When we went for the anatomy scan at 17 weeks we found out we were having another baby boy. We also found out he has a Congenital Heart Disease (CHD) and his diagnoses was Hypoplastic Left Heart Syndrome (HLHS) and Restrictive Atrial Septum (ASD). To translate: the left side of his heart didn’t develop and the atrial (hole) that pushes blood from one side of the heart to the other and to his lungs was nonexistent. HOLY. We were consumed with fear and the unknown of what exactly was being said. It was like these people are talking to me and all I hear is the Charlie Brown teacher. I asked the doctors why!? How!? A Congenital Heart Disease, for lamest terms, is luck of the draw and 1 out of 100 babies have some type of CHD. They said it wasn’t anything we did, it just was. And now we face it head on. The word termination was immediately offered to us and we were not having it. GOD MADE US THIS BABY AND WE WILL FIGHT. So that shut them up about that and we started searching for a second opinion. Through friends and total strangers the name CHOP came up over and over. Children’s Hospital of Philadelphia. I researched and researched until my eyes were crossed and it always came back to CHOP.
At our first appointment with the Fetal Cardiac Team at CHOP they gave us the odds of our baby surviving, 1 in 4. One in Four. ONE IN FOUR. To get those statistics was debilitating. Ken and I rode home in silence from that appointment. THAT DIDN’T DEFEAT US. Yes we got home and licked our wounds but we got right back up. We prayed. We reached out for prayer. We reached out for answers. Our next visit was the opposite of the first. That same doctor who gave us the odds of 1 in 4 came in after my sonogram and said “So look, the hole that was nonexistent is there now. This could change a lot of things for when he is born but we need to monitor him closely through the rest of the pregnancy. And he will still need open heart surgery within the first few days or first week of life” YA’LL. The Dr. was smiling under that mask. The prayers we asked for, the people we don’t even know praying for our sweet boy, GOD DID THAT. And we know there is more to come because he is so faithful and if we ask for it we will receive it! In the name of Jesus!
So this is what we are asking for, PRAYERS and to come in agreement for our little warrior baby to keep growing and fighting and God to keep making that hole bigger to where it needs to be. We are also asking for help financially. We were told we need to “relocate” before he comes since this is a high risk pregnancy and since we don’t know when Julian David will need to arrive for best care. We know God will provide because he always does, and to all the people who have donated so far is just a testimony of that. I am almost 30 weeks and they want us to relocate close to 36 weeks. Obviously Ken is unable to relocate at that time with Nash and I and will have to drive back and forth on weekends. I also want to ask for prayers for my husband coming home to an empty house is not going to be easy whatsoever. Please also pray for our Nash, he doesn’t understand what is going on and it will be even harder on him when I’m in the hospital with Julian. And lastly, prayer for myself for following my gut and strength. We will get through this and we ask you guys to fight with us!
We appreciate anything you can give and prayer is most valuable.