Wednesday, February 18, 2009

For your viewing pleasure.

It's been a while since I posted any photos of Luna. I've taken loads-though most end up on facebook-and not here. So, I thought while we wait for Luna's team to review her echo, we could actually have some fun. (I'll tell you, there have been a lot of lessons learned since giving birth to Luna. Perhaps the most important one is learning to live. in. the. moment. It probably helps that I'm fairly busy, okay insanely busy (!!) with my business, my family, book proposals (not mine-clients), insurance BS, um, facebook... that I have no time to really think about what the results are going to be. At the very least I'm too busy to worry-I only have time to keep my thoughts positive-and then the phone rings again, or a toddler cracks another demand on her mama.

It's hard to believe that Luna is turning one. (and Sienna three. The girls' birthdays are exactly two weeks apart-both are Pisces-and The Architect and I are both Cancers. A house full of water signs. We're swimming over here-or drowning, depending upon the day.

So here she is. Lu, Loon, The Loonster, Luna Bean, Sweetie, Lulu, all her chubby-cheeked glory.

The girls-for the most part-get along. Here Sienna displays good sharing skills (not always a regular sight).

Luna dubious of pool.

Luna-moved beyond dubious-is downright terrified of pool.

Luna-having too much fun with Pumpkin Pie baby food. This is a great food for heart babies who aren't that keen on eating. Pumpkin was recently touted as a superfood in the NY Times. This stuff tastes like, well, pumpkin pie. The kiddos think their having dessert, little do they know how good it is for them!

Playing Peak-a-boo with Mama.

Luna standing tall for Daddy at the Dover Chidren's Museum.

Woops, how did this get in here?! Sienna has a toy phone connected to her head all-the-time. Whether it's changing her dolly's diapers, playing at her kitchen, or sitting on the potty; a running dialog is always going on between she and the 'person' on the other end of the line.

Wednesday, February 11, 2009

The Forest for the Trees

Yesterday was the big sedated echo in Boston. The day for the most part was pleasantly routine. The drive in was a breeze. I got to sit in the back seat of our 4-Runner, wedged between two huge Brittax car seats. The purpose of me sitting back there was to keep lil' Lu awake. And, it worked! Paul chauffeured while Luna and I read, played peak-a-boo and sang The Wheels on the Bus (okay, I sang, Lu looked on and giggled).

Once we arrived to Children's things moved quickly. Luna was weighed (in metric-pediatrics is done in all metric-and I think she was 8.76 km-I probably have that totally wrong, and if any math nerd wants to translate that to lbs, please feel free!).

We then were ushed to the tiny sedation room where Luna was given the Chloral Hydrate. The medicine smells and tastes foul, but Luna sucked it all down and was almost immediately intoxicated. Seriously, I've said this before, but watching a drunk baby is truly cute. That might be considered unhealthy, but hey, it's great amusement for the otherwise un-amusing hospital experience.

A fire alarm went off just as Luna was succumbing to the sedation. Neither Paul or I budged. Which is scary-and rather titanic-like-we both simply thought it was a test. A few moments later a nurse busted in to say toast was on fire on the cafe and can we follow her NOW to the 6th floor where there was another echo room we could use. (we were on the 2nd floor and directly above the cafeteria-it should be noted that the Architect was dubious of the burnt toast story-he mumbled something about duct work and the HVAC system shutting down...)

Eventually Luna was settled into the dark room for her test. And Paul and I took the opportunity to grab lunch (not in the cafe).

After the echo, we all met back at the sedation room. Luna emerged from her sedated state good and loopy-and thirsty.

Finally, Dr. Brown, Luna's Boston card-came in to discuss what he saw in her echo. The first thing he said, was that her heart function and valves are looking great. He seemed amazed at just how great she looks-and states this often.

But then he quickly follow-up with a bomb (at least for me, Paul didn't seem so shocked), saying her left pulmonary valve has narrowed again. I wasn't expecting this, though as Paul reminded me, it could take more than one cath to keep it open. The other two wild cards the doctor delivered were: her aorta has a narrowing. This is COMPLETE news to me, and has me confused. I didn't know the aorta actually narrowed?! And the other bit of information is that she has some blood vessels that may have to be cauterized when she goes in for the cath. The blood vessels-or more accurately one vessel-could have formed when Luna's sats were a bit lower pre-Glenn. I *think* it's actually a good thing, and shows her resilience-as it's her body's way of accommodating her unusual anatomy.

All and all the doctor seemed pleased-if not downright surprised-at how well she does with her special anatomy. And I'm guessing since our conversation was not more than 90 seconds, that none of this is really any big deal. (I also should mention that during the echo Luna's sats were reading 93!!!! This is beyond own sats typically read 96-98!!).

So, where do we go from here? Well, Luna's team will review the echo (her team is her cath tech, heart surgeon, and Boston and NH cards) to decide how quickly she needs her cath.

Really, this is preventative stuff. Treatments that will keep her healthy and growing for years to come. Like I said, forest for the trees.

Sunday, February 8, 2009

Luna's 1 year (gasp!) sedated echo.

I thought I still had months before Luna turned one year old. I mean, everyone, including myself, still sees her as 4 months (my friend Sarah who lives in NJ asks me every time if she's sitting up yet. Um, yes Sarah, she's 11 months!!). And with life's happenings-both good and bad-smattering and battering us, I have not even blogged or told anyone that Luna goes in for her sedated echo cardiogram THIS TUESDAY(!!).

So, what does this mean? Well, for her entire 11 months of life I have been taking Luna to her NH card (Dr. Gauthier, who I love, love, love). The clinic is amazing, the nurses the best, and as you can tell by my affection for the cardiologist; I'm pretty pleased with her too. However, it's a smaller practice and they do not yet have the capabilities to perform a sedated echo. So, each time I've brought in Luna she's been awake, suffering and squirming through the entire hour long procedure. The plan all along has been when Luna approaches 1 yr old, she'll come into Boston for a sedated echo so the doctors may really get a good look at her. Basically it comes down to this: babies between the ages of one and just about two, won't lie down and have a probe pressed against them for an hour, so the doctor's have to knock them out.

The worst part of this procedure is having to starve the poor babies before the sedation. Luna cannot eat or drink beyond 4:30 Tuesday morning. What this means for Mama is I'll wake her at 3:45am to give her a bottle. Then the Architect and I get to make the hour and half ride into Boston for a 10am check-in. During the trip, I get to sit in the back seat and perform tricks so Luna stays awake. (the liquid sedation may not work if Luna has been sleeping for 2 hours prior). Luna will at that point be starved, so she may not be amused by my antics.

Since I've been through this before I know what to expect. The medicine tastes awful so I know Luna will object. However, last time I took her in she was not yet three months old, now she's nearly a year-and feisty. It's not going to be pretty.

Once Luna is knocked out Paul and I will wait while the echo is performed. The results are always immediate (like reading a fetal ultrasound).

So, think of us this coming Tuesday...prayers and general good vibes are kindly being accepted.