Saturday, July 5, 2008

(Stormy) July is ours to enjoy!

Can I tell you how good it feels to have the sedated echo behind us? It went well. Really well. The most difficult part of the entire day was that I couldn't feed Luna for several hours before the procedure. This is because she needed an empty stomach so she could tolerate the hydrochloride. Pepere came along for the ride and kept Luna company in the back seat while I drove. She fussed out for maybe five minutes, but Pepere was able to calm her by coaxing her with a water-filled bottle. An aside: Luna won't take a bottle. Sienna wouldn't either and I promised myself I would work harder at it this time around, but here I am in the same situation again. ~sigh~ But this time it turned out for the best because unbeknownst to me, Luna wasn't allowed to have even water before the procedure. The other difficult part of the day was the oral sedative given to these babies tastes awful. I realized they weren't kidding when I changed her diaper later in the day and was accosted by a foul stench. Watching Luna struggle against two nurses as they squirted the rust colored liquid down her throat was painful. But from the time they administered the sedative to the time she conked out was about 4 minutes. So really, how bad is that?

The balloon cath worked better than even the doctors predicted. (Dr. Brown actually gave me the footage of her cath. I plan on posting it soon so you can enjoy watching the tiny balloon snake it's way up Luna's tiny veins, through her shunt and into her left pulmonary artery where it stops to inflate several times). Just to recap: Luna's left pulmonary artery had significantly narrowed, most likely from a snag that occurred when her shunt was installed at 3 days old. Luna has two cardiologists (how lucky is she that she not only has one brilliant doctor, but two!), and they both agreed that she would have to have the balloon cath procedure twice before the Glenn. But guess what, she fooled them! What happened is once the blood was able to move more freely though the artery, much like a river, it grew wider as the flow increased. I was fairly confident this was the case before last Tuesday's appointment because the sats I'm getting on her are often in the low 90's (!!). Indeed this was confirmed at her appointment where her sats averaged 87. The result of all this? This stormy July is ours to enjoy. Luna will go for a MRI and her Glenn in mid-August. Sure, you might think that's just around the corner, but one thing I've learned having a special heart baby is time is finite. And never has Buddhist-inspired phrase 'live in the moment' been so true.

It seems that every day there has been a dramatic thunder storm. Sienna talks about them in great hyperbole on a regular basis. Today, as we were driving back from the Farmer's Market the sky deepened several shades of gray. I noted aloud that another storm must be coming in. Sienna, from the back seat started a dialog that went like this:

The storm is coming. A storm is coming. Mommy the storm is coming. Mommy, do you see it. Mommy the storm is coming NOW. Mommy, do you hear it? I hear the storm coming. It's coming right NOW. The storm is coming I hear it on the roof and it is raining right NOW. Mommy, the storm is HERE NOW and it is raining on my head. Oh, it's raining on Elephant's head too. Mommy, the storm is a coming! Oh it's raining SO hard on my head!

The funny part about Sienna's diatribe is it wasn't raining. And you couldn't hear the thunder. As you looked down Route 1, you could see the sky had darkened, but that was it. She continued on in hushed tones that I couldn't quite decipher, but through the bits and pieces I could hear she was consoling her pink stuffed Elephant who was clearly concerned about the coming storm. By the time I pulled into the driveway the sky had opened up to full sun again, and Sienna, Luna and Elephant were fast asleep in the back seat.

Luna 4 months and chunky!
Luna in her crib weighing just about 13 lbs at 4 months and looking positively chubby! Check out those Michelin tire arms!

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