swallowing, many aspirate food and liquids. A feeding tube is the reason why so many people can get the nutrients, medicine and fluids that their bodies need to thrive and reach their potential.
I didn't know all of this until Sophia got her feeding tube, I wish I had been more informed long before we made the decision to get it. The transition would have been less traumatic and I honestly think I would have done it before we did because it would have saved us a few trips to the ER for dehydration. That's why it's so important to create awareness about feeding tubes, people that are considering it need to know that it's not as terrible as it sounds and having one saves lives. The community in general also need to get informed so there's less judgement and more understanding. So here it is to the Feeding Tube Awareness Week, a picture of my Sophia being saved by one.

Medicine too thick and yucky? No problem!
Too tired to eat? No problem!

10 comments:

  1. And: You don't have to prepare food to taste!

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  2. Natalia,
    You're amazing, intelligent and brave!
    Thank you for sharing!
    Bambi
    So glad the feeding tube is working out for you all.

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  3. Natalia,
    You're amazing, intelligent and brave!
    Thank you for sharing!
    Bambi
    So glad the feeding tube is working out for you all.

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  4. I'm so glad the feeding tube is working so well! I agree that it would be hard to make a decision like that, especially when you were not well informed beforehand. Maybe you should look into teaching classes about it to other parents. I would certainly rather learn from someone who had first-hand experience with using one if my child needed one.

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    Replies
    1. You are right, it's better when you learn from others that have gone through the same situation. Thank you as always Dyanne!

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  5. Una ventaja importante es que tu siempre estas buscando como más ayudar a nuestra princesa, tal vez el camino inicial se vea complicado y difícil pero con el tiempo podemos ver las ganancias no solo en la calidad de vida de sofie, sino en como puede ayudarte a facilitar cada proceso.

    Que bien por las dos, las quiero y extraño muchooo

    ReplyDelete
  6. Kartal Masajsalonu
    Pendik MasajSalonu
    istanbul anadolu yakası, avrupa yakası, masaj salonlarımız 7/24 hizmetinizde

    ReplyDelete