On July 25, 2012, Tim and I went in for our exciting 20 week ultrasound.  I guessed we were having a boy.  Tim was positive we were having a girl.  We were thrilled that the time had come to find out!  Shortly after finding out we were having another boy and sending texts to family exclaiming our joy, we then were told the news, “Your baby’s heart is not normal.” What a turn of emotions from the texts we just sent to heart-wrenching concern!  Instead of going home and shouting the news we would be having another boy, we were home in tears as we tried to comprehend what this was going to mean for our baby and our family. 

Over the rest of the pregnancy, we had many doctor appointments with the regular OB, a perinatologist (basically an OB specializing in birth defects), and a fetal-pediatric cardiologist.  Our life was consumed with check-ups, fetal echocardiograms, non-stress tests, and preparing for possible surgeries.  Even with all these appointments, we still had no idea what to expect when this little guy came.  He might need surgery within a few days, he might not.  We might be in the hospital for weeks; we might be able to go home for a while. Needless to say, we also found ourselves mourning the loss of the “normal” baby experience, but that didn’t last long as we began to realize just how special our little one was.  We could already feel his amazing spirit before he was even born.   

Our lives changed once again only 3 days after Christmas with a regular pediatrician appointment.  His doctor noticed his breathing seemed much more labored and his heart did not seem to be functioning as well as he had hoped.  After a number of tests, we were back at Primary Children’s for what we thought was a short trip to fix medication doses and re-evaluate his feeding.  However, that turned out not to be the case. 

After another echocardiogram, the surgeon came to see us and told us Joshua’s pulmonary veins had started to narrow and immediate open heart surgery would need to be performed.  We were shocked and saddened as we realized our happy life at home was over for now.  We didn’t know it then, but we would never be home for more than a few days at a time again with our sweet Joshua.  On December 30, 2012, Joshua endured 10 hours of emergency surgery to put in a BT shunt, unifocalize his MAPCAs, and repair his total anomalous veinous return-just shy of his 1 month birthday.

 

Recovery was a long, difficult process.  Joshua spent the next three weeks in the Cardiac ICU at Primary Children’s Medical Center in Salt Lake City.  He was on constant medications for blood pressure, pain, anxiety, and to keep swelling down.  He had a breathing tube, chest tubes to help with the swelling around his heart, and a number of arterial lines for medication drips.  He had x-rays done continuously (every 4 hours at one point) and endured many breathing treatments.  He had a full time cardiac nurse with him 24/7—and they were very busy with his care.  There were two times he stopped breathing and had to be “bagged” to bring him back.  Twice they had to give him a medication to jump his heart back into a normal rhythm so it wouldn’t stop.  Once the breathing tube was out, he was on to the c-pap machines, high flow, and extra oxygen.  All in all, we were thrilled when the time came to move to the Children’s Surgical Unit and start our journey towards home.

We spent another week on the surgical unit working on feeding and getting medications tweaked for home.  We also had a blood sugar scare where his blood sugar dropped drastically without any explanation…and went away without explanation.  We were so excited to have the Nurse Practitioner and Cardiologists finally tell us we were ready for home. 

On January 28, 2013, we were able to go home...for a minute.  We had two days at home before we were back at Primary’s on January 30.  We went from the Surgical Unit, Cath lab, ICU, back to the Surgical Unit, back to the ICU, then finally back to the surgical unit again.  February 9, we were released from the hospital.  The following day, we took our first family pictures—little did we know it was going to be our last with Joshua.  Joshua passed away peacefully in his sleep on February 13, 2013. 

The journey was long, but Joshua’s spirit was so strong.  He made such a huge impact on the world in such a short amount of time.  We learned so much from him, including: living life to the fullest, enjoying the small moments in life, and being strong during adversity. We feel driven to help keep his powerful spirit alive and touch as many people we can with his amazing story.