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Mark Roth
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Sleeping cuteness.

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Joey's doing a bit better today. His fever and heart rate are both back down to a more reasonable level, and he's a lot less cranky. (Yesterday on the way home, we decided that his full nickname is Mr. J. Wiggle-Worn Cranky-Pants Roth.) We had a good visit with him.

Joey's been doing a funny thing where he rolls his eyes back into his head while he sleeps. We call this the "possessed baby" look. I've attached a few amusing pictures of this.
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Our little boy in his momma's arms.

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Despite the shock of today's information, +Rachel Zara Roth​ managed to find some good bonding time with Joey.
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We talked with members of Joey's cardiology team today to find out more about where we're going from here. We're still trying to internalize everything they told us, but here are the important parts.

The good news is that Joey's continuing to do well as we wait for the duct between his pulmonary artery and his aorta to close. In fact, he's so strong that they apparently needed 3 people to hold him down yesterday for his echocardiogram!

The bad news is that his Ebstein's Anomaly is so severe that his right ventricle is essentially useless. There's nothing they can do to fix it, so instead they're going to have to essentially bypass the right side of his heart, leaving him with what they call a single-ventricle system.

This will be done via a series of 3 surgeries. The first surgery will happen as soon as they've confirmed whether or not there's a blockage in his aorta (which, if present, would be corrected during this surgery). This will involve increasing the size of the hole between his two atriums, sealing the bad valve between the right atrium and right ventricle, and adding a band on his pulmonary artery to decrease the blood flow to the lungs.

The second surgery will happen when he's 3-6 months old. This will involve detaching the superior vena cava (the main vein that sends blood from the head to the heart) from the right atrium and connecting it directly to the pulmonary artery, this bypassing the right side of the heart.

The third surgery will happen when he's reached 30 lbs, which could be somewhere from 3 to 5 years old. This will involve doing essentially the same thing as the previous surgery, but this time for the inferior vena cava (the main vein that sends blood from the lower half of the body to the heart).

The real kicker is that even after all of that, he still has a 50% chance of needing a heart transplant sometime later in life.

+Rachel Zara Roth​ and I are still reeling from all of this, but we greatly appreciate everyone's support.

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Here's the latest Joey update, for those that are interested. Apparently, babies are born with a duct between their aorta and their pulmonary arteries that closes naturally within a few days of birth. In Joey's case, this duct connects to the aorta in a spot that is very close to where they think his aorta may be blocked, which is making it hard to confirm whether or not the blockage is actually there. So they need to wait for the duct to close before making a final determination. They're taking new measurements every day, and the duct is definitely getting smaller, but they want to wait for it to close completely, so we're basically in a waiting game at this point. However, they do say that the fact that he's doing very well as the duct gets smaller is a good sign; it's a possible indicator that the blockage is either not there or is fairly small. So we're trying to stay hopeful.

In the interim, +Rachel Zara Roth​ was released from the hospital last night, and we went up to Stanford so that she could see Joey for the first time since Friday night. She's a natural mom -- Joey's not currently allowed to have as much breast milk as he wants, so he's been pretty unhappy, but he settled in pretty damn quickly in his mom's arms!

Thanks to everyone who has sent good wishes our way. We appreciate all the support!
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Joey update: More tests today, but no results yet. Hopefully we'll have more news tomorrow. The waiting is hard, but we're staying hopeful.

In the interim, here's the latest dose of cuteness. :)

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All Americans, both on the left and the right, should support this bill.  I encourage you to sign up to be a citizen co-sponsor!
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