We found out we were pregnant with baby number two summer of 2017, thrilled for this newest addition we were on cloud nine and couldn’t believe how much more this little one was already adding in our lives.  Expectations of a typical, uneventful, but beautiful life was shattered in a matter of minutes.  Our son was diagnosed with a Congenital Heart Defect.  Our son was 1 in 100.  Our son would be born only having half of a heart, a formal diagnosis of Hypoplastic Left Heart Syndrome; another statistic being 2-3 out of 10,000 live births, it is that rare.

Anthony and I spent the following 18 weeks of my pregnancy preparing and educating ourselves on what was to come in our son’s life; it was terrifying.  From the moment we received our diagnosis, our Pediatric Cardiologist painted us a grim picture.  He informed us that he was due to receive three open heart surgeries before the age of three.  These surgeries would buy us time until he entered into his teenage years, where he would need a heart transplant and from there he had about ten years to live with a transplant.  Ultimately, we proceeded on in our pregnancy knowing that at some point in Andrew’s life, we would be doing a parents worst nightmare and have to bury our child.  We were going to live Andrew’s life in fear, not knowing what challenges he would face or if the present day we were living in was going to be his last.  We lifted our broken, fearful hearts to the Lord, knowing that he would be the guiding hand to get through each day of our new life.

Andrew was born March 20’th 2018, probably the easiest delivery one could ever have; I seriously would have twenty more kids if I could guarantee an easy delivery like his (HaHa). Before his birth, we were informed of the dozens of people who would be crowded in our room in preparations to treat Andrew immediately; as long as he could tolerate it, I could and did have a natural birth.  The medical team didn’t know if he would be breathing once he was born and informed us that he would be taken from us and rushed to the NICU immediately after.  The most beautiful sound we heard was his sweet cry and all I could remember was how determined I was to get a good look at my imperfectly, perfect son before he was whisked away.  To my surprise, the doctors allowed Anthony and I to each hold him momentarily before he was transported to the next room.

After I was able to finally see him, my heart broke and sank for the image I saw when I stared at my baby boy for the second time in his life.  An innocent little child who had wires up the ying-yang (ignorance is bliss and this was nothing in comparison to how he looked at Children’s Los Angeles).  He had monitor stickers all over his chest, to track his blood pressure, heart rate, oxygen level, and etc.  He had an I.V. line somewhere on his limbs which delivered the life saving medicine to his body; more specifically keeping a hole in his heart open so he could get enough oxygen to his body before surgery number 1.  We spent four and a half days at Kaiser Sunsets NICU/hospital and in that time we began learning all that was to come in our son’s journey and had the opportunity to hold and snuggle our precious boy.  The nurses there even allowed me to do some skin to skin which was both wonderful and terrifying at the same time.  Andrew was placed on my upper chest/shoulder and the kept scooting down and bunching up into a little ball; I was so afraid to move him even a centimeter, fearing I would rip something off.  Saturday, March 24, was a good day because after a week of not seeing Noah, I had both of my boys under the same roof; we also received news that Andrew would be transferring to Children’s Hospital Los Angeles (CHLA), less than a quarter mile from Kaiser Sunset.  The intensity between Kaisers nurses and doctors, the ambulance transport team, and CHLA’s nurses and doctors was mesmerizing.  They moved and spoke fluently and effortless as they safely prepared him for transport.  At CHLA, we had our own room which was swarmed by a handful of people who transferred him to new machines, assessed him to their own standards, and nestled him into his own bed.

 

Andrew then received his first open heart surgery Monday, March 26’th at six days old.  We were hopeful and giddy with our new life.  We were going through the motions unaware of what the following weeks would consist of; we had hoped and prayed that his case would be straight forward and we would have a life with our son.  He made it out of surgery just fine, but the following day (Tuesday, March 27’th) his heart stopped beating, which signified the beginning that led to the end.  His monitors were alarming and his nurse’s demeanor had changed as she swiftly worked on Andrew, called his doctor, and remained calm as they fought for his life.  Unaware of what was initially going on, I got up to look at his monitor and saw everything was flat lined; I sat down trying not to panic and stayed out of the way; Andrew’s doctor quickly came in, they called ‘code blue’ and I was instructed to leave the room as the whole floor rushed in.  After what seemed like forever, his doctor finally came in and told us what occurred and that they were able to get him on life support (ECMO), allowing his heart to rest.

The following weeks of his life was a constant battle and fight.  He had good days and bad days.  He fought fevers and a mysterious infection which elevated his white blood cell count.  He went into the O.R. a total of four or five times.  We were told that if he didn’t start making steps toward recovery, we’d have to talk about what we would do next (removing from medication and allowing natural progression) and we cheered as he defied the odds and made those strides forward.  At about one month old we were informed of how sick he was and how his heart had too many problems; the doctors and surgeons did everything they could but his heart was too sick.  We ultimately had to make the biggest decision of our lives and removed him from all medical intervention.

 

 

Anthony and I informed our family and friends that Andrew would be removed from his ventilator, allowing his body and God to fight as long as it could.  We watched our family and friends trickle in and out of Andrew’s room crying and saying their good-byes.  We hugged, cried, and said our good-byes to the medical team who became family.  We held and loved our son in the final days of his life.  We watched our son take his final breaths and then walked away from him forever

 

One year changed my life forever.  One boy and one diagnosis changed my life forever.  My heart is broken and I’m in a battle to keep breathing every day but through my faith in God, I know my life has a purpose and Andrew will change the world.  Our story was originally shared on our Facebook group: Heart Beats by Faith and will continue on here, as I navigate through this new life.  I named Andrew’s page Heart Beats by Faith because I knew that the only way we could navigate through his life is if we kept our eyes on the Lord and held onto our faith and trust in Him.  Little did I know this journey would rather be about me, my life, and my recovery.