October 9, 2011

Prayers for Baby Levi

CDH has changed me.  I may look on the outside like I'm carrying on with life, totally normal, but on the inside I am constantly carrying a burden for sick and dying babies that I never would have imagined would be on my heart.  I hurt so deeply for other families who are facing the fear and uncertainty of this diagnosis, and many many others.  My eyes have been opened to the pain of sickness, especially for children.  And so I spend a lot of time every day praying for babies and their families.  I've found that when I'm feeding and rocking Clara is some of my most quiet and still time each day and while I rock, I pray.  I pray for the mothers who inexplicably had to say goodbye to their babies.  I pray for babies who are fighting for their lives.  Not just diaphragmatic hernia babies, but babies born with all kinds of obstacles and challenges every minute of every day.  I pray for families who are expecting sick babies and don't even know what a ride they're about to be on.  I pray for them because you prayed for us and I believe it matters.  There's a lot I don't understand.  But I pray.

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.

Follow Levi on his mother's blog: http://werebringingupboys.blogspot.com/ if you're interested.

Praise Be To God.


  1. Chrissy ~ I prayed for Levi last night, and I told Chuck about Levi today. Once again, I placed my hand on his picture and prayed for him, his doctors and nurses, and his mother/father and brother. Thank you for sharing:) Love to you, Robert and Clara from Elberton...Mary Ann Martin

  2. May GOD be with this sweet family and give HIS healing touch to little Levi ..... may HE also help us remember those who are really hurting when we complain over such little things. Today I will count my blessings and pray!

  3. Chrissy, I have been following Levi too and praying for him and his family. And everything you said here about being different than you were, about being aware of children and struggle in a new way... yes. And what you said about holding these babies in your heart and holding their families in the quiet moments of your day... yes.

    Our Samuel was in the hospital 5 months, has now been home for 3, has taught me so much about life and love and faith that I don't even know how to articulate. But I knew from reading your post today that you know. There is beauty in that, Chrissy, to find another mama who knows things in your heart that you cannot say. Thank you for that. And thank you for sharing the Levi-watch. And your Clara. And your journey.

    Corinne, mama to Samuel, lcdh, born Feb1/11

  4. Baby Levi will get a lot of prayers from the West family. Thanks for posting this.

  5. Praying for little Levi, may the Lord have mercy on him and his family. Your little Clara Mae captured my heart when I first read about her, can't explain why, unless she needed more prayer warriors. The same may be true for Levi.

  6. As a fellow CDH mom to a survivor, I couldn't have said it better myself. I too find myself hurting so much for these families and all the fear and uncertainty in the whole CDH journey. Each story takes me back to the days our son was on ECMO fighting, his condition changing sometimes minute to minute - it is still hard for me to think about. I too followed Grace and I really thought she would make it and was so sad when she didn't. I still don't understand it. I just look at my son running around just being 2 and sometimes I just can't believe that he survived everything that he went through. I thank God every single day for this gift. Thank you for expressing so well what I think so many of us CDH moms feel.

    Mom to Andrew 6/15/09
    CDH/ECMO survivor


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