Monday, April 19, 2010

Lessons in Tube Feeding

One question we are often asked is "what is it like tubing feed Noah."  I never imagined I would have the answer to that question but since I have turned into a bit of a nurse lately, I'll give our readers the run down.

The NG tube is changed once a week.  We begin by preparing all the tapes/tube and then remove the old tube from Noah's stomach.  He really does not enjoy that!  Then we wrap his arms and one person holds his head so that the tube placement is quicker.  We measure the tube, lubricate it and then insert it, trying to avoid curling it in his nose, mouth or getting it in his lungs.  

At almost every feed we attempt the bottle.  Go for it, Noah!  Lately, this has been a tremendously frustrating process.  Evelyn, the calmest woman I've ever met, feels saddened by the recent lack of bottling.  But we just keep making it a happy time, give Noah a chance to try and accept what he does.

Then we need to check his stomach contents.  This is to ensure the tube has not moved from the stomach.  This is the crucial step when giving anything into the tube - be it formula, medication or water (for flushing the line). 

Here is Noah watching mommy check his stomach contents.  We attach a 10cc syringe to his tube and pull back until I see something from his tummy making an appearance in the line.  Sometimes it is difficult, especially when the tube gets stuck on the side of the stomach.  We need to see contents before we continue so we do what is necessary - push 5ccs of air in to move the tube or hope that Noah will take a bit by mouth so the tube can move.

Then we attach the Kangaroo Feeding Bag which runs the drips in via gravity.  The feeder (Jared, myself or Evelyn, or at times a nurse if we have respite) then control the speed of the drips with the roller clamp.  In the following picture we see Noah and his Evelyn getting settled in for his meal.  You can see the bag hanging from the wall.  Noah likes to sleep for a while which really helps! Then we sing, gently rock him or do whatever we need to keep him still for another hour.  As you know from other posts, we experience a lot of vomits each feed.  That goes with the territory of feeding of refluxer!

Simple....once you get used to it.

Okay, so product trying continues.  The Hugga-bebe (green thingy below) is the newest item to arrive.  Despite a difficult time getting this thing delivered (but they set things right and I received a complimentary product), Noah is enjoying being nice and upright in activity centers.  He looks a little surprised that I'm taking this picture...

Experiencing food!!!  Oh wow...this has been a hoot.  Now, I know they advise people not to feed a baby until 6 months - blah, blah, blah.  Well, of course, we want Noah to experience food and different textures as early as possible.  This is to help him deal with his aversion to the bottle.  Once we had the green light from our feeding team, we starting offering Noah a playtime with food 2-3 times a day.  He loves the bowl, the spoon and has even swallowed.  We know that because he will reflux and the good stuff comes back up - poor little guy.  He has tried sweet potato, squash, avocado (a favourite), chicken, pork, rice cereal, oatmeal cereal, prunes, carrots and mum mum cookies!  Our Dr. said to try lots of different food without giving too much worry for allergies.  I mean, how many kids are allergic to carrots??  We are having fun and praying that the big changes coming up for Noah (see next paragraph) won't set back his fun with food. 

Today is a big day for us.  We are meeting with the surgeon to consult about Noah's G-Tube placement and the possibility of having a fundo done.  This is a huge decision - what will allow Noah to have the best quality of life.  He is barely gaining weight but did recently get to the 13 pound mark - just.  Sometimes he vomits his entire feed.  We know we need to do something to help him.  It won't be a perfect solution as of course, with surgery comes side effects and challenges too.  We need to discern what is best for Noah.  Please pray for us in this decision making time.

We have been so blessed with amazing meals and little treats this week - thanks to Heather, Krista, Carrie, Gloria, Jen, Missy, Leo, Andrea and Alice for not only food/treats but also company and encouragement.  I had the blessing of spending a few hours with 2 dear sister friends today.  The reason one was in town was a sad one, but as always we relished in the precious time together.  I am so blessed by the women in my life who surround me with love and compassion.  The encouragement is such a sanity saver.

Here is my encouragement to you today.  Whatever might be happening in your life, know that He is Mighty To Save (by Hillsong Australia).  

Everyone needs compassion,
Love that's never failing;
Let mercy fall on me.

Everyone needs forgiveness,
The kindness of a Saviour;
The Hope of nations.

So take me as You find me,
All my fears and failures,
Fill my life again.

I give my life to follow
Everything I believe in,
Now I surrender.

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave. 

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