Sunday, February 5, 2012

Feeding Tube Awareness Week

According to their website:
The goal of Feeding Tube Awareness Week it to spread awareness and educate as many as possible through Facebook status posts, notes, twitter, blog posts, email...basically however, you want to spread the word. The topics below are a guide. They will be posted daily on the Facebook Page but also encourage you to use them in your posts to others.

Daily Topics
Topic: Why awareness is important to my family - What would be difference for me/my child if tube feeding was better understood?

I want to start my post by recognizing what a wonderful idea this is. Maryam hasn't been a "tubie" since September 2010 and I'm extremely grateful but when she was tube fed, I always felt isolated. I know I wasn't the only mother of a tube fed child, through the magic of the Internet, I have met quite a few moms of tube fed children. But it's the little things.
I'll never forget how sad I would feel when we would go out to dinner, order our food and then when the server would ask what we wanted for the little one we'd bust out a can of Pediasure and a tube and watch the expression on his/her face change. It wouldn't end there though. There was always the people who would stare at Maryam and her tummy with her tube sticking out of her belly as they'd walk by to go to the bathroom. Or my personal favorite, the people that would flat out ask, what's wrong with your baby? Ugh, I hated that.
Sadly, the people who are aware of feeding tubes are usually only aware of them because someone close to them has had one. Whether it is an older person holding on to life, a person who is allergic to most foods, babies born with their intestines on the outside of their abdomen, or people with CF who need extra substance to stay alive, odds are you know someone who, at sometime, had or has a feeding tube. Since you're reading my blog you know of Maryam. Maryam started out with an NG (Nasal Gastric) tube because she was on a ventilator for the first 9 weeks of her life. Then when she could drink from a bottle she didn't have the stamina to get enough sustenance. Her little lungs were too weak.
After 8 months of too much vomiting, her respiratory system failing and lack of weight gain we had to make the toughest decision of our lives. We had to choose to permanently altar our daughter's anatomy. She went in for surgery only days after we discovered she was aspirating on her own vomit. She spent 2 more weeks in the hospital. At only 8 months old she had 3 surgeries, 2 hospital stays totaling 154 days and now had a new anatomy.
A feeding tube kept my little baby alive for her first 2 years and 9+ months. And she had her tube in her tummy a whole year longer, just in case. You probably know someone else who has used a feeding tube too. It's important that others are aware they're not alone. There is no reason to feel isolated. Maryam still shows everyone her scars and asks me lots of questions. I've shown her pictures! She thinks it's neat! We all think it's pretty neat that technology kept our little miracle baby around to become the great kid she is now.

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