This is just the beginning

 I was 15 weeks pregnant when I started having chest pain and wheezing that wasn't relieved by my inhailer.  I was having upper back pain as well. I thought it was my asthma or pneumonia. Finally Josh said it was time to go to the ER. So we went and they diagnosed me with blood clots in my lungs. They put me on injections for the rest of my pregnancy and had me follow up with a hematologist. while I was there they also did a ultrasound just to make sure everything was ok.  Three or four days later I had a appt with my OB. She said that the ultrasound showed that the babys' stomach was up higher than it should be. She said not to worry too much because it could of just been the angle of the picture.  So she refered me to a perinatologist. So I went for a ultrasound and they said that the stomach was definately displaced but I wasn't far enough along to confirm CDH. At this point I didn't know exactly what they were looking for. The ultrasound tech asked me if I knew what they were trying to confirm and i said no. He said we are looking to see if your baby has a diaphragmatic hernia. I has to ask him what that was. he said it is when the diaphragm fails to form all the way allowing organs to move into the chest cavity.  I asked him if it was repairable and he said yes with surgery after the baby is born. Since they weren't able to confim it that day we left the office and immediately started researching what a diaphragmatic hernia was.  I realized very quickly that this is very serious. As I read those words "rare birth defect", "life-threatening", "50% of babies don't survive", "babies must be put on a ventilator and tube fed", "1 in 10 babies have another birth defect", "1 in 5 babies have a heart defect" my eyes filled up with tears to the point where I could't even see.  Of course Josh was telling me not to panic yet because we didn't even know if the baby had this or not. I think Josh was in denial because we both have healthy families and we have two healthy kids.  But me, I knew something was wrong. I knew that it had to be CDH. My gut was telling me that it was CDH. We spent the next four LONG weeks waiting for my next appt so we could find out what was going on. I remember the day like it was yesterday. A day I will never forget. It was January 31st 2012. Two days after my birthday. They started the ultrasound and found the stomach and part of the bowel in the chest cavity. They could barely see any diaphragm at all. They saw that the kidneys were underdeveloped and the stomach was pushing the heart to the right side of the body.  They took measurements of everything. Then the Dr. pulled me and my mom into his office to discuss the pictures. He told us that the baby does have CDH but we have options. Either we can continue the pregancy and do nothing or we could terminate the pregancy. I went home that day and I had to discuss with Josh our "options." We decided to put it into Gods hands and contine the pregancy.  Next we had a aminiocentesis and a fetal echo. Those both came back with good results.  Next on our list was to meet with the pediatric surgeon. Basically she just explained what CDH was in very good detail (which  most of it we already knew) and how they were going to repair the hernia. She explained ECMO and what they consider the baby to be "stable" enough for surgery. She told us about the different ventilators and explained some post op stuff.  We started having monthly ultrasounds and they all showed no changes up until the last one I had about 3 weeks ago. That one showed that the bowel had come down and one of the kidneys looked really well but the other one was still lagging. Now we will see the perinatalogist every two weeks for a ultrasound and when I am close to full term he wants to check the fetal lung growth before he decides when he wants me to go in for a c-section. I know that this story is not even close to being over. Now we play the waiting game for the next couple of months for our baby to be born. As for now all we can do is pray for miracle. Pray for our baby to be one of the lucky ones.