Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Friday, June 8, 2012

Grieving for *those* parents...

I've been thinking lately about what we have gone through in the past year with Trey.  There were so many signs before he was diagnosed that we should have picked up on but didn't... and I don't fault us for that, we didn't know that signs of heart failure and we certainly didn't expect it in a newborn that was weeks old.  I've been thinking of when we first went into the Montgomery General ER and how he couldn't breathe, nor could they get him to stabilize.  It was an insane scene, so surreal... almost like I was watching it on ER, the TV show instead of living it.  I remember hyperventilating and not being able stop crying.  I couldn't even stay in the room and watch.  There were so many people running in and out, I just didn't want to be in anyone's way.

I then fast forward to the day of his diagnosis.  The shock of hearing something was wrong with his heart.  I remember thinking, crap, how am I going to find time to go to doctor appointments and schedule surgery?  I didn't realize that we weren't going home.  That Trey was going straight into the ICU until his surgery could be done.  I remember not being able to contact David and let him know what was happening because he was teaching a class at Johns Hopkins.  He knew I was at the ER but we had been there before and we weren't too concerned.  In fact, I told him not to leave work to come to the hospital.  I told him to come after his class.

I think about us then as if it wasn't really us.  I grieve for those parents.  I want to just hold them and tell them it's going to be alright.  I think about those parents and want to take it all away.  It's so... odd.  I look back and remember going through the motions.  I remember people asking me how I was handling it... they couldn't imagine what I was going through.  At that time though, you just do it.   There's no choice.  I know I've said that before... but now we're at 9 months post surgery and wow, I am starting to not even be able to imagine how I did it.  My heart aches for that mother... that mother that watched her child just bleed.

Yet, I don't want to forget one single thing about my experience.  I just would rather not remember in third person.  I want to be able to remember it all in first person.  I want to remember the incredible faith I had during that time.  During the entire journey not once did I doubt God and his plan.  During the darkest times I knew God was carrying me through, I had no doubt that he was supporting me.  I have no idea why this happened to us and I still don't... but it was for a reason.  I may never know what that reason was but there is a plan and God is great.  Now that we're "normalizing" it's hard to keep that incredible faith up all the time.  It's definitely there.  God is steering my life but I notice that sometimes it's hard not to want to take over myself.  When we were in the hospital, I couldn't take over... I had to surrender all.  God had to carry me.  Now, not so easy.  I have to stop myself now and remind myself that things will work out.  Whether the house is clean or not... we will be ok.  God will bring us through this hectic time of having 3 young ones (now all mobile) and things will work out just fine.  We'll survive and be happy.  If only I could have that extreme faith from the hospital back to help me through these mundane things (laundry, dishes, messes).  What I experienced in the hospital was amazing.  I grieve for *those* parents but gosh, I also envy those parents.  God showed me how strong I really am and in the end... showed me how incredibly awesome He is!



  1. You wrote this so nicely and it is EXACTLY how I feel! We are now 6 weeks post-op from my daughter Mylah's full heart repair, and I seriously felt the same exact way you did. People asking me how I am, and at the time, just doing it, getting through it. As I was reading your post, tears were filling my eyes and my heart was full. Full of gratitude that we all don't have to do this alone, full of happiness for you and your sweet Trey, and full of sadness for those parents who loose their heart babies. I hope you will stay in touch with me, I have loved watching Trey grow and reading your blog! Heart Hugs from Nevada!

    Lara H.
    Heart Mom to Mylah

  2. I love this post friend, and I feel so similarly. Thanks for sharing!