For Audrey

This week is National Feeding Tube Week.

And since my youngest daughter is a tubie (as they are known in our world)  I would be remiss if I did not make a post about this adventure.

For those of you who have endured this story before, my apologies.  Thank you for giving me your ears, or in this case, eyes, one more time.

There were many days when Audrey was in my womb that her life was an absolute uncertainty.  She may or may not be delivered alive, she may or may not survive IF she is born alive.  She may or may not be ‘normal.’

She is a twin and while I was pregnant with the girls Audrey was diagnosed with SIUGR (Selective Intrauterine Growth Restriction) due to an extreme marginal velamentous cord insertion. (Basically that means her cord was on the very outer edge of the placenta and did not have a protective coating surrounding the veins and artery of her umbilical cord.)  Her sister’s cord was right where it was supposed to be and she was growing right on track.

So…..

 because Audrey wasn’t growing right they watched her very closely and when it became too dangerous to leave her in my womb they delivered the girls.  They were 28 weeks.  Audrey weighed 1lb 3oz at birth and her twin Maggie weighed 2lb 12oz

She spent 86 days on the rollercoaster ride that is the NICU before we were able to bring her home.  She came home on a very tiny amount of oxygen and an NG tube because she wasn’t finishing all her bottles in the NICU.  An NG tube is a small tube that is placed in her nose and down her esophagus and sits right in her stomach.

Eventually,

Audrey gained her strength and was able to come off of the NG tube and take her bottles without the assistance from the NG tube.  But then…. Audrey started having severe reflux.  She could eat a bottle and throw the ENTIRE thing up.  So she started wanting to eat less and feeding her became more and more difficult and took longer and longer.  Because who wants to eat when they know that they are just going to throw it all back up.

Then...

Audrey got pneumonia three times during the winter months and the last time did her in.  She was working so hard to breathe that she couldn’t muster the energy to breathe and eat.  Her instinct told her to keep breathing and quit eating.  We tried everything we could think of to keep her eating from her bottles but nothing worked.  Finally we all had to accept that Audrey needed to go back on the NG tube.

An NG tube is not a permanent solution to feeding issues.  They are very easy to pull out and left in long term can wear away the lining of the septum.  By Audrey’s response to feeding after the NG tube was replaced we knew Audrey was going to be in this for the long-haul and decided to go ahead and have the G-tube placed.  This goes directly into her stomach, completely by-passing her mouth and placing her nutrition directly into her stomach, so Audrey can continue to get the calories/hydration she needs to grow.

 

This tube helps keep her life a certainty (nutrition-wise).  Without it……….  She wouldn’t be here.

Yes people stare.  Yes people judge. Yes people ask a billion questions.  Yes there are days that I would love to hide it.  

But…….

If I hide it, if I don’t accept the judgment and in return try to educate, if I don’t look right back at them, if I don’t answer their questions, they will never know.  It will never become something that she is accepted for.  It will never be something that becomes ‘normal’ to everybody else too.  And I am PROUD of my daughter. She is AMAZING.  She is BEAUTIFUL.  There is no reason for her to hide, so why should I?  She has beaten more odds at her tender age of 21 months than I will ever surmount myself in this lifetime.

And I can guarantee you that EVERY tubie has an amazing story.  These kids are Super-Heros!

If you know someone who has a child with a G-tube, reach out to them and let them know you support them. Send them a happy tubie week message, high-five them, whatever you will. Familiarize yourself with the G-tube process. It’s really pretty amazing.

Someday Audrey may not need the G-tube any more. We see several specialist several times a month to help facilitate this goal.  If she ever decides she is ready to eat on her own again it will be FANTASTIC!!

But, even if it never ever happens....

 Even if, for the rest of her days she receives her nutrition through her g-tube and not through her mouth…

then I am completely OK with that.

For all that could have happened and didn’t, I’ll take it.

Thank you for your eyes, your ears, your willingness to read this excessively long, personal story.

And Audrey thanks you too.

A succession of pictures of Audrey playing her favorite game. (Patty-Cake)  :)

 

:) Thank you.