March 31, 2011–Congenital Diaphragmatic Hernia Awareness Day and, my last post!

Here we are a year from her last nightmare hospital stay, getting ready for her to turn FIVE and I’m ready to let the blog go.  Clearly it hasn’t been updated regularly for quite some time but it was still here, ready to be my therapy and outlet when I needed it.  Letting go of it is going to be my final release of the trauma we’ve endured at the hands of the beast.  Congenital Diaphragmatic Hernia.  Who knew about it before 2005?  Not I! Please remember this defect.  Please make sure your pregnant friends and family ask at their ultrasounds to check for it.  Remember we still have a 50% mortality rate and only research and awareness can change that.

March 31, 2005:  I was parenting a 4-year-old Ethan and a 9-month -old Jason.  We had no plans for another baby.  I had had an introduction to the horror of bad things happening to babies through reading Scott Household (the blog of my now friend Jenny Scott who lost her sweet Allie to cancer at 9 months), but nothing like that would ever happen to me!  Those things happen to other people.   I had NO inkling of what CDH was or that by the following March 31rst I’d be knee-deep in learning everything I could about it.

March 31, 2006 : Three of the CDH babies I “knew” were here and fighting and I had just finally decided to and started on decorating a nursery for my sweet girl.  I remember when I finally decided we would actually do it.  It just hit me that she needed a place to come home to and if she didn’t, then it would be my place to mourn.  I never looked back from that decision and how cute did that nursery turn out??!

March 31, 2007 :  Audrey’s first year was coming to an end, we were over our heads in awareness.  We were living it.  She had had I can’t even remember how many readmissions, 2 more major surgeries and 2 minor, one week-long stint in the PICU, and she received most of her nutrition from a tube.  She was thriving though and made it look relatively easy to live her life.  We celebrated by spreading the word.  Remember the billboard? the bus the print ad? the radio ad? Our little superstar.

March 31, 2008:  The first year an official “CDH Awareness Day” was created.  Nathan had just started traveling full-time and I was getting my bearings.  Audrey was awesome, NO overnight hospital stays, just a 3 for 1 surgery that year (2nd set of ear tubes, adenoids removed, and endoscopy), still tube-fed but working hard on eating, and adorable as ever.  This was the year we did the Dallas Child article for awareness.

March 31, 2009 My favorite Awareness post

March 31, 2010:  This was my wake up for awareness, my year to get slapped in the face with CDH all. over. again.  Literally, I had to recite her entire history at least 5 times  when she was transported to the PICU in February and stayed for 14 days.  That whole stay was surreal to me.  Her pnuemonia was so severe that if it would have gotten to her right lung (ie the one that does 85% of the work for her), we could have lost her.   By Awareness Day, we were climbing out of the fog and she was starting to get out of the house and back to normal again.  It changed her too though.  She had no memory of all the hulaballo about her beginnings.  This hospital stay taught her things I wish she didn’t have to know yet.  She was a trooper though and learned to work it well.  We made it.

Could that happen again?  Could she still reherniate?  Of course she could, maybe that would send me back to blogging, but for now?  I’m saying goodbye to this blog and letting go of the anger, hurt, and trauma this birth defect brought to our lives.  I’ve held it in for so, so long.  To those who have been here for the ride, I don’t think you’ll ever know how much your support has meant to me.  I’ll never forget Audrey’s first days when all we had to cling to was hope, faith, and your comments on the blog.  The power in your energy was palpable, it raised us up.  My friend Suzi was recently physically reminded of that time period with a visit to the hospital where Audrey fought, she texted me that it was unexpectedly emotional.  It struck me how connected y’all were to Audrey back then, she really did/does have an army behind her.  What an amazing gift.  Thank you from the depths of my being.

To my sweet, sweet girl,

How are you turning FIVE soon?  I mean, I know that you are  all big and everything, NOT a baby at all, but FIVE, really??!  You challenge and inspire me daily.  The fire inside you glows behind those gorgeous blue eyes.  My hope for you is that nothing ever extinguishes it.  You are a force to be reckoned with Audrey Jane, but one I’m grateful for everyday.  Your life’s journey  has been arduous thus far, but beyond blessed.  My heart bursts with  love for you, your brothers, your daddy, and our family.   I love you sweet girl.

Your Mama

My favorite CDH warrior

Now

Then

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3 Responses to March 31, 2011–Congenital Diaphragmatic Hernia Awareness Day and, my last post!

  1. Stacy says:

    Amazing! Simply Amazing! AJ is the finest and truest definition of a SUPERSTAR!

    Love this post and love the goodbye. I remember living and breathing this, sometimes like it was yesterday and sometimes like it was years ago.

    Love.

  2. Natalie says:

    Wow! How it all came back reading your beautiful post. From those early, horrific and terrifying days from the beginning to the scary re-live of it all last year. But most of all what hit me is all the in betweens and how truly blessed you guys are to have such a beautiful little spitfire – and how equally blessed she is to have such a supportive and loving family who has done everything to give her the life she has today. Love to all of you!

  3. Brittney says:

    Wow…as tears are filling my eyes i realize i should have waited until i got home from work to read this!!! So amazed by Audrey Jane and feel so lucky to be a part of her life 🙂 You are such an amazing mother!! Love you guys

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