The CDH community is pretty tight and with the advent of THE INTERNET we are able to follow each others' stories all across the country. Every day I hear about a baby who is fighting or who has gone to heaven. I pray for all of them, but sometimes there's one in particular who really gets in my heart and who I really really root for in a different way. There was Samuel, the first CDH baby whose story I followed, shortly after we had gotten Clara's diagnosis. He went to heaven on Christmas Eve. There was Grace, who I was certain would live, it was just a matter of time. She didn't. Her mother is on my heart every single day. Now, there's another baby who has really captured me. His name is Levi and he lives in Alabama. He's been on ECMO for 43 days. That's insane. Clara was on for 22 days and that was a long run. He's already been through two circuit changes (the one circuit change Clara had is what just about did her in) and this circuit is running out of time. Therefore, so is Levi. The doctors were prepared to give his parents "the talk" this weekend, but miraculously, Levi has inched back off that cliff. His parents are faithfully giving God the glory every step of the way and trusting Him and believing in the miracle they're pleading for. I want Levi to make it. He's all I can think about today.
This blog is not for me to post about every sick child I come across. I am striving every day to find some kind of new balance in my life where I can embrace these families and support, encourage, and pray for them while still trying to live life with the miracle God graced us with. I haven't figured it out yet. What can I say? I'm just a changed person. However, tonight I am asking all of you who were enamored with Clara and who prayed her through those dark dark days to petition God on Levi's behalf. They're trying to "cap off" ECMO and see if his lungs can do the work they need to in order to support his little body. He hasn't had his repair surgery yet. He has heart complications as well. He's a really sick boy. But we've seen what God can do with really sick babies. I hope He'll do it this time. I really do.
Praise Be To God.