Tuesday, February 11, 2014

My Tubie's Tube - A Love/Hate Relationship

It is Feeding Tube Awareness Week.  

I have missed posting on so many different Awareness Week's that we are impacted by in recent months.  So many other very important Awareness Days & Weeks.  Honestly, for this post, the timing just worked out, between my thoughts and a little bit of time to jot them down.

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I HATE Ella's G-tube.  I hate that she needs a feeding tube.  I hate the constant nagging worry, every second of every day, that her tube will inexplicably come out, unnoticed... requiring a STAT trip to the ER and possible surgery to replace the button I hate.

I HATE that in nearly every touch I have with my child... every time I hold her, hug her, I subconsciously feel her tummy to make sure her button is still where it is supposed to be... where it is NOT supposed to be, attached to her.

I HATE that I know her trouble, to this day, with tummy time has to do with that button on her tummy.  After she has had time on her tummy I will pick her up and she will have red mark indentations on her tummy like someone who is wearing too tight jeans.  Can you blame her for not wanting to spend a lot of time on her tummy?  For not wanting to crawl, dragging negative friction against the button stuck through her stomach wall?  

Is this the reason why she is so delayed developmentally... because spending time on her tummy to work her core strength, her upper body strength, her lower body strength, because it causes her discomfort?  

I don't know, but I suspect it is to blame more than the professionals do... they say it makes no difference... I KNOW that it does. 

I hate that it's next to impossible for me to get a "random" (not her nanny) sitter for an evening or weekend because I can't be gone more than 2-3hrs max (depending on when I would leave), as she may need a bolus feed every 3 waking hours.  

I LOVE Ella's G-tube.  I love knowing that regardless of what she accepts in her mouth that I can ensure she gets her nutrition, hydration and medicine.  I LOVE that she does not need continuous feeds delivered throughout the day/night via a pump tied to a pole/backpack.  I love that I don't have to wake her to give her medicine (which is too often during overnight hours)... 

On a side note, I also LOVE that when I do wake her if I didn't put her to bed with her button extension inserted and tucked into her diaper tape, that she will wake slightly, look at me with a recognition and acceptance only for me and drift right back off to sleep (90% of the time).  

Whenever I bring on a new nanny or even sitter, I keep a spare button set to show them how it works.  I think that understanding that there is a little bubble of water inside her tummy that keeps the button in place helps caregivers feel comfortable with the foreign object on her tummy.  I orient caregivers that the button is fine, they don't need to worry about it but they need to be aware of it.  I tell them that it wont come out... but if it does, it is an emergency situation.  

I have intended to make my own video showing how to bolus feed Ella but have never had enough hands to do it - when thinking about it.  One of these daya, maybe I'll do it.  On the other hand... maybe we will be done with the tube before I ever get around to it.


Ella is eating well... chicken, baked potato, cottage cheese, mac & cheese (a whole shell).  She is finally taking (some) of her bottle from her nanny and even her snow-sitter (aka, occasional sitter), I just can't get her to drink more than an ounce or two from a straw/sippy cup.  My new mission is to get her off bottles and drinking enough volume from straw/sippy cups... while I've read a ton and have weekly Speech Therapy to help, I'm certainly open to any ideas readers may have on this topic.

A newfound way Ella enjoys tummy time (in her new playroom)…. Watching Baby Einstein's Baby's First Moves video, her favorite (and only) video she loves! She will even sometimes wave and roll along with the babies on the video!

Snow day in Charlotte today

Mommy thought she had a great idea for a makeshift sled… infant tub on a picnic blanket. Not so much, says Ella.  Creative ideas for sledding with a child who doesn't quite sit independently?


5 comments:

  1. It has to be hard to have such ambivalence about something so needed for Ella.

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  2. Hey, we have those same foam alphabet tiles! So good to read a post from you and see some photos of Ella. :-)

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  3. We have this toddler sled (bough it at toddler at the beginning of the winter). It does have some back support, but I'm not sure if it will go high enough up to support Ella (my son is fairly short). It does have a seatbelt which is nice too.

    http://www.amazon.com/Paricon-Toddler-Boggan-Sleds-Red/dp/B000LF8XSU/ref=sr_1_5?s=sporting-goods&ie=UTF8&qid=1392244697&sr=1-5

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    1. *clearly I hit publish before I meant to....it should say "bought it at Target"

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