Feeding Tube Awareness Week 10:15a.m.

For those of you who have Facebook, this is my picture!!  So let me explain it!!

Gracie has a g-tube for feeding!!  When she was in the NICU, she had her share of an OG (oral gastric tube..goes thru her mouth to her belly to feed) & a NG (nasal gastric tube..goes thru her nose to belly to feed).. Remember those pictures??

While getting fed by these tubes, Grace would have severe reflux, and throw up most of the formula going to her belly.  So it was on to a NJ tube (nasal jujunal..which bypasses the belly to the jujunal then empties).

 They thought it was a milk allergy. 

Maybe just a "pukey baby".. but then they found a hiatal hernia in her belly, that reached up thru her ribcage.  So, it was around that time, while speaking to the surgeon that we all decided perhaps a g-tube placed in the belly, and a nissin fundoplication was necessary.  The nissin (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).. 

With a g-tube, in the hospital & now at home, Gracie can learn how to take a bottle.  Remember, a baby has to LEARN to swallow, suck & breathe at the same time to eat..or take a bottle.  We don't do that automatically.  So, in the hospital she did take a bottle & did very well with it. but then the feeding team there changed the rules a little (we unfort were not physically there when they did..we were home getting ready to bring her home in a couple of days).  There was some concern that she aspirated a little thin liquids into her lungs.  We didn't need any of that issue.

Like any other baby, Gracie eats every 3 hours, bolus feeds..which we just went up on.. she takes 80ml's (30ml = 1oz) over 1 hour, then off 2 hours.

She gets full.  If she's awake during her feeds, we rub her cheek & give her the pacifier, and make the feeling of getting food into her belly a pleasant experience.

We are currently working with a Speech therapist to feed by bottle.

Our GI Specialist is okay with how things are going!

There are other babies out there that have g-tubes.. they need g-tubes. 

There is nothing wrong with our babies. 

We are growing.  We are active.  We are gaining weight!!

We just eat differently.  Don't judge... ask questions!!

Please keep all babies fed by g-tube in your thoughts & prayers..

Addison & Hilyer!!  And I'm sure many more..

For Gracie, the #'s says it all.. born at 1 lb. 12oz on 8/3..

only to gain 3 lbs by Nov.  Gets her g-tube, and she has gained 6 lbs. in 3 months!

We love our tubie!!!

the downfall of a g-tube.. it leaks! And is a little messy..

Life is a balance, isn't??

Thanks for reading about our tubie!!

Please ask questions ... I'd be happy to answer them for you!

Love,

pattie & gary, Gracie & max