Sunday, July 27, 2008

A Day in the Life of Lu.

I thought it would be important to write about the regular hour-to-hour routine of Lu. Much to Mama's delight, she started sleeping through the night at 4 months. She typically wakes to eat around 5.30am. Luna has a sweet disposition and she is no different when she first wakes. Rather than crying loudly, she instead sort of grunts. I can hear her from our room sucking on her hand and cooing. When I enter her room I'm greeted by her smiling face looking up at me in the inky, predawn light. As soon as she sees me, she starts smiling, snorting and kicking her feet in excitement. I have never been a morning person, in fact, I could be the one counted on for waking last, but thinking of Luna's toothless grin is enough to pull me out of bed at dawn.

After I nurse her I put her back into her crib, where she sometimes sleeps till close till 9am. This gives me plenty of time to tend to Sienna, which typically means filling her sippy cup at least three times with soy milk, looking for her elephant and blankie at least 2 times, and serving 2 breakfasts (one early bowl of cereal and then a mid-morning waffle or english muffin served with lots of fruit) all while the voices of Elmo, Bert and Ernie chirp from the television.

When Luna wakes for the second time in the morning she is just as happy as she was the first time around. By this time Mama has had her fill on coffee and greets Luna just like this, "Gooooood morning LU!" Luna in return kicks her chubby legs and flaps her arms and smiles and coos. After a diaper change I give her .5 ccs of Lasix, which I suspect she no longer needs. She's on a tiny dose to begin with, and all her doctors have been on the fence whether she even needs it. One nurse at Children's told me if I see less and less wet diapers then that's my signal to take her off the diuretic. Just last night, it finally occurred to me, for the amount I nurse her, she really doesn't have soaked-wet diapers. When I gently pulled her out of her swing after a four hour snooze and changed her diaper, I discovered it was bone dry. I decided this was my cue that she doesn't need the med. I'll confirm this with her doctor this week.

Our days are hectic and busy, but fun and filled with the kind of stuff that makes for good childhood memories. Our big decision for the day is will we go to the pool or the beach? If we've decided beach, then we have another tough decision, which beach? If we have no appointments we make the trip to Marblehead where we meet Grandpa at Devereux Beach. Both days we've gone the temperature has soared into the 90's. One such day I cringed on the beach, imagining what Luna's cardiologist would say if I bumped into her (or him, she has two). But Luna slept or rested in the stroller under the canopy. I soaked one of Sienna's t-shirt in the ocean and draped her over her legs and Grandpa and I made sure she was cool and comfortable through out the day. Occasionally I would bring her down to the water to dip her leggies in the choppy salt spray. I was even able to jump into the ocean myself, while Grandpa stayed beach side with the girls. The waves were bigger than I ever remembered and I bobbed and dove into them just as I did as a teenager. The thrill of the immense wave rolling toward me and then the rush of surviving the gigantic roll is still the same, and still one of my favorite things.

Lu's evenings consist of feeding, napping, feeding, playing, feeding and watching Sienna's every move. Then she feeds yet again, fusses for a few and finally dozes off to sleep. Oh, and I give her 1/2 dose baby aspirin. She seems to be right on with her milestones. This past week she started rolling from her back to her belly-where she gets stuck and frustrated-which is exactly what Sienna did at her age. She babbles, smiles, stares intensely and deeply with her slate-blue marble-like eyes and more recently started laughing. Hers is more a guffaw than a giggle and is irresistibly cute.

So, there you have it...the day in the life. Next week we'll start solids. Mama can't keep up with this little chunker, who is has successfully doubled her birth weight, weighing in at exactly 14 lbs. August will bring it's challenges, but we've enjoyed our summertime and with an wink of an eye, humid, anxious August will give way to crisp, serene September.

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!