I wish I could give you more information but we don’t have a lot. Elijah is very stubborn, and knows what he likes and what he will tolerate or not. He teaches us lessons everyday about not being pushed to hard or he will retaliate. With this being said we have let him lead us both yesterday and today. He proved to us early yesterday that he was not going to let us pull extra fluid from his body, he likes it. So the doctors and nurses let him keep what he had but did not let him add anymore yesterday. Before bed last night the staff started puling just 5cc’s off of him over an hour at a time (this is equivalent to 1 teaspoon an hour). they did this until about 3 am then Tiff upped his out take to 10cc’s an hour (2 teaspoons) and we are going to stay here for today, Eli is accepting this change. He is using his heart on his own even on Ecmo but just enough to let us know he is still here. He has started to have a Arrhythmia, Because of this the staff decided this morning to shock his heart, to get it back to a set pace. Thank God it worked, they also added a new medicine to control the Arrhythmia. He is being weened off his blood pressure medicine, and handling this ok. Elijah has a very sick heart.
Baby Elijah is still opening his eyes and moving, this is good. As his parents it brings us joy when he looks at us, but also it brings a heavy heart. How is it possible to feel so torn about things, it is sad to see your son wanting you and knowing you and yet I can’t help feeling like I can’t help him. When Ron talked to him this morning Elijah opened his eyes wide and looked right at him, how awesome. I let him know all the time I love him, and how proud I am, how he is so strong and amazing, he is beautiful and he is not just my son, but daddy’s and Gods. I tell him how he is bringing people to him everyday, and about how much he is loved and how everyone is praying across the world. Lexi goes to Catholic school and her entire school prayed together for E this week, I have Dan and Holly from our church Riverview putting the prayer chain in order, we have St Thomas that prayed last week at all their services, we have our friends, and family sending out Eli’s story to everyone, Tom Izzo called me personally and we have Michigan State Basketball team thinking and praying for Eli (thanks Alex), People from Canada, United Kingdom, Jordan, Arab, Australia, Singapore, etc reading about Elijah. We have 15000 hits on the website yesterday and over 5000 followers. This is the one thing I know, God is using Elijah for, to connect us with love and compassion. To bring us closer together and to him. Today make sure everyone hugs their family tighter and lets them know how much you love them and how grateful you are for your life with it’s little hiccups. My friend Mary Jo commented on an old picture of my beautiful children from a family trip to Grand Haven and it made me realize even through everything we have been going through how grateful and blessed I am. I love all of my children so much and this message is for them. Carter, Lexi, Paige, Ryan and Elijah when I look at you I see good, I see hope, I see beauty, I see God. I love you Mom.
This is the picture Mary Jo had me look at this morning.
Eli this morning, Tiff made a heart patch for daddy. Thank you Tiff!!! She also gave him back his blankie.