Thursday, April 10, 2014

A mixed bag... Neurology and Cardiology

Yesterday we saw the neurologist. Zacchaio's neurological exam was completely normal, as was his EEG (which measures the electrical activity in the brain). As of right now it's safe to say he is a neurologically normal newborn! I know today's normal doesn't guarantee tomorrow's, but for now our baby's brain is developing as it should and that's reason to celebrate. 
Slept right through his EEG!  

Today we saw the cardiologist out of UCSF, Dr. Tanel. A great man and an even better doctor. I appreciated the way in which he treated Aidan and me as equals, and acknowledged and celebrated the miracle that Zacchaio is.

After reviewing Zacchaio's EKG, Dr. Tanel was happy with his heart rate control and feeling hopeful about there being normal sinus rhythm intermittently peppered within his irregular rhythm. Though Zacchaio has been cardiac monitor-free for a few days now, he got a new Holter monitor today which allows the doctor to see continuous cardiac activity for the next 24 hours. This will give him a better idea of the ratio of normal rhythm to arrhythmia, as opposed to the limited alarm functionality of the previous monitor.

He also had an echocardiogram to evaluate whether his arrhythmia has inspired any remodeling of his heart, and thankfully it has not. Structurally, his heart looks fantastic and his arrhythmia has not affected its function in the least.

What they DID see on the echocardiogram was pulmonary hypertension, higher than normal pressures in his lungs, which they anticipated would have resolved by now. We're awaiting recommendations from the pulmonary hypertension specialist. They also noted higher than normal velocities in his aortic arch due to the congenital stenosis (narrowing) that's present there. Fast-forward a bit, if the narrowing doesn't grow proportionately with Zacchaio, they'll likely do a cardiac catheterization and inflate a balloon in his aorta in an effort to manually widen the narrowing. Luckily he continues to show NO signs of inadequate perfusion or difficulty breathing, so we embrace today, feeling blessed that he has resilient lungs and a tenacious heart.

Genetics appointment next week and a dermatology appointment the week after. Praying for good news, praying for an ability to find peace amidst unanticipated news.
With every passing day that our boy appears "normal" (aside from his skin, heart, and eye), Aidan and I find ourselves more convinced that his long-term outcome will also be "normal." It is days like these that ground us again. We continue to wake up every morning doing our best to balance our optimism.

All in all, I just can't get enough of this little peanut! 

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