Thursday, December 22, 2011

The condition Little Baby Derrevere has is called Congenital Diaphragmatic Hernia. He has a hole on the left side of his diaphragm allowing just the stomach to protrude into the left side of his chest. He is otherwise perfectly normal on ultrasound. His heart and lungs have normal structure and function. How a baby will do after birth is sometimes unpredictable, but if they have good lung volumes and a normal heart they tend to do much better. The concern is that if there is not enough room in the chest for the lungs to grow CDH may cause the lungs to be small and the pulmonary arteries to have high blood pressure. Approximately 1:2500 children are born with CDH. It is just as frequent as spina bifida or cystic fibrosis. CDH happens during the 7th to 10th week of gestation. There is no known cause of CDH except for a 2% chance of having another child with CDH. There is an overwhelming amount of information out there an not all of it is reliable. I prefer the website below for those who are interested, however the pediatrician in me doesn't at all mind answering your questions!

CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

This is a cartoon showing basic anatomy.

Dear little angel,

This is our first letter to you and many more will come. Your dad and I found out that we were going to have you in August. Since that time we can't stop dreaming of the day we will finally meet you and see your face. You are scheduled to be born on May 10, 2012 (we'll see :) I am now 20 weeks pregnant with you and it is the week before Christmas. Up until last Friday we didn't even know whether you would be a little boy or girl. I am being extra careful to make sure I am very healthy during this pregnancy. My doctors want to watch me extra close to make sure that you are growing and developing normally.

I went in last Friday for an ultrasound to make sure that all of you tiny parts are there and to see whether you were a boy or girl. Needless to say we were very excited! Cindy did our ultrasound and was very very thorough! As you will find out that ultrasound didn't go quite as expected. When looking at your cute little face and watching your heart beat, Cindy noticed that your stomach wasn't quite where it should be. So she went to get Dr. Browne who is now mommy's doctor to take a closer look. He agreed and told us that when you were just a little peanut at 8-9 weeks a muscle in your belly called the diaphragm, which will help you breath and separate your stomach from your chest wasn't fully developed. He said it had a small to medium sized hole in it allowing your stomach to pooch up into your chest. This very much worried your mommy and daddy because if your stomach was in your chest, your lungs would have a hard time growing. I was also very worried about your heart! Your mom cried and cried because she didn't know what this meant for your health and whether you would be able to be happy, healthy and run around :) Your Grandma May even flew into South Carolina to be with us.

On Monday afternoon we met with Dr. Browne again to gather more information. Your dad, grandma, my friend Hailey and I all went together. We found out that the hole in your diaphragm was only a small hole and that your heart was healthy and normal. Dr. Browne also showed us on the ultrasound (that I will post later for everyone to see) that you will be a BOY! We were also told that you would have a rough road ahead of you immediately after you were born. Because your left lung will not have as much room to grow you will likely need help breathing right after you are born. You are definitely going to be in the neonatal intensive care unit at the hospital that mom and dad work. Hopefully you wont bless us with your presence early because we want to give you a long time to grow your lungs to be a big and healthy baby. We talked to all of the doctors that will likely be very involved in your care including the neonatal doctors and baby surgeons who I work with every day. They all talked about how they want to take extra good care of you and you may need to stay at the hospital for a while before you will be ready to go home. You will also need a surgery pretty soon after you are born to fix the hole. Hopefully after you recover from that surgery you will have more room and your lungs will continue to grow until you are a grownup. After that visit your dad and I were much more hopeful and I was soooo excited that I rushed out to all of the baby stores to find you a cute outfit.

We quickly packed up and rushed to Oklahoma to see Grandpa May and Grandma and Grandpa Derrevere (they haven't chosen names for you yet). During the trip back I started to try to think of the perfect name for you which I'm not even close to deciding yet. I am beyond excited and in love with you. Every time I am hungry you let me know by kicking. Your feet are so tiny but powerful. I talk to you all of the time! And your "brothers" Toby and Henry are always trying to snuggle my belly. I will let all of the people who love us read our letters to you because they care about us all so much. Hailey, Spencer and Lauren all brought us food when we were worried about you. Several of the amazing doctors that mommy works with called and prayed for us. We are now enjoying the Christmas holiday in Oklahoma!

We all love you so much and will be there to make sure you are strong and help you fight after you are born. You make us smile and light up our life and we haven't even met.