MommaMalia Blog: Tales of The Feeding Tube

It’s Ok to Feel Sick and Tired

Posted on: January 27, 2011

If you have been following the news you know that the East coast just got hit with A LOT of snow. So I am taking this wonderful snow day to up date my blog.

I am realizing really quickly, that when your child comes off the feeding tube only half of the battle is over. There is still a LONG road ahead. Trying to keep the feeding tube from coming back is tough. The Tube gives you a crutch. It allows you to to feel confident that your child is getting the nutrition they need no matter what. After the feeding tube is gone, you don’t really know if they are getting enough. You can get their weight checked and/or you can keep a log calculating daily calories all in hopes that you don’t see a dip in their weight again. Even with all of that, there will always be a sense of worry and doubt hanging over your shoulder. I don’t think that will ever go away.

Last time I wrote, I shared that I felt like I was in a rut. The battle against FTT was wearing me down BIG TIME!!!! All that worrying and doubt was getting to me. I blamed myself for my daughter’s slight weight regression.  However, I finally realized that no parent is super human. We all get tired and run down. Carrying your child’s FTT/Feeding Tube situation on your shoulders is NOT AN EASY THING. It is taxing. It’s tough. It sucks!!!! There is no easy way to say it but is not a fun situation to watch your child go through what they are having to go through.

I just want to share that if you ever feel run down…sick and tired…frustrated with your FTT/Feeding Tube situation….TRUST ME…your not the only one! I have been there. Heck, I am there.  It is not easy having to flick the on switch all the time and always be on top of things. What I am trying to say is that it is ok to feel tired. It is ok to feel run down. Don’t feel ashamed. Don’t blame yourself. Accept help from others. Take time to relax. Vent if you have to. Vent to me if you need to. But never give up. Keep fighting the fight.

 

Hugs,

Tianna

 

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4 Responses to "It’s Ok to Feel Sick and Tired"

This is just what I needed to read today. I am so right there with you. I’m exhausted and sick of this. It SUCKS.

Was wondering if you’d be willing to post your daughter’s weight at 6month increments up to her current age (6mo, 1year, 1.5year, etc). Also, does she have any other issues because of the FTT (any delays?). You are a fantastic mom, doing all you can. Best of luck!

Hi Kiersten,

Here is a link to the page where I post Malia’s Stats. I have to update it. I just realized last time I posted her weight was in July of last year. I will try to get her new weights, post tube, this week.
https://mommamalia.wordpress.com/malias-growth-chart-and-timeline/
But right now at 4 years old she is 28.5 lbs.

As far as delays…she has none. We were warned by doctors that the FTT could effect her mentally but that never happened. It seems to only be effecting her physically. She is shorter and littler then the majority of children her age. I have friends with babies that weigh more than she does.

Malia did have a hard time learning how to walk on her own. She didn’t walk till she was close to 15M but she was talking at 12M. So I don’t really contribute the walking at 15M to her FTT. She is doing great in Pre-school. She is right there with all the other children mentally and in fact she has already mastered most everything they require the children to learn.

Her FTT baffles me. She has nothing wrong with her. No diseases. No reflux…nothing. If she would just eat well, she would be fine. It is a battle of wills in our house. We WILL her to eat and she WILLS not too. HAHA It drives me crazy!

Thanks for your kind comments! Keep in touch!

-Tianna

Tianna,
Thank you for the weight/height stats. I just wanted to tell you that my daughter was also born via C-section because she was breech and is VERY similar to your daughter in height and weight. She was 6lbs, 5oz at birth and now at 2 years old she weighs just 19lbs, 10oz and is 33 inches long. Her various specialists never even suggested I put her on a tube. We also found nothing wrong except “poor intake”. She has no delays either, but also walked a bit later. I will keep you posted if we find any miracles at this end to add weight. I imagine Charlee’s weight will be very similar to Malia’s at 3. Hugs and support to you!
Kiersten

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