Wednesday, February 8, 2012

Cardiologists and CHD Awareness

Caden has a cardiologist appointment tomorrow. It's his first one in four months (which is a good thing, because it means they believe he's doing well enough to go longer between appointments). But I'm feeling (unnecessarily) anxious about it. Like, the kind of anxious that's giving me butterflies in my stomach and making it impossible to sleep, despite how exhausted I am and how excited I was to be in bed before 11pm. I KNOW that it's most likely they will tell us he's doing great (after oohing and aahing over how cute he is of course). I mean, he smiles constantly, giggles at his sister, eats fine most of the time, hasn't had any signs of anything NOT being right with his heart. But I still feel that nagging fear, causing tension on the fringes of my days. There's such a sense of uncertainty for me about Caden's future. I know he needs more surgery at some point, I just don't know when. Or how I will know. Or what that will look like.

Maybe it's just the fact that he even needs a cardiologist. I mean, the second Adam walked into the hospital room and introduced me to the "cardiologist" I knew there was something very very wrong with our son. And after he was born, I held Caden, nursed him, loved on him, yet still had NO idea anything was wrong. So what if there's something wrong again, and I just don't know? All that to say, please be praying for us and for Caden tomorrow. I'm praying that he will astonish the doctors anew at just how well he's doing!

This train of thought, the uneasiness and anxiety, the "not knowing" have made me think a lot about the fact that I DIDN'T have a clue anything was wrong with Caden. It was a pulse oximetry screening that literally saved Caden's life. And for that reason, I am passionate about advocating for mandatory pulse ox for babies before they leave the hospital. In case you didn't read Caden's birth story, after hearing a murmur they checked his pulse ox, his was at an 89 - it has to be at least a 90 or else they send them to the NICU for further monitoring. I tremble to think what might have happened if they didn't do pulse oximetry at the hospital where Caden was born, or if the nurse had bent the rules just a little since his level was hovering anywhere from 89-93 . . . In fact, we had them track down that nurse so we could thank her for saving our baby's life. She prayed over Caden and grasped our hands tightly, reassured us, and lifted us up to the Lord. She saved us that day in more ways than she will ever know.


I read a post by Matt Hammitt (a fellow "heart parent," as well as a singer that I am apparently a little obsessed with) this morning. And his words have stayed with me all day:

I'm what we've come to call a “heart parent”, and from my family's wounds, faith has risen up in me. I want to make being Bowen's daddy count, and my guess is that if you are a fellow heart parent, you have that very same desire.

Imagine if we all rose up to claim the beauty of our struggle, found hope in what looks to be hopeless, believed like children, for our children, that a better world is coming. Think of what it would be like if we embraced what felt wrong as the birth of what will one day be made right. What if we found each other, walked, laughed and grieved together? Imagine if, together, we traded in all of our pain to claim an amazing purpose.

Beauty from ashes, joy for sorrow. And the promise of wholeness; if not now, than some day. Because when anxiety fills me and troubles my heart, I must rest fully in the promise that it will all one day be made right. And I trust completely (though not always easily) in the Truth of a good God who loves Caden and has a perfect plan for his life.
Congenital heart defects (CHDs) are more common than you might think, and nearly 1 in 100 babies are born with a CHD. I don't want to scare moms, especially new ones (there's already plenty that scares us as new moms right?) But I do hope and pray every single day that I might be a good steward of Caden's story. And if his story might help spread awareness and ultimately save lives, than I am honored to be even a small part of that.


I have also been so grateful for the opportunity to help fellow heart mom Ruth (and Stefanie) put together the Faces of CHD page on Pinterest. And, let me just tell you, I have sobbed with both grief and joy over each and every beautiful face on the board. There are nearly 200 stories and pictures that have been shared, and the range of stories, of defects, of outcomes . . . it's staggering. I would love for you guys to go read some of the stories, share, repin - and it's not too late if you still want to share your story too (just send me an email - Becca1612 at hotmail dot com)

*I'm going to try and post a little more throughout the week about CHD and will probably link to some other heart mom's stories and posts as well. They have all done a much better job than me at being on top of all this. Probably because I am so NOT on top of my life that there is currently 6.5 loads of clean, unfolded, and undoubtedly very wrinkly, clothes strewn across my house right now.

4 comments:

  1. I went 3 months not knowing a thing! Definitely don't feel bad about not knowing right away! 3 months AND a nicu stay at 7 weeks. At the ER the first time they asked me if he had a heart defect and I said "No!". Yeah, he made a liar out of me! ;-)

    I totally understand about the cardio appt. I LOVE going to our cardiologist because I get to know for sure if things are going ok (or not... thankfully haven't had that happen yet!) Seriously, I wish I could go once a week!

    Good luck tomorrow and I'll be praying for you all!

    Oh... and I too just can't believe we even *have* a cardiologist!

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  2. praying for a great cardiology appointment today. AND I love your CHD posts... you are doing a fine job of raising CHD awareness :)

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  3. Praying for you, friend. On a similar-but-different note, Gabe has really been struggling with anxiety lately, related to his heart attack in October. Even after he got the most amazing report from his cardiologist Tuesday. Praying the devil away from you, and asking God to give you sweet peace about your beautiful little boy. Love you!!

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  4. Aww, praying for you all today!!! You're both so brave :-)

    -Amelia

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