MommaMalia Blog: Tales of The Feeding Tube

Meet the Momma and the Malia

Malia

My daughter

My husband and I

Trying to get a picture with my entire family is like pulling teeth. LOL This is the best one I got. They look so excited to be taking it huh? HAHA

Found another pic of my family. This one is not so bad!

Malia on CHOP Feeding School graduation day

Hello everyone,

My name is Tianna. I live in Pennsylvania with my husband, step-son, daughter, two dogs and a cat. I moved here in 2003 after meeting my wonderful husband on vacation. We finally married last year. I love to scrapbook, video editing and traveling. I also stay at home with our 3 year old daughter Malia.

Malia was diagnosed with Failure To Thrive in June of 2009 at 2 1/2 years old. She was 21 lbs at the time and placed on a feeding tube a few months after her diagnosis. We have been living with the feeding tube and FTT ever since.

Malia has been through a lot of tests and even an endoscopy to determine why she was Failing to thrive. We were finally diagnosed by a feeding team that our daughter’s FTT was due to Feeding Difficulties and Lack of Interest in Food.

I began blogging about our experience right around the time that Malia was getting the feeding tube. When I first heard about FTT I had no clue what it was. I didn’t think my daughter had a problem with growth. Neither did anyone else around us. We all assumed she was just ment to be small. I didn’t think much of it until we were told Malia needed to have a feeding tube because she was not taking in enough nutrition on her own in order to grow correctly. I was floored. My world, suddenly, got turned up side down. Shoving a tube in my daughter’s nose and forcing food into her was not my idea of a good time…for either of us. It is safe to say that I was scared, nervous, panicking, getting anxiety and worrying. While my husband and I were deciding wether to go with the feeding tube I decided to look up some information on feeding tubes. Just to get an idea of what we are going to be going through.  Most of the information I found on the net, including video, pertained to infants. What I wanted to see and read about was what feeding tubes were like with toddler aged children. I couldn’t find much of anything and it was driving me nuts. So I thought to myself, if I can’t find anything then other people can’t find anything. And if I am worried and looking for information that isn’t out there then other people are having the same problem. So I decided to put our experience out on the net so that others like me could find it and hopefully it will help them.

I hope you enjoy my FTT/Feeding Tube Blog.

Hugs,

Tianna

4 Responses to "Meet the Momma and the Malia"

Hello – so happy I found your site. I have a VERY similar story. I have a daughter that is 2 1/2 and doesn’t eat. We have seen an array of doctors and they cannot determine why she isn’t interested in food. I haven’t read all of your journal entries, I just skimmed through a couple and ready your information page, but from what I’ve seen, our daughters are almost identical. I feel your frustration and know what you are going through. We keep a caringbridge page for my daughter Allie. You can check it out at: http://www.caringbridge.org/visit/allieberndt
I will be reading your journal updates tonight to get the full picture but I would love to get in contact with you so maybe we could discuss our situation and maybe shed light on some of our struggles. I have been searching for a child similar to my Allie and it has taken me 8 months but I think your little girl is just like Allie. Please check out our caringbridge and let me know if you would like to talk. I read your latest post about mealtimes and I know exactly how you feel. We live in Wausau, Wisconsin – where do you live?

I saw you on Facebook I will contact you there. I live in Philadelphia, PA! Look forward to talking to you!

Hi there,

I found your blog through Jodi’s blog…we also have a similar daughter named Ava. We’re at thekelleygirls.blogspot.com
Would love to add you to our blog…

Stephanie

I saw your blog and I’m so glad to hear I’m not alone. I have a 4 year old girl with celiacs disease and ftt. She weighed 26 lbs at 4 so she got a gt in march and were just starting on a new journey….it’s difficult to find a lot of support for my daughter.. I wish she could meet another girl like her with a gtube….

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