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Entry 6: Faith

Posted by Sherri Viner on March 23, 2015 at 2:10 AM

After we found out the initial diagnosis and long term prognosis we slowly began to tell people. The question of terminating the pregnancy has not only been asked, but in many cases we felt like people just assumed we would. I wouldn't be honest if I said I hadn't at least thought about it. I thought about how much easier it would be on our family, after all we are raising two other boys. Not to mention that it may be more humane right? Why would anyone knowingly want to put their child through the pains of medical issues and hospital stays if they didn't have to. In the end, our decision is solely based on our faith and belief in God.

 

Faith is something many people proclaim to have but when it comes right down to it, it's much harder to live with it. I can't explain why some children get sick or why certain people die and others don't. What I do know is that there's a bigger purpose or reason that may not be immediately seen or understood. I have my human moments all the time and I still question God and ask why we were chosen to be Nicholas' parents. That's where our faith kicks back in and says to relinquish our doubts and trust in God for whatever comes. Even if our reality becomes that Jimmy and I have to outlive our son. We just want to love him as his mom and dad for as long as we can.

 

We continue to live with Faith, Hope, and Love.

 

Upcoming: Our next appointment is scheduled with the pediatric cardiologist on April 16th. We should get more information on the specific heart defects then.

 

Categories: March 2015

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2 Comments

Reply Sherri Viner
9:35 AM on April 9, 2015 
Thanks so much for leaving your comment Beth, it means a lot to us. Since we found out, we have been hearing stories of surviving Heterotaxy Heroes and it certainly gives us more hope!

beth says...
We didn't find out my grandson had complex congenital heart disease with heterotaxy til my daughter was 6 mos pregnant. First hospital missed it. They told her right there her baby would never survive outside the womb. He has 6 different heart defects and has had 2 open heart and several cath surgeries. He is 7 now and doing great and going to elementary school. He was projected to have the first surgery at birth. Labor was induced and they waited to airlift him to Cardinal Glennon in st. Louis. He was a little blue when born and we were surprised to take him home after 3 days of being checked out. He skipped the 1st surgery and had the 1st open heart at 8 mos old. He has had the fontan and be directional Glen shunt. He has almost 100 percent oxygen level after living with 70 percent til he was almost four when he had the last open heart. He is a living miricle. Doctors can't understand how he works with so many missing parts in his heart. Keep the faith. This are not always as they seem. He runs and plays and is super intelligent. His only restrictions are carnival rides, contact sports and too much jumping around as his blood circulates by gravity not the pumping of his heart. Email me if you have any questions at all.
Reply beth
8:43 AM on April 9, 2015 
We didn't find out my grandson had complex congenital heart disease with heterotaxy til my daughter was 6 mos pregnant. First hospital missed it. They told her right there her baby would never survive outside the womb. He has 6 different heart defects and has had 2 open heart and several cath surgeries. He is 7 now and doing great and going to elementary school. He was projected to have the first surgery at birth. Labor was induced and they waited to airlift him to Cardinal Glennon in st. Louis. He was a little blue when born and we were surprised to take him home after 3 days of being checked out. He skipped the 1st surgery and had the 1st open heart at 8 mos old. He has had the fontan and be directional Glen shunt. He has almost 100 percent oxygen level after living with 70 percent til he was almost four when he had the last open heart. He is a living miricle. Doctors can't understand how he works with so many missing parts in his heart. Keep the faith. This are not always as they seem. He runs and plays and is super intelligent. His only restrictions are carnival rides, contact sports and too much jumping around as his blood circulates by gravity not the pumping of his heart. Email me if you have any questions at all.