Surgical Dates Yet to be Set

Evening will be having at least one surgery in the approaching months, though dates have yet to be set. The team of cariologists and surgeons did not discuss her case yesterday - rather decided to discuss it next Thursday. I'm partially pleased that she isn't rushed in for emergency surgery, but also disappointed that we can't set a date to ramp up toward.

Evening is sweet as can be - just up to the typical moving and grooving of being a newborn (from what I've been told is typical). She's up a lot and has some stomach discomfort not thought to be associated with her condition. She's currently resting beautifully on her Mother's chest.

We plan on heading back to Ithaca tomorrow morning and hang there until we hear more information. Evening has requested that we wait at her Grandmother's house until after she see's College Gameday to make sure the crew picks the Ducks to hansomely handle Arizona State in tomorrow afternoon's game. I'll be sure to post some more photos of the sweet lady when we return to Ithaca.

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.

Welcome!

Weblog dedicated to the Special Heart of Evening Rian Doyle.


Evening Rian Doyle was born on September 8, 2006 to proud parents Scott and Ruth.
She arrived at 9:37 pm, weighed 7 lbs. 3 oz., and was 20.5 inches long.


Evening spent some time at Arnot-Ogden hospital in Elmira this weekend and was subsequently referred to Strong Medical Center in Rochester after being diagnosed with a heart condition. Scott updated us on Evening's condition today:

Just wanted to provide you a brief update on where we are at with Evening's condition. Her appointment at Strong yesterday confirmed that she has the congenital heart condition - tetralogy of Fallot. It is a condition where she basically has 4 current problems with her heart. The Strong Children's Hospital in Rochester's cardiology team is determining based on her anatomy when she should have surgery and how many surgeries she needs. They usually do one major bypass surgery to correct all the conditions at about 4 months of age, though in her case she may need two - one prior to the fix to install a shunt to help increase oxygen levels. The group will meet either this Thursday or next to determine when she needs surgery.

The trick now is to help her gain weight for her surgery and make sure she doesn't turn extremely blue. She is acting terrific and looks great right now.

Evening, Ruth and Scott are resting with family in Rochester, and expect to return to Ithaca next week. Scott and Ruth would like all of you to know how thankful they are for your support throughout the past weeks.