NEW Bundle Gift Sets of Loveys + Crinkles Available For Sale!!

tag-along

Enjoying the simple things in life

Laurie Cepkauskas

Ah summer time! Sweet sweet summer time! At least that’s what it used to be. Ya know, before heart disease entered the picture. I had a prenatal diagnosis of Emily's Down syndrome and heart defect (AV Canal). So when she was born on January 30th, 2016, we knew we had to protect her broken little heart from germs. We didn’t allow any visitors. NONE! Most of our relatives met Emily through Face Time (thank goodness for technology). We longed for the simplicity of Emily sitting on Papa's boat and “driving it.” and vowed that we would get there soon.

This summer...it finally happened!

At 3.5 months old, Emily under went her 1st open heart surgery. May 16th, 2016. The very next day she went into heart failure. She was on and off of life support 5 times before the decision was made to go back in and perform a 2nd, life saving, operation. That one took place on July 11, 2016. Emily was FINALLY discharged from an excruciating 95 day stay on August 18th, 2016! We were far from in the clear though. Emily was re-admitted simultaneously EVERY SINGLE MONTH for the next year for various reasons. Most of which was for respiratory distress.

That cycle became our lifestyle. We didn’t get to enjoy normal family activities. We were in a bubble. 




This past May, May 21st 2018, Emily underwent her 3rd open heart surgery to replace her left mitral valve. This surgery was a game changer in so many ways! Her body is finally growing and she’s developing more, meeting milestones on her own time. Along with her heart strengthening enough to fight off germs without a hospital admit every month! So to say that we enjoyed our summer would be an understatement. It has been so blissful to be together as a family of four and enjoy all the simple daily pleasures in life, along with some extra summer fun! 

Emily was finally home this summer. We really did not hold back at all!


This summer we went to festivals, Papa's lake house, witnessed first fireworks, attended family parties, visited museums, parks, carnivals. We took our first family of four vacation to Timber Ridge at Grand Geneva enjoying swimming, eating at restaurants and the local animal petting zoo. Emily and Tyler even stayed up late for story time and had their Forest Learning Lovey to show off and teach other kids about the animals!! (Use code EMILYSHEART for 25% off!) We knew that with Tyler going off to kindergarten that we had to make up for so much lost time and we sure did! Our weekends were packed with fun summer adventures all season and looking back at the photos I can cry at how long we waited for these moments. 

CHD didn’t take anything away from us. If anything, it just made us appreciate what we already have.

I hope that our Emily's Heart page on Facebook and Instagram gives you hope and for those who are yearning for days like we had this summer...I say: don't wait. Do YOU and make most of the moments you have with your loved ones, even if it is in the hospital.

Do not let a diagnosis define your limits because there should be no hesitation for happiness!



Older Post Newer Post


Leave a Comment