Doing Things Her Way

So, Kaylie was doing great....and then decided that she needed to show us that she is still the one in control and digressed a little bit. We had been on full breastfeeds, but apparantly she doesn't have a "nutritive suck", meaning she uses more energy to get the breastmilk than she earns from it, so she lost a lot of weight and started needing more oxygen and her heart rate would drop very low, which was scary. But now they are giving her full feedings through her nasogastric tube so it doesn't take any energy to get and today they will start foritfying my breastmilk with extra calories so she will put on some fat so she will be able to maintain her body temperature and graduate to an open crib. We found out that she does have a genetic condition, but it isn't as simple as something like Down's Syndrome, so once they figure it out, I will tell you all about it. She is also still showing signs of an infection, but they can't find proof that she has one anywhere, so they are beginning to think that it may be her genetic condition that may be causing what they are seeing and not an infection. Simply put, she still isn't quite ready to go home and more waiting for more test results which will most likely lead to more scratching of the heads (no wonder why so many drs are bald!) We'll keep you all updated and hope you all enjoy Conference this weekend!