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Sunday, February 5, 2012

2nd Annual Feeding Tube Awareness Week - What Awareness Means to Me.

Naomi wearing instead of eating her food
At almost 2 years.
I never thought I'd be the mother of a child with a feeding tube.  I never thought my children would be anything other than perfect.  I should have figured out that things don't pan out like we hoped and planned when I developed pre-eclampsia with my first pregnancy and Sam was born after my first (and only) private Leer jet flight from Valdez to Anchorage for an urgent induction, but how quickly we forget the things that weren't according to our plans, especially when you're raising children.  After Sam, came Beth and after Beth came Eli , after Eli came Naomi and by that time I really had the hang of this mom thing.  I could nurse a baby, do dishes and read a book to one of the older kids all at once.  I could safely navigate four small children through Target and come out with my sanity still in tact.  I'd given up on store bought baby food, I had the food mill down and my baby was going to eat spice.  No bland diets for this one and then something changed.  Naomi didn't grow like the others had.  First she was dainty, then petite, then small, then downright skinny.  Naomi also didn't eat quite like the others.  She struggled to swallow purees, not quite sure what to do with them, she weaned herself from the breast not long after turning one, but didn't pick up drinking other things to make up for it.  We tried all sorts of tricks to get her to eat more and better, we gave her high calorie formulas mixed with half and half, I fed her with a sippy cup while she slept because she would suck out of instinct.  We worked so hard to get Naomi to grow, we went gluten free and started iron supplements when tests indicated celiac and anemia.  Not too long after Mary was born she started vomiting.  At least a few times a week and often hours after she had eaten.  We were lost.  We couldn't feed our baby and make her grow.  We tried medications that have the side effect of stimulating your appetite but they only had a short-lived effect.
In the hospital with the ng tube.

Squishing berries in her hair at feeding therapy.
Finally at 2 1/2 years Naomi wasn't just skinny, she was starving.  She had quit growing and her body was on the verge of consuming it's own organs to give her energy.  At that point we finally conceded that Naomi needed a feeding tube and she was admitted and received an ng tube.  The tube allowed her to start growing again but came with it's own difficulties, Naomi was disturbed by the tube down the back of her throat and she completely quit eating.  What a bittersweet realization that was.  The exact thing that was allowing my child to grow was preventing her from eating.  Two month later Naomi got a more permanent g-tube, a tube that goes through the abdominal wall directly into her stomach and two years later she still has it.  We don't know why Naomi wouldn't eat other than eating was uncomfortable for her.  We don't know why she did and still does vomit.  We don't know why sometimes her stomach and intestines move food too slow but we do know that Naomi has come a long way since then.  She is GROWING!!!  She is HEALTHY!!!  She is EATING!!! but not enough to survive.  Naomi can and does eat orally but she is still g-tube dependant.
Naomi can feed herself.

She eats on the go too with her backpack.


Okay, so finally getting to the point.  Awareness means to me that Naomi can go to school and be accepted by her peers as someone who just eats a little different.  Awareness means going to the ER or to some doctors and having them understand the journey we've been through.  Awareness means that another mother whose toddler is getting a tube for the very first time might not think she failed to feed her child, as I thought, but instead will know she is giving her child health.  Awareness means people asking questions instead of staring.  And most of all awareness means we don't have to hide that we are different. 

Awareness means not thinking of Naomi as disabled but instead thinking of her as super-abled.  Naomi can eat without moving a muscle, now that's impressive!


It keeps rotating this pic, but here's a Super Tubie with her Silly Sis!

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