I wasn't going to post tonight because I don't have a ton of news and I don't want to totally burn out on writing. But I've spent the last hour or so reading the blogs of other families who are in various stages of this CDH battle right now and I am just so overwhelmed with thankfulness and gratitude for Clara and where we are right now. She has been a very very sick girl and we have stared death in the face, but it is absolutely incredible how well she is doing now, especially for where she has been. I am realizing more and more that most of these babies just don't do this well. Weaning off of the ventilator and oxygen is extremely difficult for lots of these babies. Many of them face secondary infections. For many of them, withdrawal is a huge battle. For almost all of them eating is an extremely slow, tedious, frustrating and difficult experience. Clara surprises us daily with her strength and vigor and the giant leaps that she is able to make when nobody expects them. We have moved slowly (or perhaps just intentionally, with purpose) with many things, but the fact that we have not had any major setbacks in weeks is just astounding. I want to be sure I'm not taking this for granted. I want to be sure that I am not allowing my own impatience and fatigue and trivial frustrations to eclipse the reality of how remarkable her recovery has been. Our God is so good. He has been so faithful to us. We are experiencing His grace in the deepest and most tangible way right now. We have done nothing to deserve such rich blessings in our lives and yet they are poured out on us, day after day, even when we don't always appreciate them as much as we should. I just feel so convicted of that right now and wanted to take a moment to reflect on this journey. We have learned so much, grown so much, loved so much. We have experienced the power of prayer and community in a way that many people never do. As I reflect on all of this, I just feel overwhelmed with feelings of thankfulness and gratitude - to the many people praying for Clara and loving on us, but most of all to our Creator and Sustainer and Giver of Grace. Praise be to God.
*New photos coming tomorrow, for sure. I promise.
God Bless you all. So happy that she nursed today! Loved the "milk coma" picture on Twitter! Her sweet pictures, I look forward to!ReplyDelete
Amazed and thankful that God is so wonderful!
Our God is Good that is for sure and I am so glad that Clara is doing well. We still pray for her every morning at 6am.ReplyDelete
Randy and Annette
Thanks for reminding us how blessed we are...ReplyDelete
As someone in the business....yes Clara is defying the odds :) God is amazing and so faithful in our moments of struggle. Still rooting for her, praying for her and enjoying telling all my surprised colleagues that my friend's baby with CDH s/p repair and ECMO is breastfeeding :D :DReplyDelete
Amen and amen.ReplyDelete
Your happiness rubs off on all of us. Thank you for helping us all reflect on what is good in the world! I know my prayers were lighter in spirit today. GOD is so-ooooo good and I thank him.ReplyDelete