These last couple of days have been terrible for me and for Noah too. You see, Noah is basically a drug addict. He has been on morphine and other narcotics since he was born due to his surgery and post op. He has been on methadone and adovan as substitutes for the "hard drugs". They have finally gotten him off of the substitute drugs. Sort of. He is having terrible with drawl symptoms. Heroin addicts get methadone to help them come down. He is irritable, sweaty, frustrated, jittery (like the littlest things startle him), he doesn't get into a real deep sleep, so they decided to put him back on the methadone and adovan for another round of weaning. This way he can at least be a bit more settled and he NEEDS real rest. Anyway he can get it at this point. So, he is back on the pain meds and he is more calm. He is also on a patch that they use in cardiac babies sometimes, to help keep their bodies calm, in order for their oxygen saturation to keep higher. It is like a pain patch, but it delivers a small amount of sedation meds, constantly in order for his body to be relaxed. His heart rate has been a constant 120 for days because of this. It is a calm, but ok rate for him. In fact, his pacemaker is keeping it at 120, not lower.
I'm not particularly sure why I am sharing all these details. It is not easy to be vulnerable like this, to put out all of the hard details, the raw reality. I mean it doesn't really make a difference for anyone to know every little detail, but maybe it gives someone a little bit of a detailed way to pray for him.
Want some more detailed ways to pray?
For his heart to be whole. I'm not being general. I'm being specific. May God truly make his left side of his heart there. Like, if God has to make it grow, the so be it. Whole. Working. Functioning. There. I know God is able. Pray with me.
For the blood vessels to his lungs to grow larger. They are quite small and it is a problem. He needs those larger to get more blood to his lungs.
For the clot in his top left part of his collar bone area (layman's terms) to be gone. Completely gone and that vessel to be healed and cleared of any other clotting areas.
For his oxygen saturation to continue to maintain above 70 on lower oxygen. (they did lower him to 2 liters oxygen today) praise God. He is so far, staying steady.
For his oxygen levels to his brain to be steady.
For him to be able to try out feedings at certain times, not continuous feeds. It is a step closer to him being more on track to bottle feedings. A semi-permanent feeding tube is still a big possibility, but I know my God is greater and bigger and mightier than feeding tubes. He can and is able to heal all needs and make the road rise up to meet Noah in this need. I keep praying for complete healing from all needs. I will not stop praying for it for the rest of mine or Noah's life. God is able.
I'm not really at a place where I have some lesson I'm learning or some sweet something to say about how God is so "gracious and gentle" with me...even though he is. I am just at a place where God is God and I am not. He will have his way with myself, my son, my little family that is strung apart all the time now. He will have his way. His ways are above mine. I have to trust him even when it is hard, even when it hurts and even when I have no strength left to trust him. That is when I have to just be limp in his arms and somehow let him do this, without me. Isn't that what he wants anyway? For me to let go of the reigns and let him drive.... I'm not sure I have even the slightest clue of what will happen next in our life. I don't even know what is next tomorrow. I have no use for a calendar or date planner. I know that at home Ava has dr appts coming up, there are lots of things going on at church that I wish I could put on my calendar, help with and be a part of. There are things that I wish I could do like make a meal plan for the week, go to the grocery store, vacuum, make the beds, play with my girl, have pillow talk with my husband. Those things are deep calling to deep, that is my calling and my purpose. wife and motherhood. Call me old fashioned or plain. Tell me I'm wasting a bachelor's degree, but I will tell you that there is nothing in life better than doing your God given calling and doing it with all your might. I suppose in this season of wife and motherhood, I am called to be uncomfortable, out of the ordinary, tired, strung out and completely spent in sacrifice and prayer over my children. See, every time the bad dreams creep in, the thoughts of "what if" and "please Lord, no" start to seep into my mind, I immediately call upon my Jesus and I know that's where he wants me. Constantly in communication with him. That is something that I will always take away from this experience, is constant communication with the Father. I cannot try to do things outside of who He is or His power. I am of no power or use if I am not doing the things He called me to do in His might. Whatever he has called you to do, do it with all His might. This road is far far far far far from over. This road is longer than I ever dreamed. This road doesn't end after we leave the hospital or after his second surgery or when he's three and done with the surgeries. This road could end at any moment though. Life is fragile. Noah's life is extremely fragile in this place and in this moment. Yet, if you really look at it, each of us, healthy or not, is unaware of our mortality. We, at any moment, might not be here. Savor every moment. Please do not feel sorry for us. Please don't ask when we will go home. Please don't ask if the doctors give us any timelines. Just pray, in the deepest faith you can muster, that God will heal our son and that we can all rejoice beyond any measurable means and worship God for hearing our cry and answering our prayer.
I am deeply thankful for every single person praying for us, for Noah. I am beyond words in gratitude for all the support, in its various forms. We are forever grateful and touched. We pray we can spread Christ in this place, in this season. We know that God can use this trial and time of deep need and sorrow (even), for His good, His purpose and His namesake. God will prevail. Always. He will save the day. Always. We have to be surrendered to what His ways look like, not how we wish they looked.
Noah is fragile, but God's not through with him yet. I am holding tight to the One who promises, because, He is faithful.