a new stellan update.

to Him be the glory
God answers prayers. Just not always in the way or in the time frame we want. God answers prayers, but the outcome we hope for, and beseech God for, is not always the outcome God has in mind.God hears our prayers. But God still does what He, in His sovereignty, is going to do. He listens to our prayers, hears us each and every time we speak to Him, think to Him, or even groan to Him. God is affected by our prayers and He wants us to pray. But God is still God and our prayers do not change God or His mind, at least not in the way we sometimes think. He knew we were going to pray before we ever prayed. He knows the past, present and future all at once. He listens to our prayers, but our prayers don't change things. God changes things. Yet nothing changes for God, per se. If God changes His mind, because of our fervent prayers (Which He very well, might, so please keep praying!!), it will be something that God already knew would happen. He knew we'd pray. He knows if Stellan is going to live a long life or die soon. We still should pray, still need to pray, but God knows what He is going to do already. And, even if we do storm Heaven on Stellan's behalf, God still may choose to take Stellan home to Heaven. It is our job to communicate with God, to love Him, and, ultimately, to trust that whatever He decides is best. Did you know that prayer can sometimes do amazing things for the one who is praying, too!? Prayer is talking with God. We are to talk to God. If we love Him, and have a relationship with God, we will want to chat with Him, and tell Him how wonderful He is, and beseech Him with our requests.And, in the end, God will do what God alone wants to do. These can be hard thoughts to swallow, and even more difficult concepts to understand fully. And it gives me peace that I cannot fully understand God, or how prayer actually works, or what His will really is.All I need to do is to know God. That is enough for me.See, God is GOD. His ways are higher than mine. I am human, mortal, made of mere flesh and blood. Sure, I have the Holy Spirit living inside of me, and a very capable brain, but I am still made right now for this earth. It is impossible, literally actually honestly impossible, for me to ever (while still treading this earth that is not my ultimate home), understand God in the same way that I can understand a mathematical equation. I believe that Stellan's course has not altered. He had terrible heart problems in the womb, was born with no sign of a problem at all, and now finds himself in the PICU for the exact same heart problem again. The problem from which we were so sure he'd been fully healed. This new situation with our baby is not new for God. He knew this and had this path set in motion for Stellan. Nothing is altered in His book, although to us it can seem like things with Stellan are off course. But God is not taken by surprise that Stellan's heart is sick. God didn't try to heal Stellan completely when he was born, and then now say "Whoops, I guess My healing didn't totally take. Let's see if I can try this again..."But that doesn't mean that we shouldn't keep praying. That also doesn't mean that we might not want to rethink what a miracle really is. It's worth rethinking our concept of miracles performed by God. It's worth considering the idea that even my friend Angie's baby daughter Audrey and her death were miracles. More on that later, my mind is busy with thoughts about God, praying and miracles, but they are not in post format yet.--------------------------Stellan had a really long night. The steroids and heart meds he is on are making him very jittery, restless and manic. He hardly slept a wink, is royally ticked off about the oximeter on his foot and the iv in his other foot, and won't eat. We offered him bottle and breast all night, but he was too wound up to want anything to do with either. The iv in his hand blew and the one in his foot is only so-so. I am hoping it stays, though, because a central line is the next step. Although, from what I am learning, especially from my friend Nate who has been there with his wife and daughter before, getting one of those put in would be better than all the poking he'd been enduring each time he needed a new iv put in. Stellan's heart is still in SVT and, although it comes in and out, he is more often in SVT as of last night and this morning. His most common pattern when his heart rate does come down is to have 5 beats in tachycardia, a long pause, and then 5 more. He's having lots of prolonged QRS and some episodes that look like V-tach (Ventricular Tachycardia). His cardiologist assures us that he is not indeed in V-tach, though (Praise the Lord, because I understand that this is extremely deadly). The doctors continue to check Stellan's heart function, to see how he is tolerating this prolonged fast heart rate. His heart rate is thankfully lower than it was, though, and now runs in the 220's or so. The doctors are still trying to find a way to get Stellan's heart to calm down; right now they are raising the amounts of Amiodarone and Esmolol (the beta blocker they had originally wanted to stay away from because of the airway trouble Stellan is already prone to) they are giving to him in his iv.Cardioversion and shots of Adenosine (the drug used to temporarily stop his heart with the hopes that when it restarts it will be beating slower) are off the table at this point. The reason for this is that every once in a while, Stellan breaks out of SVT on his own. Therefore, there would be no reason at all to medically break him out of it to see what happened. He's already having moments of breaking out of it. Of course, he returns right away to SVT, so that's not good. It simply means that those two methods would serve no purpose for Stellan right now.I will update my blog when I can, but I am updating much more often throughout the day and night on Twitter, too. You are welcome to click here to follow me on Twitter. That way, you can get my updates on your computer or your cell phone (depending on how you set your Twitter account up). Otherwise, just come to my blog and read my Twitter updates here (the most recent three Tweets always show in my lower left sidebar here on my blog) even if I don't have any new posts up."Now to him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20, 21