Feeding Tube Awareness Week: Why Sweet B Needs a Tube

"Sweet B is truly a soul that has lived a thousand lives in her short time here on earth. She is stronger than I could could dream of being, and her beauty resonates from the inside out. The reason that people look at her is because her soul speaks to all she meets. They do not see a tube, to me it is like a veteran coming back from battle, this is just a part of it. It is really a sign of her strength, her journey. You should never feel the need to hide, it is like Sweet B's purple heart."

This quote was taken from Sweet B's teacher, during a period when I was concerned about what people thought when they saw Sweet B being tube fed. She also happens to get a lot of attention from people when we are out in public, even when she's not tube-feeding. It is probably her big pink glasses, but it could also be her beautiful face, or as her teacher says, her soul.

It is Feeding Tube Awareness Week. If you would have told me two years ago that I would have a tube-fed baby, I would have just died. Everyone who knows me well knows of the anxiety that I battle, and add in the micro preemie with a hole in the middle of her tummy, and you would think it would be a recipe for a total freak out for me.

But I've surprised myself, almost as much as Sweet B has surprised everyone, because I'm now a tube toting, syringe using, feeding pump pushing, proud tubie mom.

Sweet B's journey to her g-tube is a long one. If you'd like every gory detail, then read this post in which I describe it in gut-wrenching detail. If you don't have a spare three hours, then I'll briefly tell you why right here.

Sweet B was a micro preemie who spent the first six weeks of her life eating from an NG tube, which is a tube through her nose.

She eventually fed through a bottle and even teased me by making me think that she just might breast feed someday. (I pumped exclusively for five months which gave her enough frozen milk to last her until nine months. I tried to breastfeed daily for five months.) She was always a slow feeder and her feeds would last from 30-40 minutes. Pair that with the 40 ounces that I pumped daily (I was a cow, literally) and that is a formula for complete exhaustion.

These are freezer gallon bags.

This sounds like it has nothing to do with her but it does, and I will tie it in very soon.

She began throwing up a lot during and after feeds. She was put on reflux medication. Over a period of several months, her suck became worse. She would only eat while she was sleeping, which means that her suck was a reflex and it wasn't something that she really knew how to do well. Her feeds became longer and longer and she started completely refusing the bottle, until she was taking in a total of six-fourteen ounces a day. She needed a minimum of 24 ounces. We had three hospital stays because of her failure to thrive. She was eventually put on an NG tube again (the darn nose tube) which contributed to her oral aversion.

Her reflux had gotten so bad and so painful that it caused her to stop eating. I know that it sounds unreal and like she could be on some "You Won't Believe How Weird This Is" reality show, but it's true and it happens.

I made one of the most difficult decisions of my life when I called her surgeon and begged him to place a more permanent g-tube. Hubby and I had had enough of shoving the tube down her nose every time she pulled it out, and her eating was only getting worse. She was taking a total of six-eleven ounces a day orally at this point, and during her hospital visit her urinalysis showed that she was in keytosis from dehydration. This is what your body goes into when you starve yourself with the At.kins diet. Her development was showing delays because she spent all day having a bottle shoved down her throat. There was no time for rolling on the floor or doing lots of tummy time. My hubby and I were a mess. Now, the decision to place the tube had nothing to do with my husband and I. We would have endured this for years if it was in Sweet B's best interest. But it wasn't.

And she was starving.

And showing delays.

And not growing.

And would die if she continued eating this small amount of food.

And sometimes you've gotta make scary decisions.



This is right after the tube was surgically placed.

You could say that it was my choice to put the tube in her, but was it really? What kind of parent would I be if I sat by and watched her grow sicker simply because I didn't want to do an "uncomfortable" thing like surgically place a hole and a tube in my baby's belly?

A feeding tube itself wasn't a choice...She needed one to live, but the doctors suggested keeping her on the nasal tube for however long it took her to eat orally. It is non-surgical and can be pulled out in a second. However, with the nasal tube she became even more orally adverse and it aggravated her reflux by keeping her throat open. Not to mention that she would pull it out constantly and we would have to stick it back in, making sure it was placed appropriately in her belly and not her lungs. I also knew that she would need a tube for a long time. The surgically placed tube was a better option in so many ways. And when she's done with it? It simply gets pulled out in a doctor's office and closes within a few hours (in most cases).

Now is when I bring in the pumping/breastfeeding thing, to demonstrate just how much I tried. I tried the hardest that I could to give her the best nutrition possible. I was willing to spend hours upon hours trying to bottle and breastfeed her and then pump six times a day on top of that. Would someone who spent hours doing these things place a tube in their baby simply because they didn't feel like trying anymore? No. Would someone with a degree in Child Development and a teacher of ten years not know how to feed their baby? No. It's pretty darn easy to feed a baby.

Sweet B doesn't have a tube because she's a picky eater or takes too long to feed. She doesn't have a tube because we didn't try sweetening her milk or using a different nip.ple. She doesn't have a tube because we put too much pressure on her to eat or because I freaked out. Believe me, no surgeon would place a tube for any of these reasons.

She has a tube because she stopped eating due to reflux, and that's that.

Sweet B would have died if she didn't have the tube placed. This tube has saved her life. It's not easy to be a tubie mom. It's not easy to constantly keep track of the ounces that she has been fed, and it's not easy to break out the equipment four-five times a day and every night, but it is what she needs to live, and we're more than glad to do it for her.

As her teacher said, I do believe that her tube is her badge of honor.

I thank God for her tube. The tube scares some people and demands hours and hours of my attention, but this tube gives her life.

When life gives you lemons, make lemonade :)

Happy Tube Feeding Awareness Week. I have so much more to share about this tubie life, and I plan on posting daily, so please check back!