Lia's Story

After 16 years of marriage and a five-year old son through adoption (Nathaniel, our gift of God), Danielle and I were shocked to learn of her pregnancy last June. Following a challenging pregnancy, Eliana Grace was born on January 24, 2018. Eliana (Lia) is the answer to many prayers, the meaning of her name (my God has answered).

Our family has had many challenges since Lia's birth in January, Danielle's gallstone development during pregnancy with gallbladder removal in March, two GI scopes related to the gallbladder removal, another infection requiring treatment, and Nathaniel seemingly picking up every classroom bug this winter (influenza b, stomach bugs x 2, etc.). After all this, we had hoped "normal life” as a family of four would finally set in this week...

On Monday we had what was expected to be a routine pediatric cardiology appointment for Eliana. One of the pregnancy ultrasounds showed a possible minor atrial-septal defect (hole between the top chambers of the heart). That ultrasound was to follow up on images obtained before Lia was born. The findings were not as expected.

The atrial-septal defect (ASD) may still be present, but is small and the least of the doctor’s concerns. Two other findings are more significant. Eliana also has a small ventricular-septal defect (VSD), or hole between the two bottom chambers of the heart (the chambers that eject blood into the body). Additionally, Lia has a coarctation of the aorta (CoA), a narrowing of the great vessel that blood exits the heart through and into the body. Lia is a happy and growing baby- we had no idea anything was wrong internally. The doctor did hear a heart murmur, blood pressure differences in the upper and lower extremities, and weaker than normal femoral (groin) pulses.

The pediatric cardiologist is sending the ultrasound images to a pediatric cardiothoracic surgeon at Lurie Children’s Hospital in Chicago for review and determination of next steps. We should hear back early next week.  Lia will most likely require surgery within the next six weeks to fix the condition(s). The extent of the surgery is still to be determined, “open chest” surgery if they only fix the coarctation of the aorta, and full open heart surgery if they also need to repair the VSD. 

We are trusting the Lord for our baby girl's health, His provisions, and the strength to endure this process. He has always been faithful and trustworthy, and always will be- in both good times and difficult times.

This blog will be our primary means to communicate updates about Lia's progress. If you want to be kept up to date, subscribe to this blog through email or a RSS reader. If reading on a mobile device, you may need to switch to desktop view to subscribe via email. This blog will often be updated "on the fly," meaning that I/we will not be doing rewrites or much editing before posting. So expect typos, extra words, and "unpolished" entries.

Please keep Lia, Nathaniel, and us in your prayers. 

Jeff and Danielle