I've had that nauseous feeling in the pit of my stomach for the last few days.  

Life has been gloriously "normal" for us for the past several months, and we've been loving it.  Most days, it almost seems that Derrick is just like any other almost eighteen month old.  He bolts out the door anytime it opens, he repeats everything he hears, he demands music anytime we're near the computer or in the car, and he's so full of energy that I'm the one that crashes at the end of the day.

And then there are those moments, like the ones where he's running and squealing with delight then has to stop and sit down to catch his breath.  Or the ones where we have to make him sit down and rest so we can check his sats because his lips look a little bluer than usual.  

Or the moment where the phone rings and it's the cardiologist's office, calling to remind us of Derrick's appointment on Tuesday.  Ugh.  Let the waves of nausea begin to crash over me.  

I seem to go into panic mode every single time D's number's up to go to the cardiologist.  Every time.  It's crazy, because part of me would really rather go more often, you know, just to "make sure he's doing ok."  I guess it's a good thing that we don't go more than every three months though, because I'd probably be a basket case.  I'm just always afraid that we're going to hear something new; something that we don't want to hear.  

For a single ventricle kid, Derrick has done amazingly well.  He has one of the most severe CHDs with a few added twists and turns and has breezed through thus far.  Don't think that I don't thank God for that every day.  Every. SINGLE. day.  I know what a horrific journey we could have been on, yet up to this point it has been so much better than we could have imagined.  Not easy by any stretch, but really, it's been ok.   It's been manageable.  

Maybe it's the overwhelming number of heart friends we've lost over the past several weeks that's making me worry so much.  Maybe it's my dear friend Elizabeth, who is having to fight pretty hard right now after having a small stroke as she waits for a new heart or for the FDA to approve a much needed device to help her tired heart.  Only they won't approve it until they "have a reason."  Maybe it's watching what she goes through as an adult CHDer that really hits home for me about what Derrick may face someday. 

Maybe it's D's sweet smile, contagious laughter and precious way he says "muh moo" {love you} that makes my heart race and my eyes fill with tears as I think of how our world could change.  

Maybe I need a little more practice giving my fears over to the Lord...

‘Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.’ Isaiah 41:10

Will you please pray for D's appointment to go well?  That he behaves so that they can get a good look at his heart, but that his little heart is as healthy and well as it has been and can be?  We would greatly appreciate it! :)  

I'll update you Tuesday afternoon, after we return from the fair!

Dinner tonight at dinner at Wild Wings.  He was saying the blessing in his new "hat." 
Seriously, there's never a dull moment! Ha!



  1. I know exactly how you feel. Every single word you wrote describes our life. People outside of our CHD world look at me like I'm crazy when I say how blessed I feel that Aly has had such a bump free road. They don't understand that some children have a much steeper slope to climb. Praying for Derrick to have a great check up with another 3 month pass!

  2. I can sooooo relate! Prayers for nothing but good news tomorrow!

  3. Oh Shannon.....I feel for you. Every heart parent feels that way and gets anxious at every single appointment. Mainly because we never know what we are going to hear and we know fully well that things can change so quickly.

    I really think it gets harder as your children get older because we have bonded so much. We know every little smile, giggle, personality trait, etc. They are no longer this little infant that only sleeps and poops. They have become our child. The one we snuggle with, laugh with, play with and cheer on at every milestone. So many memories and it is hard thinking that it could all be taken away.

    You know that I am always praying for Derrick and your family!! Praying for lots of GOOD news at his appointment!!

  4. Sorry to say, but that fear never goes away! Maybe that makes us better moms- keeps us on our toes. But holding your breath as you watch the echo? I still do it 5 1/2 years later. Derrick is very lucky to have you and from the posts and those sweet smiles in his pictures, it seems as if you are pretty lucky too!

  5. Oh yeah, good luck tomorrow! Praying for a wonderfully normal visit!

  6. Praying for tomorrow and watching for an update. Everything you said covers just how I feel, too!

    Even though everything seems great, there's always that knowledge in the back of your mind that your baby's heart just isn't right. It makes every sweet moment bittersweet.

    Neysa (Mason's mommy)

  7. Good Luck!

    It's always so hard for those appointments! I get so nervous the days before. I know at one point in time , they will tell me they see a decrease in heart function and he needs the Fontan.. I think that just sits there in the back of my mind.

    It's not like taking them to get a booster shot, it's a toddler and a cardologist, looking at his heart and the function. It's not an easy thing to deal with.

    Good luck!

    Mommy to Colin - HLHS 18 months

  8. Derrick (and you and Justin, too :) is always in our prayers, but we will be praying specifically for the most boring, "things are looking great" appointment on Tuesday that you could ever imagine. It's never easy, Shannon, this being a heart mom, but remember the verse printed above. You're never alone, not for a single second. Hang in there and hold tightly to God's hand.

    Lots of prayers for all of you on Tuesday~
    Kati, Rocky, Evan & Brycen

  9. Oh, the anxiety monster ... we battle it here in Washington state too! We will be praying for a fantastic report from Derrick's doctors! Love to you!

  10. praying... praying... praying. God is good!
    Heart hugs,

  11. Will keep D in my prayers for sure! Love watching him grow through stories and pictures and good reports!! on the blog.


  12. Sweet friend! I get it!! And am praying for wonderful, hope-filled, report from the doctors!

  13. It would be an insult to say I know the feeling. So I'm not. Nothing more than that Hunter and I will say special prayers for D today!

    And here's a verse from the same chapter..just lines above (41:13)
    For I am the LORD, your God,
    who takes hold of your right hand
    and says to you, Do not fear;
    I will help you.