life as we know it....is different

On Tuesday morning, 6/25, I went in for a somewhat routine ultrasound. Specifically, a targeted ultrasound on Baby’s heart. This ultrasound was scheduled because the routine "mid-pregnancy ultrasound" I had on 6/7 did not provide my OB with enough visual detail on Baby’s heart. It was assumed that nothing was necessarily wrong. Doc just wanted extra visual evidence that Baby’s heart looks and functions like it should, just like every other part of her sweet little body. Yes, as most of you know, during the 6/7 ultrasound we were excited to find out we are having another girl! John, Abby and I proceeded to have a blast in Orlando the following week, enjoying the sun, sand and Disney after his conference, while Emily was thoroughly loved on, and somewhat spoiled by, John’s side of the family for the week. :) After a week of recovering from vacation, I went in on 6/25 for the targeted ultrasound as scheduled. I ended up going by myself as John had to stay home with the girls because Abby was pretty sick with what we think may have been food poisoning.

 

After an in-depth, targeted ultrasound on Baby’s heart, I left the hospital with the difficult news that our sweet baby girl has a rare, serious congenital heart defect. Specifically, she was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). To say the following 24 hours were difficult is putting it lightly. Though I have truly felt God preparing me for something this entire pregnancy, nothing could have fully prepared me to hear the news that our sweet babe has a serious heart defect. After the initial diagnosis, we were referred to the Congenital Heart Center at Children’s Hospital of Illinois in Peoria for a fetal echo. The fetal echo on Thursday, 6/27, confirmed the HLHS diagnosis.

 

In summary, HLHS is a rare disease affecting 1 in approximately 4,000 babies born each year. It is a condition in which the left ventricle, the one that pumps blood back out to the body, is severely underdeveloped. Babies diagnosed with this condition cannot survive after birth without immediate medical attention, including open heart surgery within a week after birth and two more planned heart surgeries within Baby’s first three years. If you’d like to know more about HLHS, check out this site. Or, if you want the full, detailed explanation of what HLHS is and what we’ll be facing if God chooses not to heal our sweet babe, check out this great series of videos.

 

Also, we'd love for you to join us on this journey through prayer and praise...

• Praise for Baby’s overall health - All indications are that, other than the HLHS, she is healthy. Praise God! Baby is "safe" in utero as long as she continues to develop and grow as she should and as long as I go full term, which I should.  
• Pray for healing - John and I completely believe God can heal our baby girl. However, we don’t know if He will choose to do so. We are praying and trusting for complete healing, and we’d love for you to join us in that prayer.
• Pray for our decision-making - Though we are trusting that God can heal her, we are also trying to be wise in planning for Baby’s critical care after birth if He chooses not to heal her. We have learned more about the function of a normal heart as well as an HLHS heart than we ever wanted to know. We recently received some answers regarding insurance coverage and are now in the process of researching children’s hospitals which provide care for HLHS. Please pray for clarity and unity for John and me as we talk/think/pray through all of this.

So, how are we doing? Remarkably well, honestly. As I said, the 24 hours following the news were quite difficult as we processed things together and separately. However, God’s grace and mercy are (once again) amazing. Praise Him! Ultimately, we know He has our baby girl in His hands, and there’s no better place for her to be. We know that He has allowed this trial in our lives for a reason (or more than one reason). We know that, upon hearing the news two weeks ago of Baby’s heart defect, our lives will never be the same, no matter what God chooses to do. And we know that God is already at work and is using this trial for good. Our number one desire in all of this is that we glorify Him as we step down this difficult road and that we draw closer to Him individually, as a couple and as a family.

 

Thank you so much for partnering with us in prayer and praise as we continue this journey!

"Be joyful in hope, patient in affliction and faithful in prayer." --Romans 12:12