*WE HAVE ANSWERS*

We went to see Dr Pfeffer (the pulmonologist) on Wednesday and FINALLY got some answers as to why Delilah stops breathing!!! It turns out that her GE Reflux is so bad that it has caused a lot of inflammation in her throat and lungs which is causing a slight pulmonary obstruction, and she is aspirating, or breathing in, her stomach acid (and everything else she is refluxing) which is causing the atelectasis in her lungs as well as the low lung volume. When she breaths the refulx into her lungs it causes her to stop breathing as well as the inflammation can flare up and cause her stop breathing as well. So that's whats wrong! When we got her upper GI done her doctor told me that she only refluxed twice and so she had MILD reflux but when i saw the pulmonologist she said that most babies even with bad reflux don't actually reflux on the upper GI so being that she did it twice means that her reflux is a lot worse than we thought. So with all this being the problem Dr Pfeffer kept her on her Prevacid and put her on Zantac (for the reflux as well), Zithromax (to help empty the stomach quicker therefor not allowing her to reflux as much and help get rid of the atelectasis) and QVAR (which is an inhaled steroid to help with the inflammation in her throat and lungs). We do all this for a month and go back to see her in July to see if its helping. Dr Pfeffer also ordered a pulse oximitry test for 2 nights to see what her oxygen levels are at night. The respiratory therapist got the data off our cardiac/apnea monitor and it showed that she was having mild apnea spells almost everynight and the monitor only goes off if she stops breathing for more than 20 seconds. The times that the alarm has gone off she stops breathing for almost 2 minutes! If her oxygen levels at night are low then she wants Delilah to be on oxygen at night. We do the test tomorrow night and Saturday night so we will know next week if we will need to have oxygen on her at night or not. If the meds don't help when we go back in July then we will do a sleep study and consider surgery to fix the flap in her stomach that is allowing her to reflux so much. The weirdest part about all of this reflux stuff is that before the first breathing incident she never spit up, then after the not breathing episode in April her dr put her on reflux meds which made her spit up a ton. We changed meds after a week and it helped some but she still spit up with the meds. Now we have to thicken her feeds with rice cereal to help her keep it down but its just so strange that she didn't spit up until she was put on the reflux medication. I am so happy to finally know whats wrong and how we can help Delilah. I'm so thankful that it wasn't a problem with her brain or heart. It has been so hard to put her through all of these tests and frustrating that she might not have needed them at all. Her pulmonologist asked us why she had such and extensive work up and testing when her dr thought it was just reflux and why if that was the case her dr didn't refer us to Dr Pfeffer sooner. I understand that her pediatrician doesn't specialize in reflux or any speciality for that matter but I'm so confused that after her first chest xray that came back bad she didn't refer us to a pulmonologist before doing all the testing on her brain and heart. I guess hind sight is always 20/20. But the important thing is that Lilah is now on a treatment plan that should help her get better and that this wont be something (my fingers are crossed!) that we will have to deal with forever.