Dear Family and Friends,
As you all know, we are pregnant with a baby boy. He is due April 27, 2011. We have decided to create a blog to update you all on our baby boy's medical issues.
On November 17, we went in for our ultrasound at 17 weeks to find out the gender of the baby. On that day, we first learned of our son's health complications. Notably, the first thing that the ultrasound tech noticed was that his heart had formed outside of his body. This condition is called ectopia cordis. The other thing that the tech noticed was a cleft in his palate.
Since then, we have had two appointments with the fetal medicine specialists locally. They have discovered that our son's chest structure did not form properly. His ribs almost seem to stop halfway around his body. Additionally, the doctors suggested that we see a cardiology specialist to determine if there were any internal heart defects.
Most recently, we had a fetal echocardiogram performed at All Children's Hospital in St. Pete. The doctors found that our son has a congenital heart defect called hypoplastic left heart syndrome. In simplified terms, the left side of his heart did not develop properly. Right now, the heart is working sufficiently because as a fetus, the baby does not need to breathe on his own. In fact, his cardiovascular profile score is a 10 out of 10, which leads the doctors to believe that he will survive to full term. However, after he is born, he will have difficulty receiving oxygen without the left side of his heart.
If he survives labor, his prognosis after birth is poor. While none of the doctors have "point blank" told us that our son will die shortly after birth, these complications all together make surgery very difficult. This fact has kind of been the elephant in the room, not only with our doctors, but with everyone we talk to, since we have learned of his medical condition. While we obviously hope and pray for a miracle, we are not preparing to bring our son home.
But what does that mean for us now? We are enjoying the time that we have with our son now. God has already blessed us with 23 weeks together! We are thrilled to experience his movements and we look forward to seeing him play on the ultrasounds. We have named him Isaac Daniel. The name Isaac comes from the Bible, primarily the story of Abraham and Isaac. And, his middle name Daniel is after his daddy. In the story of Isaac, God asked Abraham to sacrifice his son Isaac on a mountain. Abraham trusted God and followed his instructions. Just before Abraham sacrificed Isaac, an angel intervened and Isaac's life was spared. We too are trusting God with the life of our son Isaac. In all of this, we pray that God's will be done. We do not understand the "why" of God's plan right now, but we can only trust that He is using us and Isaac to fulfill some part of His great plan.
In all of this, we also remain focused on the blessings that God has already provided us, some things that we may have lost sight of before. We have an amazing support system, including family and friends. We know that many prayers have been said on our behalf because of all of you. We both have jobs, our health, and each other. Katie has been blessed with a pretty easy pregnancy thus far without any other complications. Because of the sacrifice of one of his coworkers, Dan has also started working a Tuesday-Friday shift. He previously worked Wednesday-Saturday, so now we have two weekend days together! We have also both focused ourselves back towards God. We know that by trusting Him is the only way that we will get through all of this. We have faith and hope that we will be with Isaac again in heaven. And as much as we will miss him here on earth, our time with him in heaven will be far greater and longer than the time we will spend missing him here.
Thank you all for your love and support. Please continue to pray for us. It is going to be a long and hard journey.
