Hi everyone,

This week saw us take a small step backwards, hoping that we would actually be able to move forward.  Alexandra's breathing support (something called CPAP) uses air pressure to keep her fragile airways open.  It also means that feeding her normally is out of the question because the air pressure would force her food into her lungs.  Therefore, she has been getting her milk from a feeding tube in her stomach.  Unfortunately, her original problem (born without an esophagus) means she really has a hard time keeping liquids in her stomach... they tend to come back up.  When those liquids come back up, they can go to one of three places.  One, the mouth (baby puke!).  Two, they can fall right back to the stomach down where they came from.  Three, and the worst option, the liquid can find its way into her fragile lung tissue (called aspiration). 

We think Alexandra may have been getting small amounts of aspiration, which causes the lung tissue to become inflamed.  Inflamed tissue has too much fluid in it to function normally, so this could have accounted for why she still needs a fair bit of help breathing.  So on Monday, it was decided to move the feeding tube deeper... it's now just past her stomach and resting in her intestine.  This means less chance for aspiration - in theory, anyway.  Changing her feeding like this was the small step backwards I mentioned before.

Since the change was made on Monday, she has been doing better with her breathing.  They have been able to "back off" of some of the support she was getting.  This coming week they hope to be able to go down on a key parameter - the amount of pressure in the CPAP.

We've also decided to share a website with everyone.  For those who want to know what it's like to be born without an esophagus ("EA") AND to have your stomach piped into your airway ("TEF"), please check out this website: http://www.eatef.org/

Today Alexandra is 9 weeks old.  Happy 9th week, Alexandra!!!

PS - A total of 192 people viewed the blog since it was started last week.  We are EXTREMELY happy to see so many people take an interest in Alexandra.  Please keep coming back, and check out www.eatef.org/ for more information!

And just for completeness, here is a picture from this week!