Monday, June 16, 2014

Five Years Later


It seems like a lifetime ago, yet I can recall each and every detail so vividly and clearly.

We weren't expecting it. We certainly didn't ask for it. We never dreamed it would become our reality.

And yet, there we were. We found ourselves in a Perinatologist's office and were awaiting the official results of the high-risk ultrasound we just completed on our unborn baby boy -- our first son -- our sweet Chase.

There are no words to express how it feels to hear the child you are carrying inside you has a heart defect that is fatal without a series of invasive treatments beginning immediately following his birth.

There are no words to express how it feels to have the joy and expectation of your child's healthy future so suddenly ripped from your heart.

There are no words to express how it feels to fear leaving the hospital with empty arms and a broken heart rather than with your new bundle of joy.

There are no words to express how it feels to become a "Heart Mom." But that's exactly what I became that day. And now, exactly five years later, I wouldn't trade a moment of it for the world! Of course I wish my son had been born healthy, but God---in His infinite wisdom---knew that we were the perfect parents for Chase, and we have been blessed beyond measure to see Him working right in front of our eyes! Chase is every bit a living, breathing miracle of the love and blessings of God and I could not be more thankful to be on this journey as his mommy.

But I often think of how our world was turned upside-down that fateful Tuesday morning. I can easily recall those unimaginable emotions I had never before felt in my lifetime. I remember what it felt like to be told my unborn son was not healthy and learn how his future was very much in jeopardy.
On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."

To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. G, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.

The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.

We left the ultrasound room and waited for the perinatologist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.

The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.

The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.

As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.

We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.

So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. H. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. H did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.

While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.

I have never allowed myself to imagine the future and have always taken things one day at a time -- living in the moment as best as I could. I was afraid to believe we would have our boy with us for even 5 days, much less 5 months or 5 years! Or that he would be living and thriving and truly enjoying his life, with just half a heart? It was beyond fathomable.

But as I look back and reflect on the past 5 years, I see that I've learned something incredibly valuable:

 God gives us exactly what we need, right when we need it. 

I never could have made it through the last half of my pregnancy with Chase without God giving me the peace I needed to make it through.

I never could have delivered my son and watch him be whisked away, waiting over two hours to hold him for the first time.

I never could have sat by his bedside for 6 days, patiently waiting for my second opportunity to hold my newborn baby---the night before his first open-heart surgery at 7 days old.

I never could have watched as my tiny baby rolled down the hallway to the OR -- not once, or twice, but a total of SEVEN times so far---three of which were to repair his tiny heart.

I never could have made it through the past five years without God providing me with exactly what I needed, right when I needed it.

His grace. His peace. His love. His mercy. His healing. His faithfulness.

We are so blessed! This boy is absolutely amazing and I praise the Lord for allowing me the privilege of being his mommy!



  1. What a journey! We praise the Lord for you and Chase!

  2. What a journey! We praise the Lord for you and Chase!