Saturday, May 17, 2008

The Joys of Tubefeeding

I go through cycles with Finleigh and her tubefeeding. Sometimes I don't mind it, sometimes I just want to chuck it all away. Who'd have ever thought that I'd covet bottle use? Especially with my struggles to breastfeed my children and the tears I shed the first time I gave in and gave Willem his first bottle.

Anyhow, I've been wanting to take a video for a while of Finleigh having her G-tube put in. I think it'll be a good thing for her to see when she's older and we're past all this. (I've explained most of her issues in the past I think. If you want to understand more what's going on with her, click on the Finleigh labels and you can read all my rants and updates regarding her and her medical issues.) This morning we finally took said video and I thought I'd share it.

video

We tube feed her regular old baby formula 4 times per day. We used to leave the tube in all the time, but she's gotten very good at pulling it out, so now we just insert it each time she feeds. She's a really good sport about it and our home support team was really impressed when they saw how well she took it. We're lucky that she rarely cries or screams when we put it in. After this video was taken this morning, she pulled it out about halfway through the feed. In it went again to make sure she got all her fluids. I try to keep her busy with toys or reading books, but sometimes I have to put socks on her hands (which I hate to do with her already delayed development). At bedtime, I use a 60 ml syringe and hold her during her feed so we still get our snuggle time.

When we first started the tubefeeding in August, we were told it would likely only be a couple months. Almost 10 months later, we're still at it with no sign of stopping. I'm just glad that we're allowed to give her regular solids and thickened liquids now (when she'll take them). The patch you see on her cheek is Duoderm. It protects her skin from the tape. We usually leave it on between feeds for conservation reasons, since it's single use. I do take it off for special occasions or when it gets too worn.

So, that's what tubefeeding looks like for us.

In other Finleigh news, I discovered at her last physio/OT appointment that she can use riding toys. It was very exciting for me.

Natey would rather be riding it himself, but he settles for pushing it - though not as fast as he'd like.

4 comments:

  1. wow... she really does take that well! I think I would be freaking out if I were her!

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  2. she is an awesome little girl!!! Of course, it helps having awesome parents!!

    love the riding pics!!!

    and yah baby! lets get those May goals!!

    xo

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  3. Well done Manda! She does great, and she looks great. She is growing so quickly.

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  4. Amanda I think you are doing an awesome job. Of course Fin is so relaxed she has such an easy going and great mom! Good to see her having fun with her brother.

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