This girl!

This girl!

Thursday, August 6, 2015

So a feeding tube it is.

In a matter of eight days I went from "I can't believe we have to put a little hole in my baby's belly" to "Can we get the gtube today please?!" One of the several reasons why we made the decision to get a feeding tube, is that lately Sophia is not eating like she used to and she is choking drinking her water more often. This week has been especially hard, it's as if Sophia heard about the tube and gave up eating and drinking! She opens her mouth when I offer her water but then lets everything dribble out. Eating solids is not going great either, she doesn't want to eat or sometimes I have to puree the food,which was something that we had had some progress with as I was using just the fork to smash her meals instead of the food processor.
It's so frustrating for me and I am sure it is for Sophia. When she doesn't swallow the water, or when she coughs a lot with it or when she doesn't open her mouth for the spoon or even when she does but gags on it, I worry so much and all I can think is about dehydration, kidney stones and that she is not getting enough nutrients, nutrients she needs to stay healthy and keep working on reaching her potential. I start pushing the fluid/solid into her and I feel like I am in her face all day long and that of course she doesn't like, and  very rightly so.
Same thing with her medicine, which we give her three times a day and sometimes she doesn't swallow the whole dose down. That's why I found myself several times this week wishing we were getting the tube sooner than what they told me the process will take. Now I totally understand why this is the best thing for all of us. It will make everything so much easier and we'll be able to concentrate on the motor skills without the pressure and the worry.
One thing I feel good about is that I found this Facebook group that gives support to parents of kids with feeding tubes. I "liked" it and posted a question basically asking for tips and the response was overwhelming! I got 71 messages!! I took the time to read them and to reply to them all, every one of them agree that it's scary in the beginning but it becomes second nature pretty fast, and also (and this is very good to know) all of them say that getting a tube for their kids  was the best decision they could have made. Reading those comments and words of support made me feel like I am not alone and more importantly that I can do this!
So now I can't wait for the surgery and the first few weeks after that to go by fast, so we can have one less thing to worry about.


7 comments:

  1. I'm so glad you found a support group on facebook! For every question you have, there's probably someone out there who has already been there and has the answer for you. I'm sure the feeding tube feel like a step backwards to you, but maybe it's just what is needed to help Sophia step forward somewhere else! Prayers for a safe surgery

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    1. It did feel like a step backwards but i know sometimes it's necessary to go even further. Thank you Dyanne!

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  2. I hope the feeding tube works out. That way, everything can get in.

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    1. Thank you! I think it's going to help!

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  3. So glad you found a support group on Facebook. I am a member of a number of Facebook support groups for my kids needs and have made a number of friends through them that I can rely on for support.

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    1. Yeah, Facebook has been great as far as finding parents that go through something similar, it makes us feel less alone!

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  4. Amiguita:

    Es una decisión difícil, pero como todo lo que tu hagas por Sofie, siempre sera en busca de un mejor bienestar y una mejor calidad de vida para ella, así que adelante, ya veras como las cosas mejoran poco a poco y se facilitan tanto para ella como para ustedes.

    Un abrazo y un besote gigante para Sofie

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