Answers!!

        Wow it's been a long time since I've been on here! I'll have to look through my pictures and update later.
        Yesterday we took Sophie to Primary's for, we thought, an echocardiogram. What got this whole thing started was that we wanted to be able to take Sophie off oxygen during the day. She's had *decent* sats and she can't seem to keep it on anyway and it's annoying when it wraps around her body while she's crawling around. We were concerned that if we took her off oxygen her heart and lungs would be working harder. She has pulmonary hypertension and we wanted to make sure that her not being on oxygen when she's technically not at 100% saturation wouldn't hurt her. When we got down there it turns out an echocardiogram wasn't ordered but there were other ways to tell if she had pulmonary hypertension. After 4 hours, a couple scans and other tests and an AMAZING team from cardiology we actually got more answers than we went there for.
        We officially got it approved to have her off oxygen during the day as long as we monitor her coloring! I mean, we were already doing it but now we're guilt free. They also increased her oxygen at night to 1/2 liter, not because she needs it but because oxygen is apparently a good treatment for PH. We now only have to give her Sildenafil (Viagra for her PH) 3x daily vs every 6 hrs. MUCH easier. We found out that the sildenafil is causing her reflux so whenever we take her off the one she'll be off the other.
        For a long time we've been told that Sophie was diagnosed with chronic lung disease but no one could explain why or what exactly it was. Then we were told that her lungs are technically fine. Which is really frustrating. More frustrating because if it's not something serious, the fact that they have her labeled that way means it's harder for her to get insurance coverage. Health and life. Luckily we know enough about the life ins. part of it so we covered her with 25k so that when she's an adult *if* she can't get approved she'll have 5x the face amount so at least she'll have 125k on her. That's at least something for her future family, we try to plan ahead. I'm glad we did but we were told yesterday that if you require oxygen for at least 4 weeks they label you with that so *hopefully* they'll take it off her records when she gets older.
        They took a look at her heart and saw that the right side is a little bigger than normal because it's been working really hard. Also, remember that surgery on her diaphragm 2 weeks after she was born? Her left diaphragm was paralyzed so they went in and tacked it down so it wouldn't float up every time she took a breath and allow her lung to expand. It was supposed to fix itself on its own. Well we saw yesterday that the front is still tacked down but the back side of her left diaphragm floats up a little when she breathes so her left lung can't expand fully. They talked to Dr. Barnhart (Superman) to see if he thinks it'll help to do another surgery. It's possible that if he tacks the back side down and her lung can expand fully then she may not require oxygen much longer. So when people ask why she's still on oxygen we FINALLY have an answer! But now with us using oxygen as a PH treatment at night at a certain liter flow we won't know when she's technically done with it until the PH is gone. Nothing but circles with this girl! Oh and they're still not sure why her hands and feet turn purple randomly but they're looking into it. Did I miss anything?!....