They found out 2 weeks ago , at their last sonogram before delivery, that their baby boy has Hypoplastic Left Heart Syndrome . They did not know up until then that he had this congenital heart defect.
Here is her blog post of the day they found out. (reading this is like going back in time for me, to when we were fighting for Mason's life....and how scary it is to know their heart is not complete)
Hunter and I had been told we were having a healthy baby boy. All of our test had come back negative and the body scan we had at 20 weeks came back normal. We were so excited to go to our last ultrasound November 12, 2012, to see how much our little man was weighing and determine when he could potentially make his debut. He was weighing in at a whooping 6 lbs. 15 oz., they were able to show us a 4D of our handsome little man. The nurse explained to us that Christian was not cooperating and she was not able to see the parts of the heart she needed to and that she was going to get her colleague that was a genius in getting the difficult heart pictures. Hunter and I became nervous when the other nurse came in and was very quiet during the whole time she was scanning Christian. She said she would go get the doctor and left. Our world came crashing down when the doctor came in with a genetics specialist. They explained that Christian's heart was not normal, but they were unsure of what exactly what was wrong and could only guess by what they were seeing. We were devastated. Why was this happening to us? What did I do to cause this? How did they miss it in the other ultrasounds? We just could not understand. They set up an appointment the next morning with a Pediatrics Cardiologist to do a fetal echocardiogram up in Wilmington, DE at a children's hospital, A. I. Dupont. Needless to say Hunter and I barely slept that night. I prayed the doctor's were wrong and that they had just misread my ultrasound and my baby boy was healthy.
The next morning our worst fears were confirmed. Our son in fact did have a Congenital Heart Defect, Hypoplastic Left Heart Syndrome. I was numb when the doctor was trying to explain to me what all this meant and what the next actions would be for Christian. I was stuck in this awful nightmare and I could not wake up. I had so much anger built up towards other women I felt did not deserve the healthy baby they had been given when I was left here with a baby with a broken heart and I had done everything right. The cardiothoratic surgeon that would be performing Christian's surgery met with us to introduce himself and reassure us. The rest of the day was kind of a blur of tears and emotions. Hunter and I did research and contacted other families that had been through the same thing. I was able to talk through email to a sweet Christian woman that has a daughter with Hypoplastic Right Heart Syndrome. Her story and faith helped me wake up today with a more positive attitude about our situation.
Hunter and I know that this is going to be a very long and hard road ahead for our family. We know it is going to challenge us as individuals, parents, and even as spouses. We know that through all this it will help us grow stronger in our marriage, as parents, and in our faith. We may not understand God's plan when giving us this "hiccup" in our life, but we trust it is for a greater purpose because we know His plan is perfect. We have a wonderful support system through our families, friends, and military family. We ask for prayer and encouragement through this. We know there are going to be rough days, but we also know that God is bigger than this problem and He will never leave us nor forsake us. We know He will be guiding the surgeon's hands on our little Superman's heart because he is the ultimate physician. Our son is going to be so special and be such a testimony to others.
Baby Christian will need open heart surgery very soon after birth, then 2 more before the age of 3. They have a long road ahead, but they know that God has chose them to be his parents for a reason ( though sometimes it doesnt seem fair) Ashly's and Hunter's faith will guide them, and they will see in the end , how truly blessed they are.
For updates on baby Christian
Please follow Ashly's blog http://hunterandashlyssupermanchristian.blogspot.com/