Hemangioma

So I have been holding off blogging about this. This is at the fore front of my mind and I haven't been able to blog anything else because I am consumed.

Ava was born with a "strawberry birthmark" behind her left ear and kinda in front of her ear. I am not that worried or that vain to care about the strawberry mark. Ah, she'll have hair to cover it was my thought. Well over the course of the next couple weeks the strawberry became more raised. And then about 2 weeks ago I noticed that the area underneath her earlobe was begging to get swell. We had an appt on the 5th of this month with her pediatrician.

Confirmed what we already knew that it was and infantile hemangioma. It can grow for up to 18 months and there is very little that we can do about that. I was not satisfied with the answers that she was telling us, she referred us to an pediatric oncologist/hematologist. We saw her this last Tuesday. We know that it isn't cancer, that was never a concern, we just wanted a second opinion and someone to hear our concerns.

She assured us that our concerns were valid. Don is worried about it growing into the bone or something serious. I am worried about her being disfigured, that the hemangioma will not stop growing or will not shrink.

The hemangioma grows for anywhere between birth to 18 months and then it starts to go away slowly and perhaps completely by 3 to 5. So needless to say since no one can tell us how long it will grow and when or if it will go away and assure us that its growth won't interfere with her ear canals and facial nerves etc etc....argh...I probably wouldn't be ok with anything that they told us.

Anyway the new doctor that we saw it, did some measurements which it is currently 4 centimeters by 4 centimeters, and thinks it is advisable for us to get it further investigated. She has referred us to Dr. Ilona Frieden, she is at UCSF and has literally written the book on vascular anomalies and is a nationally renowned Dr. in this field. Her resume is quite extensive and I feel so honored and grateful and lucky that she is the Dr. who we get to see. I am almost star struck by her experience. We get to go to San Fransisco November 30th, which is the Friday after Thanksgiving to see her.

I am hopeful that she will agree to begin treating it, it is already quite large and is growing still, and for only being 6 weeks old, I hope they agree to begin treating it, again something that is normally not done unless the benefits out way the risks of an infant using steroids.

By the way...steroids not really what this chunk needs. On Tuesday she weighed 10lbs 7 oz and was 22 1/2 inches long! She gained 1 lb and grew 1/2 inch in a week! Holy Cow!! She is a giant!

Ha ha, anyway - I just have visions of my perfect little baby girl growing up to look like "Mask" not the one with Jim Carey, the one with Cher or Sloth from "Goonies".

Any way your prayers and warm wishes would be helpful and aappreciated!

From these pictures you really can't get a good feel for the size.

This is more of a ramble then a blog, my apologies.