Hi everyone,
We got some startling news on Thursday. After hearing a new heart murmur approximately 2 weeks ago it was recommended we go to a cardiologist to get an Echo, just to make sure it is nothing. Well, that was not the case. We were shocked to learn, along with the cardiologist and pediatrician, that Eli has a congenital heart defect called Atrioventricular canal defect (aka AV canal). This is where there is a hole seperating the upper chambers of the heart (the atrium)and the lower chambers of the heart (the ventricles). Common holes are usually atrium to atrium (ASD) or ventricle to ventricle (VSD). This AV canal also include his valves. He has one large hole where there should be seperate mitral and tricuspid valves. Most babies are usually in heart failure by 3-4 months of age. Eli has a small amount of heart failure, his heart is slightly enlarged but nothing major. Nobody can believe he is as healthy as he is being almost 17 months old. Our only outward sign was his small size (0-5th percentile) and lack of eating which was attributed to our family's small size and pickiness. He has been small since birth so that was another reason we were not overly concerned about his weight. He was born at 5 pounds 15 ounces and is currently 20 pounds 2 ounces at 16 months old. His new murmur is attributed to some new failure of the valves due to the defect probably starting to take a toll. He will need open heart surgery to patch the holes and repair the large hole making in into 2 valves. At this time we are waiting to hear from the cardiothoracic surgeon. This surgery is not emergent but needs to be done sooner rather than later. He is at risk of going into full heart failure. He is a strong little guy as he has shown us thus far. He will make great strides after surgery. Keep Eli in your prayers!
I just wanted to take a second and say hello. I am a friend of Val's from high school. My husband and I live in Houston Texas with our 9 children. I also have a heart baby.
ReplyDeleteHer condition was not discovered until she was 6 years old. It was a shock and then the wait until surgery was hard. We really grew in our faith as we realized that our daughter belonged to Him. We were/are so blessed to know her much less have her as our child.
I have now met so many heart babies. Maybe I just never noticed before and now I pay attention. Anyway, these babies are so strong willed and tough. They all seam to have a "bring it on" attitude about life. These babies are the ones that have the personalities that run the world. They tell it like it is, they fight for what they know is right, and it the end they know what is really important in life.
None of us can know why God allows these things to happen but I know that my Morgan. I am still amazed when I think about how she has taught me to be a better person by watching her go through all the surgery and tests and stuff. I would never wish the struggle on anyone and yet I am so thankful that God trusted my family with one of His very very special heart babies.
Try to remember that you are not alone. Many of us are out here praying for you, your son, and all of the doctors and nurses that will help you. I added Eli to my homeschool groups prayer blog/list as well.
In prayer and so thankful for a chance to offer prayers. So many people helped us by prayers that it is so nice to find others to pray for. I remember having a hard time praying but "feeling" other people's prayers. I will get Morgan praying as well. God listens to childrens prayers especially the heart babies. They really have a special faith. I have seen it over and over again. Your Son is one of the special ones.
God Bless,
Shannon (Neen)
UA'87
Hey Sis.
ReplyDeleteI put Eli on MckMama's prayer list tonight. She has started a prayer list blog that is linked to My Charming Kids so if you start to see some traffic that is why!
She accepts prayer requests for the blog link each Wednesday.
Love you,
Val