What would life be like without the tension produced by uncertainty? I will be the first to admit that the uncertainty and anxiety of the words “heart defect” feels uncomfortable and painful to say the very least and particularly when it is the case of the baby growing inside you. It seemed that up until that memorable ultrasound  our lives were going  just as planned. My husband and I (healthy and in our  20's) felt so very blessed to be expecting again !! Our son was 18months old and full of spunk. Our  household was full of laughter and praise. Nearing 20 weeks of pregnancy my only fear was to not have enough room for our new addition. Where to squeeze in another baby bed was probably this biggest decision we had to face until the moment that jolted our reality and started our family’s journey of the heart.

Ruby was still as the jelly was squeeze on my belly and the wand danced over her. The conversation with the technician about baby names and shower registry came to an immediate halt as her face dropped. She said, "I need to step out for a  minute and let the Dr. talk to you and your husband."

The doctor that delivered our son came in and explained. "It is a girl, but there is a problem with her heart. It appears that she has a very rare defect known as Hypoplastic Left Heart Syndrome." My own heart broke in the darkness of that moment. He drew a picture that basically explained how the  left side of her heart did not develop. There were many other doctor words coming out of his mouth, but all I heard was pain and disappointment. He made us an appointment with a high risk doctor and sent us home. I spent the next few days searching for answers on the internet. What I read only left me more upset. The words that stood out to me were: open heart surgery... no cure... extremely rare.... heart attack /stroke risk... sudden death.... experimental stage. .. limited life. Although I am a faithful believer in the Lord, I felt the depth and darkness of emotional and spiritual depression overtake me. My husband remained unshaken as usual and prayed for better results at our next ultrasound.

The next visit only confirmed our fears and worse, that she had no nasal bone and that abnormalities of the fingers and toes possibly indicating that Ruby might haver little hope of survival. Tension and uncertainty were all that we had left until an amniocentesis showed that she was negative for trisomy18 and other genetic syndromes. That glimmer of hope was a comfort. Knowing that she did have a good chance of survival was a blessing in the midst of our storm.  My husband and I had been very outspoken about our commitment to carry her regardless of her diagnosis. We knew that she is God's creation as well as our child and we wanted to give her every chance possible. Now that we could stop planning a potential funeral and start planning for a course of treatment, we were given our three choices.  HLHS babies are born with  a failing heart. Doctors usually offer these three options; heart transplant, three reconstructive surgeries, or "compassionate care".

Compassionate care is the choice to not treat and to let the baby die at home with drugs to keep her comfortable. Babies with hearts like Ruby's can only live a few days or weeks without surgery. We chose the three surgeries option. We heard that some babies pass away while waiting for a heart transplant, so we prepared for immediate action with the surgeries.

The second half my pregnancy was spent in hope and prayer. Knowing what Ruby would face for a lifetime was hard to accept in the beginning. I wondered how we would afford to take care of her financially and emotionally. Would it be hard for us to love her to the fullest, knowing that we could lose her? How would her special needs affect our son Samson? These were only some of the hard questions that we prayed over.

God heard our prayers and soon sent supernatural blessings to us  just at the right times. We won a "Dream Nursery Makeover" Sponsored by Similac and Ty Pennington!! Wow. We took that as the first sign that she was coming home. Our small town of Gray, Georgia prayed for her safe entrance into the world and for the strength of my family.

On January 21st, 2009 she made her way into our lives. My labor was induced and her helicopter transport was on the way as Jason and I kissed her "goodbye for now". The next day we made our way to Atlanta to visit her in the intensive care. She was so beautiful. I saw her heavenly, peaceful face past the tubes and wires and whispered the promises of a better tomorrow and for her just to be strong. The question as to whether or not we would hold back our LOVE for her had been answered... She had our hearts from the first moment!!

The next morning she endured her first 9 hour reconstructive open heart surgery at only 4 pounds. After a few weeks of recovery in the hospital we were sent home to let her heal in peace. Ruby, Samson and I stayed with my grandparents while her Dream Nursery was under construction. Looking forward to the "grand reveal" kept us smiling through many sleepless nights. This tiny baby was an around the clock job. I can say to this day that every moment has been worth it. On March 7th we moved into her tranquil new nursery. What a blessing.

The weeks that followed were a roller coaster. Ruby experienced complications with the tiny 4mm shunt that kept her alive. Multiple trips back and forth to the emergency room, tearful ambulances rides to Atlanta, two life saving catheterizations and shunt revisions later.... and it was time for surgery number two.

This one was even scarier that the first because of the urgency. Ruby was still under the ideal weight, but something had to be done. Signing the papers for this operation was unbelievably difficult. Maybe because we knew her and loved  her more everyday or maybe because we felt so helpless, but again God heard our prayers for calm and comfort. Ruby fell asleep the night before her surgery after I bathed her in the hospital bed. I noticed that she had nodded off with her hand making the "I LOVE YOU SIGN" with her fingers. We took that as another heavenly sign that everything would be okay.

After her operation, recovery was speedier and easier than expected. Ruby came home a different baby. Her cheeks were pinker, her breathing was less labored and her smile was bigger than ever. I enjoyed the day that her feeding tube, oxygen tanks and pulse ox were picked up by the medical equipment truck. We have been able to put those things away for now and have enjoyed so much this past year of LIVING!!

Tension and anxiety still remain in the back of our minds. Knowing logically that there is no way to fix her still hurts me as her mother, but the absolute JOY of watching her enjoy and  grow everyday far overpowers all of the worry. I have all faith that God will take care of her tomorrow’s as he has taken care of her yesterday’s and will bless her sweet heart for all of eternity.

I cannot imagine how cursed we would have felt knowing that we had shorted  her precious life with a decision to terminate, or even by choosing the "no treatment" option. There is only a small window of time for parents like us who face this very agonizing decision. I pray everyday that expectant parents will give their special baby a chance to fight. I believe that the strength these children show and the desire they have for living their days to the fullest can create a belief in the Creator like never before. The Holy Spirit has given me a hope for our baby. Even if her life is not as long as others, she will know the love we have for her.

As she grows we realize that we will face scary times again. Another reconstructive surgery is in the near future and a transplant will one day be necessary to lengthen her life. Even though her special heart was not in our perfect plan, I wouldn't have changed a day that I have spent with her as her Proud Mama. She is without a doubt enjoying a WHOLEHEARTED LIFE.