Why a tube?

Wednesday, January 30, 2013

I'm often asked to explain Alli's feeding issues.  Often.  As in like, almost every.single.day.  At the top of the list, it's my most fielded question.  And it's probably the question I am most guarded against.  I know it's intrigued many of you.  Just two weeks ago, there was a Google search of "Why does Alli Grace not eat solid foods?" 
 
To be honest, we don't fully understand all the reasons.  And the exciting news (insert sarcasm) is that the specialists and therapists that follow Alli, don't get it either. 

So, here we are.....2 years old, 18 months post g-tube surgery and Alli is still  fed 100% through her g-tube.  There were moments and times where we all  thought she was close to a breakthrough.  But progress with preemies is almost always followed by regression.  And in Alli's case, she backslide all the way back to first. 

Good times. 

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The white "button" you see on Alli's belly is her g-tube, or Mic-key button.  If you look close, to the left of her button is a nice scar, where she had her open Nissen Fundoplication.   

 
Feeding issues are very common in preemies, most especially micro preemies.  While not all of them end up with g-tubes, they can and do fight for years against reflux damage, aspiration, aversions, and poor oral motor skills....just to name a few. 
 
We're lucky in the fact that we are coming behind, or in some cases right along side, some other preemies who have or have had a similar battle with being tube dependent.  It honestly makes for a great community of knowledge, ideas, and of course cheerleaders. 
 
There are 3 in particular that I follow:
 
There is Owen, whose brilliant writer of a Mom wrote this just yesterday. 
 
Jessi has written some amazing posts at Life with Jack about the tube weaning of her 23 weeker, Jack.  We're hoping to follow suit with the same outcome very soon! 
 
And then there is Charlotte.  Oh how I love me some Charlotte.  Her mom, Amanda, was one of the first preemie moms I connected with when we began our journey with Alli.  I found her over at Inspire while I was still on bed rest.  I've randomly emailed her and asked some tough questions and advice as we've walked this road.  She's always given the best and most candid advice of anyone.  
 
Last February, Amanda wrote the following post in recognition of Feeding Tube Awareness Week.  Did you even know there was such??  Well there is, as there should be, and it's coming up again soon!  It's a post that I would swear on 5 Bibles I could recite by heart, particularly the non-reasons for feeding tubes.  
 
I share this with you because it gives an adequate description of how Alli ended up with a tube.  And why at 2 she's still 100% tube dependent.  It also hits so close to home because of all the non-reasons Amanda includes.  If I had a dime for every.single.time someone said Alli would eventually eat when she's ready or hungry enough.  It doesn't work that way.  I wish it did.  If only it were that easy. 
 
 
Why a Tube??
One of the most common questions we get when someone meets Charlotte for the first time is, “Why?”

Why a feeding tube? Why a trach? Why did she come early?

Today, I’ll tackle the “Why does Charlotte have a feeding tube?” question.

Most of this is review for you all, but here it goes.

Charlotte was born at 23 weeks, 6 days. She was so early her esophagus wasn’t fully formed. For the first week of life, the esophagus and the stomach were not connected. They grew together after she was born. What does this have to do with the tube? Nothing.

But it illustrates how completely premature she was. How every part of her was premature. Her esophagus, her stomach, her intestines, her skin, her heart, her eyes, her brain, her blood vessels, her nervous system, everything.

At two weeks, Charlotte had a heart procedure called a PDA Ligation. One of the significant side effects of this procedure is that it can cause paralysis of the vocal cords. Which, of course, happened to Miss Charlotte Amalie. With the paralyzed vocal cord, she aspirated significantly.

Initially, Charlotte had a really good suck reflex. But every time she tried to eat by mouth, she filled her lungs, not her stomach, with food. This severely damaged her lungs. Not only did she aspirate by mouth, but she also aspirated by reflux–anything that was in her belly she would reflux up and then aspirate.

Yummy.

The only way to prevent the aspiration was to thicken her feeds to honey thickness. Due to her poor lung quality, sucking such a consistency out of a bottle was simply too much work for her. She would get exhausted after about 5mL. Eventually, she lost all ability to eat by mouth (due to pain from reflux and discomfort from aspiration), and to this day, she refuses to eat anything orally.

After a horrendous experience with aspiration pneumonia in September of 2010, we decided to have a g-tube and a nissen fundoplication performed. The g-tube puts food directly into her stomach, and the nissen fundoplication prevents anything in her stomach from refluxing past her esophagus. I wouldn’t wish a nissen on anyone– it’s pretty awful. She can’t burp, can’t vomit, can’t vent her tummy at all.  It can be very uncomfortable for her, but the nissen has literally saved her life.

There are a million reasons for a feeding tube. But here are some non-reasons for a feeding tube:
It’s not because she is a “picky eater.”
It’s not because we didn’t “try” enough things.
It’s not because she wasn’t hungry enough.
It’s not because we didn’t feed her.
It’s not because we didn’t try, we didn’t fight, we didn’t succeed.
It’s not because she “failed” to thrive, regardless of what a medical diagnosis says.


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Her feeding tube nourishes and strengthens her daily. And for that- we will forever be grateful.

 
 
 


Amanda and her BEAUTIFUL family live in San Diego.  Along with being a Rock Star Preemie Mom and advocate she blogs over at Understanding Prematurity. She was one of the first preemie mom's I connected with online.  Her amazing voice, way with words, and perspective are always spot on...I just wish she would blog a little more!     

1 comment

  1. My son is a 23 weeker as well and has a GJ tube. Dont let people get you down. These "tubes" are a part of our lives as well as our babies lives. We have just been dealt a different hand then most parents. I have a love hate relationship with our tube. I love that it gives my son the nurishment he needs but I hate that its always infected and gross. My son is finally able to take a small bottle 2 times a day of about 20 mls. We are working up VERY slow. It is going to take time... and I get pushed by my sons doctors and dieticians and even ocupational therapists. I dont see what the hurry is. Instead of putting all these demands on our children I think we should allow them to do things on their own terms. We will get there.. one day and when we do it will be a HUGE celebration!

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