An Update

Just realized it has been over a week since we posted anything. A brief update and answer to a few questions I have been receiving.

We are still waiting to hear back from the doctors at Lurie Children’s Hospital in Chicago via Lia’s pediatric cardiologist at Mercyhealth. When I (Jeff) spoke with her doctor last week, he plans to contact Lurie’s early this week. Once we hear back, we’ll have a better idea on treatment direction and timeline.

I want to emphasize that Eliana is not sick. She is a happy and growing baby girl. The coarctation of the aorta is a condition that requires correction through surgical or balloon intervention to prevent long term detrimental effects on the heart and body. There are two extremes for the coarctation in children. First, many cases present symptoms shortly after birth- altered cardiac/respiratory function with signs of heart failure. These cases are usually corrected surgically shortly after birth. Second, many cases do not present obvious signs and are not discovered until late childhood or adolescence. I believe Lia is closely reflects this side of the coarctation spectrum and don’t believe we would have learned about the condition until much later had it not been for the Lord’s providential working by having Lia even seen by a cardiologist at three months old as a “routine” follow up to a fetal echo cardiogram performed during Danielle’s pregnancy. More about that at another time.

Thanks again for everybody’s prayers and support. We could not imagine journeying this alone.

Additional Background Information

We launched this blog site and posted about Lia’s heart concerns less than twelve hours ago on Facebook. The support and prayer response we have received has been such a great encouragement. Since this blog site has been shared by a few of our family and friends, I want to provide additional context to why we launched this blog now and what we have learned so far about Lia’s heart concerns.

We decided to share our news now, before receiving a definitive diagnosis and treatment plan for a couple of reasons. First, our family, friends, and church family know what Danielle has been through since Christmas: gallstone formation, childbirth, readmission for postpartum blood pressure issues, gallbladder removal with two subsequent ERCP GI scopes, and a couple other things. With all of that behind us now, we do not want to give the appearance that everything is now fine and life can move forward calmly when asked by others (especially at church tomorrow). We could not just smile, nod, and lie when asked about our family’s health and assumptions made that everybody is happy and healthy now. Second, our parents needed the freedom to talk about Lia’s situation and process it with others. Third, we need your prayers! Fourth, the treatment for coarctation of the aorta appears to be standard.

Even though we still wait for the results and recommendations from Lurie’s review of Lia’s echocardiogram, Lia’s pediatric cardiologist in Rockford believes that the likelihood for surgery within the next 6-8 weeks is strong. Coarctation of the aorta increases blood pressures in the upper part of the body and lowers circulation in the lower half. While Lia’s signs are not as severe as many I have read about online, she did show signs of cardiac/vascular compromise during her appointment. Upper extremity blood pressures were approximately 30 mm Hg higher than in the legs (and elevated for a 3 month old) and femoral (groin) pulses were diminished. Long term effects of this stress on the body if left uncorrected can lead to severe consequences. Treatment recommendations/standards seem to be to fix quickly after diagnosis to prevent long term complications. Two routes of treatment exist: angioplasty to open the aorta or surgery. As I study the issue, surgery appears to be the definitive treatment to correct when detected in infancy. Perhaps we are wrong and minimal treatment will be required (or delayed). If so, this will be a short-lived blog site :-). We will know more next week and will provide an update on the situation and plan.

We continue to trust in the Lord through all this. 

Now may the Lord of peace himself give you peace at all times in every way. The Lord be with you all. 

2 Thessalonians 3:16

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