hemangiomas are stupid (part 2)

The ultrasound yesterday showed that the internal hemangioma had grown from 3.1cm to 4.7cm. I cringe at those numbers because of how small our little buddy is - 4cm could be his entire intestine for all I know! Hemangiomas are stupid, and I'm sick of them.

Once again, this does not mean that the treatment isn't working. It just means that the hemangioma is running its natural course, which is to grow, until the propranolol can kick it into gear and stop the growth. We need the propranolol to be at its full dosage to work its magic, but that takes time.

Something that can help expedite that process is steroids. After speaking with the world leader in internal hemangiomas (!!!) in Boston, our team at HDVCH has decided to do a 10 day course of steroids to help with inflammation and to help us get to the full dose of propranolol faster. Propranolol can lower blood pressure, so that's why you have to ease into the dosing. Steroids can raise blood pressure, so the idea is that they'll "even each other out" so that blood pressure isn't a hindrance to getting the full dose of propranolol on board. Hopefully that makes sense. I feel like I just typed 'propranolol' and 'full dose' about 473 times. Ivan is also on an antacid now to help calm his belly and ward off any GI issues.

The million dollar question when you have a babe in the NICU is, "Do you have an idea when he'll go home?" The short answer: no.

We have a plan, we have treatments, we have a team working around the clock to do what's best for Ivan, but we do not know how long it will take for everything to work the way it should to bring our boy to a point where he would be safe and comfortable at home. And my mama heart breaks with this unknown timeline and this distance between us. Believe me, when we have a discharge date I will shout it from the mountain tops. Or at least on Facebook. 

Thanks for your love, support, prayers. We know that our good God has ordained each one of these steps and knows exactly when Ivan will be at home with us and his brothers. He knows what's up, so it's ok that I don't.