Today marks the two week mark until the next open heart surgery! I've already been going through a gammet of emotions - relief, fear, anxiety, dread - and they are probably just going to escalate from here! Nevaeh is actually doing quite well, not needing the oxygen nearly as much the past few nights. If she has needed it, it has only been for a little while & not the entire night! The bad part is that the regulator for the oxygen only goes to a half a liter. So if this puts Vaeh over her limit of 90%, I have to get up and turn her off . . . until she alarms that she is too low & then I have to turn her back on. So needless to say, I haven't been getting much sleep at all. Last night was by far the worst night. She had a rough night coughing, vomitting, etc. And she did have some need for the oxygen. I did get to sleep from 4:30 to about 6:30. Luckily Jon was able to come home . . . Daddy to the rescue! He let me lay down for a little while before Vaeh's therapy session. The thing that compounds the sleeping issue is that Vaeh hasn't been sleeping in her crib (so I've not been in bed, but on the couch) for nearly 2 weeks! She wasn't comfortable & was spitting up so much that she does better in her little chair in the living room. What we won't do for our kids!
I know that the next couple of weeks is going to 'd r a g' on. I am not looking forward to the waiting, or to the prospect of having to hand my beautiful little girl over to the docs for her next surgery. I've had such terrible thoughts lately that she doesn't make it out of this one & the thought of that terrifies me! I'm sure that I'm not the only 'heart mom' (as we with CHD kids refer to ourselves) that has ever had these thoughts, but I'm the one thinking them right now. I've encouraged other mom's in my situation that all will be fine & that God has their child in His hands. I know that that is exactly where Nevaeh is - in HIS hands, but it is so much different when you're looking in the mirror & trying to say those words. They don't come as easily for yourself as they do for others! Please keep us in your prayers, that everything goes according to God's plan & that we make it through the next month or so!
Also, just a little update on some of our heart friends! Addisyn, Ashcer & Emma are all at home & recovering nicely. Another little gal - Karly - just went home & is doing well, and Elijah just made it home today! Keep them in your prayers that their recovery continues to go well! Also, keep little Stephanie (aka "The Champ") in your prayers today. She's in the OR today for her third open heart, so pray all goes well for her! Thanks for checking in on us!