Ok.  This picture has nothing to do with why I am writing tonight but by now we all know that I just love to put her up here for you to look at.  I really wanted to get on here last night and talk about the feeding tube.  Instead I spent the better part of my evening folding the laundry that I spent the better part of my day washing.  Not exciting but an accomplishment I'm proud of.

Well anyway.  On Saturday, last weekend, I was sitting with some other CF parents talking about all kinds of things CF parents talk about.  One of them is always NUTRITION.  Meaghan was the only one of the kids we were all talking about with a g-tube (we call it her button).  The trouble CFers have when it comes to their nutrition is that it takes 2-3 times the calories of their peers to absorb enough for positive weight gain and growth.  For many of them it takes "special" treats and formulas to achieve weight gain.  When Meaghan was still very small it was obvious to everyone she wasn't getting enough calories and the decision was made to place a g-tube.  Meaghan was 8 months old when she had the surgery, I don't remember her numbers, but she was still wearing some 3-6mo clothes.  Her numbers didn't make it on the charts then but within weeks she was on a steady upward curve.  Only twice did I question our decision to put in the tube.  Once while she was recovering at home after the surgery.  She was in so much pain, I hated that I did that to her.  Then when we made the change from the PEG to the Mic-key in the GI clinic.  It would be a bad idea for me to go into detail about that one, trust me.  Those two times were hard but every day since then I say, "Thank You".

With a few little exceptions the button has made our life so much easier.  I am able to give Meaghan all the bad tasting liquid medication she needs through her button.  I can help keep her hydrated, each night I add 8oz of water to her bag.  And, when she's not feeling well enough to eat I can add to her belly for her.  Now for the down side, and why I wanted to write tonight.  First, there's the obvious "hole" in her body.  Not a big deal to me at all.  The button is small and easily changed.  For anyone with pierced ears it's as easy as changing an earring.  It is almost undetectable when she's dressed.  As she grows we'll worry about the two piece bathing suits.  The second issue with having a button is that sometimes during a feeding it will come apart and leak.  The formula is very thick and sticky and smelly.  You know just by walking past the room when something like this has happened.  I said, "leak" but in our house we say she fed her sheets.  When that happens, and it did on Saturday night, it means stripping her bed completely, bathing and redressing for bed. You know it rarely happens when you are fresh and ready for this kind of undertaking.  It's always at 2 or 3 in the morning when you stayed up late to watch a movie with your hubby, realized the dishwasher hadn't been loaded and finally hit the pillow around midnight.  To make matters worse, that night Jonathan came in at 2:30am saying he couldn't find his screwdriver or some other kind of nonsense.

So, just in case I haven't already covered all my feelings on feeding tubes, there you have it.  The good far outweighs the bad.  For each their own, this is only my opinion.  Thanks to everyone for all the continued support.  Please don't forget Meaghan is spending another week in the hospital starting Nov. 5, we still need your thoughts and prayers.