Feeding Tube Awareness Week: Why a tube for Alli??

Sunday, February 10, 2013

Today's Topic:
Tell your story. Educate others about what life is like with a feeding tube and with your child’s medical condition. Why does your child have a tube?
Today marks the beginning of Feeding Tube Awareness.  Who knew there was such a thing?  It seems like there is an awareness day, week, month for everything.  Keeping up with it all can be a daunting task.  But that doesn't mean there shouldn't be these times to make things known and better understood.   
Last month I shared our preemie friend Charlotte's g-tube story, which is one of my favorites, but this week I'll be blogging about Feeding Tube Awareness from our families perspective.     

So why did Alli require a more permanent feeding tube?? 

I thought you would never ask.  
Alli was born at 27 weeks.  She weighed just a little over 14 ounces and had 0 amniotic fluid which caused extremely premature lungs.  She spent 9 weeks on life support, which was a double edged sword, keeping her alive but continuing to damage her already extremely damaged lungs.  
The point being, what are most newborns doing their first 9 weeks of life??  Certainly not spending their time on life support. 
Which brings me to reasons:
1) Lost out on 13 weeks in the womb of proper lung development and the practice of swallowing amniotic fluid...which prepares a baby to take a bottle/breast soon after birth
2) Spent 9 weeks on life support inhibiting any instinct in feeding even longer.  
Due to her severely undeveloped/damaged lung plus the development of severe pulmonary hypertension on day 2 or 3 of life (due in part on those crappy lungs of hers), Alli continued to maintain extremely high oxygen needs. During that time, she also had many scares with NEC, possibly one of the scariest acronyms in the NICU.  Those scares caused her feeds to be stopped, started, stopped, started, and stopped and started again. You get the picture??
Which brings me to reasons:
3) A baby can not be fed on extremely high oxygen.  Alli switched back and forth between CPAP, Nasal SMIV, BiPAP for weeks after her extubation off the ventilator.  There is just too much oxygen and pressure being delivered through these apparatus for a baby to feed safely and without aspiration.  
4) We had several NEC scares which caused Alli's feeds to be stopped until a determination was made.  Each time they were stopped, Alli was cleared, and we were able to build her feeds back up again.  Building those feeds back up again is always a tricky and lengthy progress.  
Alli was finally able to take her first bottle on April 6, 2011, almost 3 months after she was born.  She sucked down a meager 10 cc's like a champ.  We thought, "Hey this will be easy!"  

While Alli was still on life support, one of our favorite nurses told us, that getting a baby to eat was going to be the hard part.  I remember secretly laughing.  
I ate my crow, don't worry. 
Soon after that first bottle, Alli's oxygen requirements started sneaking back up.  She was still on quite a bit of O2 when we began feeding her bottles.  Learning how to suck, swallow, & breathe (when it doesn't come naturally) can be hard on a little toot.  But she was declining faster than usual. 
We were sent for a modified barium swallow study and found out that Alli was silent aspirating her feeds.  We were able to modify the way we fed her (lay her on her left side) and continue on. 
But she kept slipping further and further away from coming home.  Her O2 needs skyrocketed, her pulmonary hypertension was out of control, and she was not eating.  It was May, a month passed my due date and the ventilator was staring us down. 
A few of our favorite neonatologists developed a treatment plan to focus on Alli's respiratory needs first.  After all, baby got to breathe.  So with that in mind, we put her learning to feed in second place, as it should have been. 
Her new treatment plan was successful.  I wholeheartedly believe it kept her from getting a tracheostomy and set the perfect stage for her heart and lung health.  But we still didn't have the full picture. 

This led us into July 2011.  Alli's oxygen requirements and pulmonary hypertension were finally under control.  But during that time, under her new treatment plan, she still never could successfully take her bottles.  She tried and tried.  You could see it all over that precious steroid baby girls face.  But all our best efforts, her best efforts, and the efforts of seasoned doctors, nurses, and therapists (AKA: Alli's Dream Team) couldn't get her to eat.  So we began to prepare for the g-tube surgery, but before we did, a few tests were ordered.  A 24 hour pH-probe and Upper GI. 
Which now brings me to reasons:
5) We had been told by Alli's Cardiologist that due to her severe Chronic Lung Disease and Pulmonary Hypertension she would never be able to successfully eat all of her feeds from a bottle.   Her endurance was just too low to allow her the ability to eat.  God love that man.  He humbles himself and has always let this Mama do her thing.  He knows I like to take the bull by the horns and set out to prove otherwise. 
Again, I ate crow.
6) During Alli's pH-probe, it was found that she had severe and silent reflux.  This entire time she had been refluxing and no one had a clue.  We also made the assumption that she had been silent aspirating her reflux into her lungs.  Good times!  No wonder those puppies weren't getting better.  At this news, we all let out a huge sigh of relief with the thought that her lungs could indeed get better.  
July 13, 2011, Alli had her g-tube surgery with a Nissen Fundoplication that would prevent her from reflux. She tried to die on us that day, but that's a whole other story.  Feeding her this way is not ideal, although there are times I secretly wish all our kiddos had a g-tube (I know, that's sick and twisted, but many of you know what I mean).  We've fought tooth and nail to get this baby to eat for almost 2 years.  It's been more than difficult and the time it takes to feed a g-tube baby, well it's pretty time consuming. 

But it has kept her healthy.  And that's what is most important. 
After her surgery we quickly realized that some of the behavior she was exhibiting was pain from reflux. It hurts to eat so I won't eat.  Duh, makes sense to me.  Pair that with her respiratory status, which left her with poor endurance and very little reserves to suck, swallow, & breathe and it makes  perfect sense why we had to take this road. 
Today, Alli is still fed 100% through the g-tube.  We've continued to fight for her to eat, but as we've traveled this road she's developed a few new reasons to why she doesn't eat. 

Stinkin' Preemies and their noncompliant ways.  That's a joke people.  Sort of. 

Cerebral Palsy:  Alli's CP shows up significantly when it comes to eating.  She is physically unable to chew, swallow food, milk, and even her own saliva (she's a drooler). 

Sensory Processing Disorder:  is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.
Oral Defensiveness:  Stems from her SPD which was more than likely caused from pokes, prods, and tubes down her nose and mouth.  Another NICU necessary evil.  I don't blame her. 
Oral Aversions:  Avoidance or fear of eating, drinking, or accepting sensation in or around the mouth (i.e. toothbrushing or face-washing).  Again, tubes down throat and nose much??  

Will Alli ever eat??
To be honest, I don't know.  Alli has a lot of issues going on.  a lot. 

As in fierce fire breathing scary dragon kind of issues. 
That's what feeding is to me now, a fire breathing scary dragon.  He's there all the time.  At every corner.  And he's pretty darn relentless. 
We do have a few friends who have slayed the dragon successfully.  And I believe with more time, a million hours of therapy, and some divine intervention she will.  She can.    
But it's still a long road.  A very long.long.road. 

Alli's tube has kept her alive, well, and growing.  In essence it has saved her life.  It's kept her alive when she couldn't physically eat.  How can I not be thankful for that??  How can I not want to bring awareness to that? 



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