Weekend recap

What a great weekend!  We took Battley to both soccer games yesterday.  Adam set up the tailgate tent for us so we would be in the shade.  She laid in my lap and slept the whole time.  Watching Hayden play soccer (or any sport he likes for that matter) is one of my favorite things to do.  I can't tell you how awesome it was to be able to do it with Battley!

We are up early this morning because B slept all night for 2 nights in a row with not a peep from that apnea monitor!  Praise the Lord!

I've gotten a few questions lately about her feeding tube.  I suppose I haven't posted anything about it really.

Before we went to the hospital to have her I knew that she may need a feeding tube and oxygen.  Let me just insert here that even though I knew that, I had no idea what day to day life would be like.  I really hoped that if we had to have only one it would be the oxygen because a feeding tube seemed really scary to me.  Fast forward back to the hospital and I realized that a feeding tube is nothing compared to oxygen.  If she was on full time oxygen we would be moving an oxygen tank around every time we moved.

So back to the tube...people have asked how long she will have it and why she has it.  There are no plans to have her eat any other way than the tube.  There are 2 good reasons why.  She has an open palette (roof of her mouth) so her mouth and nose connect making it hard to keep milk out of her nose.  Is there a surgery for this?  is the next question I get...the answer is probably yes, but we are not seeking any surgery for her at this time.  Why?  because she is too fragile to handle surgery and would probably not make it through a surgery.  Reason 2 is that the most work babies do is sucking and swallowing.  The more work B does, the harder her heart has to work.  So saving her from having to do this puts less strain on her heart.  That little tube is nothing for us...we are just thankful she doesn't need full time oxygen.

This week we are headed back to the cardiologist for a checkup and the pediatrician for the same.

C