Good Evening

So, Ruth and I have had a bit of a trying week. Sweet little Evening born back on the 8th of September was a sweet dream from the moment she was born. On the second day of our brief stay in the hospital a nurse picked up on a heart murmur which wasn't considered a big deal. We brought her home nervously (because she was a sweet tiny being not because of the murmur) and she was great. At her first pediatric visit a few days later they confirmed the murmur and referred us to a pediatric cardiologist in Elmira. That appointment was set for last Friday - her two week birthday.

We suspected it would be a routine visit because she was great at home - looking good and keeping us on our toes. After an Echocardiogram, an EKG, a saturation test and a few others the doctor informed us that Evening had a serious condition. He described the condition known as Tetralogy of Fallot. About 8 in every 1,000 newborns have a congenital heart problem and of those a small percentage have this particular problem. This condition is comprised of 4 particular issues according to the American Heart Association:

1) The first major one is a ventricular septal defect. This is a large hole between the two ventricles that lets venous blood pass from right ventricle to the left one. FRom there it goes to the aorta and on to the body without passing throuhg the lungs to be refreshed with oxygen.

2) The second major component is a stenosis at or beneth the pulmonary valve. The narrowing partly blocks the flow of venous blood into the lungs. This is the most intense issue for sweet Evening.

3) The third component is that the right ventricle is mor muscular than normal; and

4) The fourth component is that the aorta lies directly over the ventrical septal defect as explained in the first component.

Symptoms such as blueness can result due to that fact that the body isn't filled with enough oxygen.

After this was diagnosed she was admitted to Arnot Ogden hospital in Elmira in the Neonatal Intensive CareUnit for observation. She did fairly well there and on Monday we brought her to the Strong Children's Hospital in Rochester for more detailed follow up. We now wait for the team of cardiologists to determine when and how many surgeries she will need. Likely they will occur in the upcoming months.

You wouldn't know she had such an ailment from looking at her - she is gorgeous as ever and resting well.

We plan on using this blog to keep folks around the country abreast of the sweet lady's condition. I'll also likely use this is a platform to rant about my frustrations and also my sincere appreciation for all the support and prayers coming in. Please keep them coming. We love you and thank you all.