Our CDH Awareness Day - 1 yr later

One year ago today we found out about Makenna's CDH.  I can still hear the doctors voice when he said "I do see a problem with your baby."  I remember after he spoke those words, he paused for what was probably only a couple of seconds, put his hand over his mouth, and took a deep breath.  I remember it vividly.  Like it was yesterday.  I could tell in that moment he was about to say something bad.  Really, really bad.  And in that incredibly short pause, I remember thinking a million different thoughts all at once.  I remember thinking "Problem!? What problem!?  Is she going to die? Will she look different?  Is it a genetic disorder?  Why wasn't this 'problem' found on the other 20+ ultrasounds.  Talk to me! Why aren't you telling me the problem?!"  And then he it happened.  The silence was shattered and seemingly so was our world.  It was at that moment on August 13th 2013 we learned how three little letters (CDH) can
change your entire life in an instant.

As we left the hospital that day I remember thinking "What did we do to deserve this!?"  I don't smoke or drink, ever, I ate all the right food, took my prenatal vitamins everyday (even before I was pregnant), and didn't take any medicine (not even tylonol) while I was pregnant.  I even spent 14 weeks in bed to save her life during the bleed and prayed for her safety every night.  It didn't seem fair that people who know they are pregnant and decide to smoke and drink, have perfectly healthy babies, but we would not.  I remember thinking "why are we so unlucky??"  Why us?

A year later I now realize that special kids are given to special parents.  We proved early on with the bleed that we will always do what is best for her and are willing to do whatever it takes to keep her safe.  We proved our strength, love, and devotion to her.  We didn't get stuck with a child with special needs.  We earned her and she is a blessing.  We didn't get her because of something we did wrong.  We got her because of everything we did RIGHT.  God knew that of all the people in the world, we are the perfect parents for her and she is the perfect daughter for us.

Our sweet little girl is everything we ever could have hoped for and so much more.  She makes everything worth it, but don't get me wrong.  That doesn't make everything easy.  Lets' be honest, life after severe CDH is hard and recovery is long, especially when it is further complicated by the need for brain surgery and hydrocephalus.  In the year since we found out about CDH everything has changed dramatically.  I know longer teach first grade, I now spend my days obsessing over her head circumference, keeping up with her extensive schedule of therapies and appointments, and I obviously worry non-stop about my precious babies health and development.  It's scary seeing her fall farther and farther behind other babies her age.  I want her to play with my friends kids and learn from them, but we are forced to limit those interactions because of germs.  It is more safe to stay home, alone, hiding out.  Many of the friends I had prior to CDH have given up on us and others have kids or teach kids and that makes visiting tricky.  So yes, that is the ugly side of CDH.  The ugly side of our reality the last year.  However, this is our reality because Makenna is a CDH suvivor.  The word 'survivor' makes every delay, every missed play date, every doctors appointment, surgery, and all the stress we have felt this year totally worth it.  She survived something that only 50% of babies survive and not only did she survive, but to quote her doctor "she is a wonderfully precocious little doll."   She makes it easy to stay positive.  Every time she reaches out for me and every time I hear her say "mom mom" I am reminded why I love my new life.  It might be a crazy life, but it is our life, and we wouldn't change it for anything in the world.  Changing our situation takes away the Makenna we love.  We don't want to change her.  We love her exactly how she is and exactly how God made her.  God doesn't make mistakes.  Her CDH isn't a mistake. She was put in this Earth and survived so that she can do great things.  I said this before she was born, but now that she is here, I know it is true.  She is already loved, followed, and prayed for by literally several thousand people all over the world, many of which we have never and will never meet.  Her story has already reached thousands, inspired many, and has taught a huge number of people not only what CDH is, but that yes, your baby can survive CDH and no, you don't need to abort.  Makenna at 10 months old has already saved lives and given hope to other families.  With out even realizing it, she is already doing great things and making a difference.

We will never be able to thank the doctor enough for diagnosing her CDH before birth but thankfully there is NOT a problem with our baby.   She is perfection.

I can't wait to see what the future has in store for her.  But until then our sweet 10 month old has a smile that lights up not only her face, but also the faces of everyone she sees and a laugh that is contagious.  She is easygoing, strong-willed, smart, social, charming, adorable, and absolutely positively the light of my life.  We love her more than words can describe and we are so blessed to be able to call this wonderful miracle our daughter.  How did we get so lucky!?