An update on our daughter

Today our daughter is one month old. The first month of her life has brought on lots of medical testing, specialists and consultations due to the birthmark on her face. We're hearing mostly good reports sprinkled with some concerns. We saw a pediatric cardiologist on Monday and her heart looks good. He detected an "innocent murmur", but isn't concerned at all. We visited the pediatric dermatologist who was able to go ahead and put her on a new, very aggressive medication to begin shrinking the hemangiomas (which are also internal throughout her body, not just on her face). We also visited the pediatric ophthalmologist on Tuesday who is pleased with her progress on the new medicaiton. We are already seeing the swelling in her eye decreasing. She's opening her eye much wider for much longer periods of time. Since we know the external hemangiomas are decreasing in size, we know the internal ones are getting smaller as well. We visited with a pediatric neurologist on Wednesday who helped us understand the details from the MRI/MRA that were completed last week. There are some concerns with her left carotid artery being "curvey". They want to do some additional testing to determine if this is a "normal-curvey", or if we are at risk for an aneurysm. The neurologist is consulting with a neurosurgical team who will recommend our next test (probably either a CAT scan or angiogram). We should hear more by the middle of next week. On top of all of that, we think that the steroid has caused her to develop thrush.


It's been a LONG first month of her life, but I wouldn't trade the snuggles for anything! She's just so tiny and precious. She's beginning to hold up her head and make eye contact more and more. The boys don't really know about her's health complications because the doctor's appointments have all been while they're at school, which is a good thing. They would both be sick with worry if he had any idea what we've been facing. They are both so smitten with her!!!


Thanks again for your prayers and for taking good care of us! As we gain more answers to our many questions, I'm feeling a little better about being more open with everyone!