My mom gave me the “You need to update Marshall’s blog more!” talk yesterday.

In my defense, I have a lot going on in my life with four wild ones, marriage, work, and life.

Throw in a baby too big to hold with just one arm, a couple of technical glitches, and going through a whole lot of “stuff” as we prepare for Round 2, and voila!

We don’t have hardly any time.

So, I will borrow some to keep things updated 🙂

I am happy to report that Marshall tipped the scale in at 14 pounds, 3 ounces Saturday morning during a weigh in on Raquette Lake.

That’s right, world, Michael & I introduced the little miracle to the icy waters of one of our favorite places on earth. And we got to
Get.
Away.
From.
It.
All.

No cell phones, no Internet, no anything but fresh Adirondack air, 8 miles of lake, our baby, ourselves, one big mouth bass, a quick call to home, and some locals.

It. Was. Incredible.

And a great way to refuel our strengths as we face the next Round of Surgery.

Marshall, all things considered, is doing thankfully very well. He is much bigger since the shunt was paced in Round 1 so his oxygen saturations are decreasing (just as his team in Boston said they would.) His gains have slowed A LOT (typical for “normal” four month old babies and again as Boston expected).

Also Marshall is a bit more fussy in warmer temperatures. He is happiest when it’s 70 humidity free degrees else he gets grumpy very, very quickly (kind of like his Dad…wink wink…;-) ) He is still a terrible sleeper by night though he tends to bank a good 4-5 hours at the start of the evening. And likes to sleep a good portion of the day away.

We haven’t started solids as we await his first little tooth or two.

And at this point we are just waiting to see what he does. As of now, the plan is to see Dr. Friedman on Monday, June 2. We will get a better idea of what is going on with Marshall’s heart after that. Then we’ll know if we will go forward with the “regularly scheduled” Round 2 Plan.

Round 2 will be July 18 with a week of preoperative testing before hand.

Let me remind you that though that is the plan, life with boys has taught me well and I live waiting for plans to change.

Plus per the conversation with Marshall’s nutritionist late last week, his gains (actually the lackthereof) mean “we need to expect to go back sooner for Round 2” direct quote.

Especially if he loses weight and his oxygen level goes much lower.

Here’s some information regarding all of the pallative surgeries Marshall will have (or has had) just pick the “Treatment” tab on Boston’s HLHS page (since there isn’t anything specific for Heterotaxy miracles like Marshall).

From what I understand, this surgery is more of a challenge for the miracle making (or is that superhuman?) skills of Dr. Baird and the Boston team. Essentially, they are taking a high pressure “pipe” (one of Marshall’s two Superior Vena Cavas) and plugging it into the low pressure “pipe” (Marshall’s pulmonary artery) to better stabilize the blood supply to his lungs. Not a simple feat by any means.

Hemodynamics are everything in hearts but more so in situations like Marshall’s because he only has one pumping ventricle. To ensure the best, the Boston team will study how his heart works in the days before surgery to replicate a similar but much more stable and improved circulation in Round 2.

Don’t ask me about the hows because knowing what I know is hard enough.

Toss in something about Marshall’s right atrium along with all of the piping system rerouting as well as addressing the Total Anomalous Pulmonary Venous Return and bingo! My understanding of Round 2 gets a little hazy.

Perhaps that is self protective.
Perhaps I just trust people with far greater knowledge.

Right now, and as it has been since his first surgery, is a tremendously unstable time for Marshall’s circulation. And we were so entirely, incredibly and remarkably lucky with Round 1 that I am not taking anything for granted still (or ever) when it comes to Marshall.

The fact of the matter is we just don’t know.

But I will let you know as soon as I find out…here’s to hope.