Reflux is harder to handle than his heart problem just not life threatening.  It took us months to finally be diagnosed with Reflux.  The doctors insisted he was just a fussy baby. We knew that it wasn't normal for a baby not to like his bottle.  He would take 2 sips of his bottle and start screaming in pain. Eating is very important for an HLHS baby and we were very concerned.  We actually started running the vacuum cleaner everytime he would eat.  This would help calm him and he would eat better.  We tried over and over to tell the doctor he would be a happy baby if he didn't need to eat.

Finally, we were at his lung doctor and she saw how he ate.  She immediatley sent us for some test-Barium Swallow.  Because of his heart condition they didn't want to insert a tube so the tried to get him to drink the barium.  He dranked an ounce and had two episodes with that small amount of barium.  He was diagnosed as having severe Reflux.  It was such a relief to have someone finally believe us.

He was started on Propulsid and Zantac.  However, he started getting worse.  He would eat and then about 45 minutes after eating he would start dry heaving.  He would lose his breath and turn blue.  We rushed him to the emergency room during one of the episodes.  With his heart condition, we were scared that he might not start breathing again.  The lung doctor came to the ER and changed his medicine.  He now takes Propulsid, Prilisec and Carafate.  The medicine did wonders and he finally would take his bottle without screaming.  He still isn't a happy baby but he will eat know without us forcing him to eat.

He still has a couple bad reflux spill each week but they are not as bad as before.  Now he spits the formula up.  I think it is easier on him than dry heaving.  I can immediately tell when he is about to have a Reflux spell.  He will start to scream then cough.  He will cough the formula up.  You can even hear the formula if you put your ear on his back.  Usually, he will call back down once he gets the formula out.