Our Baby's Story- HLHS

     On November 29, 2012, we went to our OB for our routine 20 week ultrasound.  We were excited to see the little baby and had decided to wait until it was born to find out whether it was a boy or girl (although siblings were very disappointed in this!).  As the tech was looking at the baby and we were admiring the precious miracle, Zack and I noticed a white spot on its heart.  I pointed it out to her, and she blew it off as just an "echogenic focus".  (A brief background- Jake, our second child, was born with a Congenital Heart Defect called CoArctation of the Aorta.  We did not know this when he was born and were sent home with a healthy baby.  At 9 days old, he went into shock.  By the time his condition was determined, he was going toxic.  Two days later, he was stable and his heart was repaired.  He will always be a heart baby, closely followed by cardiologists.  He is blessed to live a normal lifestyle that most would never know about his repaired aorta unless they see his scar across his shoulder blade.)  The technician acted very odd throughout the ultrasound, saying how hot she was, and this and that... and even walked out of the room once.  After it was completed, we walked to the OB's office for the follow up.  She walked in, sat down, and asked, "Now, what did the technician explain to you."  We replied "nothing" and were immediately on edge, shocked, and not prepared for what was next.  She said that they found multiple factors that concern them, including a two vessel umbilical cord, cori plexus cysts in the brain, and a small left ventricle.  She said that these factors together are typically signs of a chromosomal disorder and in particular, trisomy 13 or 18.  She wanted us to be seen immediately by the high risk doctor.  We were absolutely blindsided and in sheer terror.  The high risk doctor did another ultrasound and an amniocentesis.  I was very concerned about having this procedure done (I'm terrified of needles, much less one into my belly!) as well as the potential risks to the baby.  Zack prayed over the baby and me and held my hand throughout.  Luckily little Bo was there with us, which made it hard at times, but was a huge blessing to me as a distraction during this.  We had to wait 1 1/2 weeks for the results which felt like forever; however, all chromosomal disorders came back as negative.  Dr. Graves, our high risk doctor, called to discuss these with me and said that she believes it to be heart related.  She scheduled us to see the cardiologist, Dr. Cavanaugh, at Vanderbilt Children's Hospital.  These days of waiting for our appointment were excruciating and truthfully, filled with tears.  We researched the internet to try to "prepare" ourselves for what we would find out.  God sent me multiple signs that I just need to wait on His timing and be patient.  Prayerfully, Christmas was quickly approaching, and four precious children singing about the upcoming birth of our Savior was the perfect distraction and needed focus!  Our appointment on December 19 confirmed that the baby has Hypoplastic Left Heart Syndrome (HLHS).  Dr. Cavanaugh was amazing and comforting.  She sat with us for hours, explaining and reexplaining what this meant, and the procedures that we will take to help the baby survive.  
     HLHS is when the left ventricle of the heart is extremely underdeveloped and can't pump blood on its own. In the fetal heart, while the baby is still in utero, there is a passage for the blood to flow through called a "ductus".  After birth, the ductus closes, which would leave a baby with HLHS without a means to pump blood to the body.  The best chance at life will be a series of three open heart surgeries called the Norwood Procedure.  Stage one is done right after birth, stage two is usually done around 4-6 months, and stage three is done around the age of 2.  
     We are counting down the weeks until baby #5's arrival.  In the meantime, I am scouring the internet, reading as much as I can find on HLHS, as well as trying to network to other parents that have gone through this.  God has already put into place so much that will get us through all of this, from just living in this amazing town and being as close as we are to Vanderbilt Children's Hospital, to the most perfect daily devotional I just started reading that is right on every day, to 4 precious children that provide such needed distractions.  Our family and friends have been amazing in becoming our prayer warriors as we begin this unexpected journey of our lives.  We ask that you please continue your prayers for the baby, the doctors, surgeons, and staff, our children, and Zack and me.