01 June 2011

No More Day Tube Feeds!!!

Whoo-Hoooo!! Today is worth celebrating!! We stopped our last daytime g-tube feed!  That means that Bennett now gets hooked up to his feeding pump only at night!  What an accomplishment for our little guy!!

He is now eating about 50% of his daily calories orally and 50% through the pump.  He needs to eat about 1000 calories per day (normal children his age eat about 800, from what I understand).  And of those, almost 500 calories is how much he is now eating during his daily five structured feeds.  It is HARD work - for the feeder and for Bennett.  But it is SO worth it!

I cannot say enough great things about this program.  It is so excellent.  I continually thank God for the opportunity to be here.  Not everyone gets this chance.  And I am very aware of the blessing that it is to families like mine.

We have been here now for 2.5 weeks.  So, ideally, we have 1.5 weeks to go.  We have not been given a discharge date but we can tell we are getting closer.  For a while, we were the "newbies" here.  Now, gradually, as patients we knew have now left and patients we didn't know have now arrived, we're becoming "seniors" here.  Eventually, it will be our time to depart.

When we were first here, there was a 6 year old girl with sensory issues, a 5 year old boy who had a 6 organ transplant at one year old, a 5 year old boy with short guy syndrome and a 3 year old girl with a heart condition - all who had issues with eating.  They have now all been discharged.  Now, in the Feeding program, there are two 3 year olds, two 2 year olds and Bennett who is 20 months (the youngest of them all).  I don't know all of their stories (yet) but do know that each of the children here struggle to maintain their weight and need feeding therapy to intervene.  Four of the five patients here have a g-tube.

I have begun to consider what it is going to look like to do this at home.  I was recently told "it's like having a newborn again" in the sense that I will have to feed my child every 3 hours or so.  I don't know exactly what it will look like but I do know it will be very disruptive to our life for about the first six months at least.

I was in the process, just a few months ago, of talking myself through our family situation.  Oliver's emotional needs have slowed us down alot.  He struggles with stress and transitions.  He needs alot of attention and care to help him feel safe throughout the day.  Bennett's Cystic Fibrosis care takes alot of time.  We cannot skip treatments and must be diligent to give him his medicines as needed.  This feeding thing is going to slow us down even more.  We are not like other families.  We cannot keep up with other families.  I am going to have to be patient with myself, my expectations and other's expectations on our family.  If I focus on only the needs of my family, I can feel very much at peace.  But when I begin to look at other families and wonder, "why can't we do that?" or "why does it seem so easy for them?" then I become dissatisfied at what God has called me to do and the place God has called me to be.  So, already, I am preparing my heart and my expectations in hopes that, by the time I get home, I will be ready for what lies ahead.

Things here are going really well!  We are all very hopeful that Bennett will be able to surpass the 50% mark and eat even more in the next week!  How freeing it will be when we finally put away the g-tube pump for the last time. (#27:) I am so thankful for my son's ability to eat orally, in any capacity, but especially what he is able to do today!


  1. that is SUCH AMAZING NEWS!! i'm so happy that things are going so well. we've been praying for you guys every day. let's talk soon :)

  2. Excited for you guys and missing you all already!!!


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