We had so much fun at the Point Defiance Zoo this past Sunday that I couldn't pick just one photo for this week.
So this post has three :)
Sunday also marked the start of Feeding Tube Awareness Week 2012!
Appropriately enough, we had an encounter at the zoo on that day that reminded me how important this week is.
An old lady randomly stopped me and Addy in front of the walruses and asked, "What's wrong with her?"
We get these types of questions pretty regularly because of the visibility of Ad's NG tube. Most of them are well-intentioned, and I usually don't mind explaining. People are usually impressed to hear how little Ad survived six surgeries and is doing such a rockstar job rehabilitating her intestine.
Some people have better ways of asking than others. But regardless of tact or format, I much prefer the asking to the funky stares and gawking double-takes.
On Sunday though, I really just wanted to look at walruses with my happy girl. So this lady in her emphezema-raspy voice kinda bothered me when she said, "What's wrong with her?" I kinda wanted to say, "Nothing. What's wrong with you?"
Instead, I explained that she's had six surgeries so it's a feeding tube that gives her formula as she learns how to eat more and that she is doing really well. And I took it as a good reminder to myself of why I love Feeding Tube Awareness.
So in honor of this week and our awesome little Ad, I'm going to try to keep up with the daily discussion topics on the FTA page and post our family's answers here on the blog.
Sunday - Day 1 Topic: Why awareness is important to my family - What would be difference for me/my child if tube feeding was better understood?
Awareness is important to me because tube feeding is an essential, long-term part of Addy's life. When Ad was still in the hospital, a well-meaning friend said something like, "I bet you can't wait to take her out for walks in the sunshine and show her how wonderful the world is without the tubes."
Well, yes... life may be easier without the tubes... but the tubes are keeping her alive and growing and thriving, so I'm grateful for them...and I'm still taking her for walks in the sunshine and showing her how wonderful the world is even with the tubes, so it's not like she's missing out on much.
With increased acceptance of these long-term lifelines, the difference for my family would hopefully be: better products for a better quality of life. Sometimes I wonder if the people who make the products actually use the products themselves. They are good, but I could think of a bazillion ways to make them better. That's because it is such a huge part of my life, and one that isn't going away anytime soon. On the top of my list: better-thinner-more flexible-much longer Zevex pump tubing, better feed bags that don't leak!, better NG face tape, better smelling and tasting formulas (Addy's Elecare is like metallic potatoes), better light-as-a-feather ice packs that stay frozen for more than 24 hrs, and better NG tubes in pink, purple, or sparkle instead of this funky canary yellow. And if Burberry ever made a special lightweight toddler feeding pump bag, you can bet that Addy would be getting one for Christmas too. It's the little things... :)
Well, yes... life may be easier without the tubes... but the tubes are keeping her alive and growing and thriving, so I'm grateful for them...and I'm still taking her for walks in the sunshine and showing her how wonderful the world is even with the tubes, so it's not like she's missing out on much.
With increased acceptance of these long-term lifelines, the difference for my family would hopefully be: better products for a better quality of life. Sometimes I wonder if the people who make the products actually use the products themselves. They are good, but I could think of a bazillion ways to make them better. That's because it is such a huge part of my life, and one that isn't going away anytime soon. On the top of my list: better-thinner-more flexible-much longer Zevex pump tubing, better feed bags that don't leak!, better NG face tape, better smelling and tasting formulas (Addy's Elecare is like metallic potatoes), better light-as-a-feather ice packs that stay frozen for more than 24 hrs, and better NG tubes in pink, purple, or sparkle instead of this funky canary yellow. And if Burberry ever made a special lightweight toddler feeding pump bag, you can bet that Addy would be getting one for Christmas too. It's the little things... :)
Monday - Day 2 Topic: Why my child has the tube they have now - a highlight on the medical conditions that require tube feeding.
Addy has Short Bowel Syndrome because she needed to have more than 85% of her small intestine removed. For normal healthy people, the small intestine absorbs all the nutrients from food. Missing 85% of this essential organ makes it that much harder for Addy to absorb nutrients and grow and gain weight like she's supposed to. We are currently in the process of rehabilitating her intestine, which requires a continuous slow drip of formula at 62 ml/hr through her NG 24 hrs a day.
*This last photo of Addy on the ferry is from June 2011. She still had a G-tube then instead of an NG, and that line stretching across is her central IV line infusing TPN.
Tuesday - Day 2 Topic: Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires. -- Addy has an NG (nasogastric- nose to stomach) tube that is low-maintenance. She previously had a G-tube directly to her stomach that caused us lots of leaking problems, so we had it surgically closed in September. Now, all I have to do is change out her NG once a week, and daily, we just mix her formula, fill up a new feed bag, plug it in to her pump, put it all in her tote with an ice pack, connect the tubing to her NG, tape it to her bib to prevent pulling, and that's it. She gets continuous 24/7 tube feeds, so I just fill up the bag with more milk when she runs low. The worst part of it all is getting her to understand that she needs to bring the bag with her wherever she goes. She doesn't get this yet, so she's constantly pulling the tubing, sometimes spilling Elecare all over my carpet. Adventurous toddlers just aren't designed to be connected to less than three feet of rope.
Day 3 Topic: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions? -- I don't know about my friends and family because I haven't asked them-- but for myself, my attitude has changed a lot. When Addy was two weeks old in the NICU and I had no idea what this journey would be like, I was disheartened when her doctor told me she might need a long-term feeding tube. He said that he fully expected her to recover, but that it might take 1-2 years, and that she might need a feeding tube, but that in the big scheme of things, that wasn't really a big deal. I didn't get it then, but he was so right. Of all the challenges of Short Bowel Syndrome, the tube feeding is so low on the list. Funny enough, it's what people ask about the most... but compared to the chronic diarrhea, severe dehydration, random projectile vomiting, struggle for constant weight gain, long-term risks of TPN, and obsessively meticulous central line care (including constant fear of a bloodstream infection), the tube feeding is SO-not-a-big-deal.
Thursday - Day 4 Topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact. -- She sees a great team at an excellent regional children's hospital (one of the top ten in the country), so fortunately we haven't encountered this. There are lots of other kids at the hospital with feeding tubes, so it's nothing uncommon. And the hospital is the one place where we never get funny looks because of the NG or pitying "awww is the baby going to be ok" type questions. There, Addy is like Miss America-- waving to everyone and having them all tell her how cute she is.
Friday - Day 5 Topic - What do you want clinicians to know about the day-to-day life with a feeding tube? -- The tubing is too short and too thick for an active toddler, and I have no alternative... nor do I have the time or resources to invent my own, but maybe when the girls are all grown up, I might give it a try.
Saturday - Day 6 Topic- Show us your awareness video / Share your awareness idea. -- I don't have any videos or fun ideas-- I just keep on being open to talking about it whenever someone asks...which is usually at least once a week. Last week it was the lady at the zoo, and today it was a guy at church. Little Addy and I are raising awareness one curious question at a time =)
Pictures are from last September and October when Addy first got the NG
1 comment:
Awww, i miss you guys. I wish you were near us so we could go out together when we have our baby not the same color as us and have people try to decide which rude questions to ask first.
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