Wednesday, July 16, 2008

Doing great!

We saw the pediatric cardiologist today, Dr. Zittergruen. He rocks. He spent about 45 minutes in the room with us answering questions and explaining everything. He talked about his own experience with his children. He was so personable it was great. He gave us some GREAT news! After he reviewed the pictures of the echocardiogram from last Tuesday before we left and the pics from the ECG taken today, he said that Addie will more than likely not have to be on diuretics, she won't be getting shortness of breath, and he is not worried about congestive heart failure!!!!! Three things to praise God!! I think I was in shock. I thought these things were inevitable. They are not! He said her heart was looking good and that it has kind of taken a different path on how we will be treating her.

She has "Tetralogy of Fallot" which means she has four malformations that go together to make up her diagnosis. She has a 1. ventricular septal defect (VSD) which is the small hole between the right and left septums; 2. Overriding Aorta, which is where her aorta is slightly misplaced, but in Addie's case this overriding Aorta is helping her avoid the chance of congestive heart failure and diuretics because where the aorta is sitting is actually helping to block the hole in her heart and keeping the blood flow going where it should. The last two things, pulmonic stenosis and right ventricular hypertrophy will develop over time due to the above two things. Pulmonic stenosis is a narrowing of one of the outflow tracts, but again, in her case is actually helping to get the blood going to the right place. We will have to watch it as if it gets too narrow then it will actually reverse the flow of blood and then it would be pushing the oxygen rich blood through the hole in her heart, and if this happened we would just move the surgery date sooner. Right ventricular hypertrophy is when the right ventricle gets thicker due to it working harder and this can be fixed at surgery time.

Initially Dr. Zittergruen thought we'd be seeing him every other week and Dr. Fox on the other he said things look so good that we will follow up with him in two weeks and then if things still look as good as they did today then we will just see him once a month until the sugery. So praise God!

Right now we are planning on meeting with the surgeon in October and scheduling her surgery for mid December. She will be in the hospital at the Univ. of IA for 3-5 days and then usually takes another 5-7 days of recovery at home, with lots of TLC. Dr. Zittergruen forwarned me that the first couple of days following surgery can be pretty scary as she'll be hooked up to lots of wires and machines, similar to her first day in the NICU, but he said they remove them quickly as the anesthesia and morphine wears off..He said it is just good to be preparred when we see her and know what to expect.

Here are two links with better explanations than what I can write here......


Tomorrow is going to be a long day as we see the audiologist in the morning, followed by the developmental specialist, and then the occupational therapist in the afternoon. I was able to catch up on some sleep today so hopefully that will help us! Right now Addie is sound asleep on my chest as a write and I just love this! She hasn't eaten as well today, but Dr. Zittergruen said she might just have some days where she eats less, the main thing being that she makes up for it in the days following and that she continues to gain weight. Today she weighed 7 pounds 5 ounces and was 20 inches long! Again, thank you all so much for your prayers!

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