Lilah saw her cardiologist today and got a great report. Her doctor was pleased that she had come through an illness without any negative effects on her heart function. She was not nearly as cautionary as I had originally thought about Lilah getting sick. Obviously she still wants us to be very careful, but Garrett can continue at Mother's Day Out--which I am so thankful for because it took us months to get him to like it and it wouldn't be very fun for me (or him) to drag him along to our countless appointments (Lilah had 16 doctor visits last month!!). Heart wise, things are pretty much as good as they can be right now, given the severity of her condition. She is still on oxygen, but Dr. Bremer says it's not because of her heart. We are trying an inhaled steroid and hoping that gives her lungs the "bump" they need to overcome the need for the extra O2.
It has been a really hard week for me....really sad and totally overwhelmed. It seems like Paul and I take turns as the comforter and the one needing the comfort as the weeks pass. I'm sure this is no accident.
I am constantly reminding myself to take it one day at a time, remain hopeful, and be thankful. I think I forgot to post this, but Paul, Garrett, and I all had normal echocardiograms! We have switched Lilah to some special, anti-reflux, liquid gold, formula...and...she is gaining weight!!!! I have been totally, crazily, obsessed about her eating, so this gives me some peace:) Also, although she is still very hypo-tonic (low muscle tone), she is gaining more head control by the day!! And, my mom is here, as great logistical and moral support! Here is a sweet picture of her (before the oxygen) to remind you to pray:)