Sunday, February 5, 2012

Feeding Tube Awareness Week... Day 1

As many of you know our precious baby girl has a feeding tube. Without her feeding tube, she would not be celebrating her 1st Birthday with her twin brother this Valentine's Day.

I'll start off by explaining why Addison specifically has her feeding tube.

In the NICU she was diagnosed with SEVERE acid reflux, they feared that if they tried to bottle feed she would aspirate and fluid would fill her already vulnerable lungs. Pair that with an uncoordinated SSB reflex (Suck, Swallow, Breath) in part because of her cleft palate and we now have a baby who did not learn how to bottle feed and was then diagnosed with FTF (Failure to Thrive).

When she was just shy of 4 months old doctors at University of Maryland performed a Nissin Fundo (a procedure that makes a loop around the lower part of the esophagus/top of the stomach, large enough for food to pass thru but hopefully not reflux back up) along with this they also at that time placed her G-Tube. Since coming home from the NICU, we have begun working on oral feeding, it's been a very slow to go process. We tried bottle feeding, it didn't work, so we moved on. As of right now, she takes less then an ounce of liquid by mouth at any given time and when she is in the right mood she may surprise us and eat a tablespoon of baby food. Clearly not enough for an almost 1 year old to survive off of.

Her doctor's and therapists remain hopeful that she will improve even more once her Cleft Palate is repaired. And they anticipate that we will be able to remove her feeding tube by the time she is 2 years old. Like I said, it's been a slow process this far, but dang it the girl loves food and she just keeps at it. We have good days and we have bad days, just like everything else.

Awareness is important to our family because of Addison. We have to feed her in public sometimes, and the stares we get will never cease to amaze me. The worst are stares from grown adults, they look at us like we are harming her, or with questions in their eyes. That pity look, like "what's wrong with her". There is nothing wrong with our baby girl, she just does things her way. People look at us like we are nuts when we are feeding Blake "real food" and Addison doesn't have any. We're judged because they don't understand that she could choke on what we are feeding her brother (or any food for that matter), or that she can't handle food.

If more people understood the reason's behind the feeding tube, and what goes into keeping our Tubie safe, then maybe we would get those stares. Or maybe it would open the door for conversation and education. I'll bet there are plenty of people that have feeding tubes, and you don't even realize it until it's time to eat.

And lets not forget, BOTH babies had feeding tubes in the NICU, those were NG's or OG's (nasal gastric, and oral gastric) that were places to relieve air in their tiny tummy's and later feed them until they were old enough to try bottle feeding. For some, feeding tubes are a permanent way of life, for others it's temporary. But the bottom line is, that they eat just like everyone else, except different.

I will gladly take the time this week specifically to answer any questions that you may have about feeding tubes and/or Addison's specific situation...feel free to leave your question in the comment's section below.

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