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 incredible...my 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.

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.

Wading through the insurance muck.

Just a quick note to say I have spent over 2 hours on the phone today; all in effort to essentially figure out how to PAY for our very beloved, and very expensive child.

Next week Luna will receive her third synergis shot. Wanna guess how much the co-pay is? $25 you say? try $2500.00!! Actually $2511.98 to be exact. The best part is after 2 hours of back and forth, trying to get on a payment plan, but then realizing I needed to get off the phone with the pharmacy, and have them get on the phone with the insurance company because the payment plan HAS to start with them (Anthem in our case); we realized the pharmacy who doles out the shot had the wrong insurance information!

So, back to the drawing board... next up, calling Early Support and Services to get someone out here to evaluate the medical marvel also known as Luna.

Stay tuned for more insurance fun next time...

The New Lu

Mothers and fathers who have kids older than 12 months will understand completely what I'm about to describe. It's a finite moment when suddenly, your once innocent and immobile baby, now seems to have batteries. Batteries that are completely charged and running at full power. Gone are the days when you buzz around the kitchen while your baby sits quietly with a basket full of toys. Everything in the house is a liability; the cat, the bunny...and nothing goes unnoticed from the emerging toddler-monster toddling the halls.

This is where we are with Luna. The cuddly, kissy, baby, who not to long ago would cling to me for dear life, now lunges from my arms in the direction of the floor, each time I pick her up.
However, this child is still not crawling. So, you're wondering how is she moving all around? Well, as the old saying goes, "where there's a will, there's a way". And Luna has certainly found hers. She scoots on her bum, from one end of the room to the next. (eventually I'll figure out how to post a video, so you may actually witness this for yourself), but for now, you'll just have to trust me. The funny thing about her scoot, is she doesn't use her arms. She sort of bounces on her bum from one end of the house to the other. It's truly hilarious.

Did I mention she's nothing like Sienna?

Sienna is cautious. And has been since she was a baby. She always talks about her Grandmother, and perhaps it's because she feels a connection to her: neither will walk on ice, and neither are particularly daring (at least physically). She's approaching three years old, and still she insists in clinging to my hip every time we venture out into the abnormally-cold-even-for-New Hampshire-climale.

Well, Luna, she is just the opposite. The most dangerous corners of the house are what fascinates her most. The heat register, "perfect! let me scoot over and try to put my fingers on the tiny blades behind the vent!"
An antique candle stand that is strong enough to hold a single stick..."Sure! let me try to pull myself up on this!" You can almost see the thoughts registering in her young mind.

The most fun are the places Luna goes that I can't get to. Case in point: yesterday I was blow drying my hair while she was playing on the rug in her room just across the hall. Her room is pretty-well child proofed...or so I thought...
With the shrill whistle of the hair dryer, I couldn't hear what was going on-but again, I had some big wooden puzzles on the floor and a few soft balls, so I thought I was safe for five minutes. I look over one minute and see Lu playing. Then I look over the next, and she is GONE. I thought she had managed to scoot under her crib (she has a penchant for getting trapped under large furniture..)
Then I noticed the bottom drawer of her armoire was opened. What I saw next was two chubby legs flailing from within.
Yes, Luna had opened a drawer and managed to topple inside.
No harm done. Though I wish I had grabbed a photo of this spectacle, but leaving her with her legs flailing seemed cruel, so I plucked tiny sweaters off her body and pulled her out.

But the fun didn't end there.

I plopped Luna back onto her new pretty rug (with flowers and dots, purple and pink that perfectly match her curtains, crib set and lamp shade) and this time tossed down a few toys that really aren't her toys like Candy Land; thinking that an un-toy would keep her interested. I got back to grooming, which is a luxury these days, and something I hadn't enjoyed in far too long.
Over the buzz of the dryer, I heard a slam. I looked across the hall to see Luna had shut the door.
From the yelps and chirps coming from the other side of the door, I could gather Luna was both pleased with herself but also a little annoyed that she couldn't get the door back open.
This was all great fun, until I realized I couldn't open the door more than a crack to get to her-because she was sitting not one inch away from the solid pine panel.
Each time I would crack the door an inch, Luna would try to push it shut. Squealing with delight each time. After several minutes of this exchange, where I have to admit I was a bit panicked thinking the pre-toddler monster would defeat me, I finally had to reach in and gently push her to the floor so I could sort of roll her away from the large swinging door.
Naturally Luna was furious the game was over and erupted in tears.

Later that night while sitting on the couch, I told Paul-who also happens to be an architect-of the incident. He simply responded with, "that's why in public restrooms, handicapped stalls always swing out".

Luna's 10-month-but supposed to be 9-month appointment.

Due to one of the million snow storms we've had this winter (ugh, still some 13 weeks or so to go!), we missed Luna's nine month appointment. This morning, just 3 days away from her 10 month birthday we made it in to see Dr. Goodnews.

Coincidentally, we were instructed to go to the same examining room where, not quite two weeks ago, Luna endured her second in a series of six synergist shots. As soon as we entered the tiny, outdated examining room Luna broke out into a full howl. Though it was hard to hear my own thoughts amidst all this vocal protesting (and Sienna's muffled whining from below me), I had to admit...I was rather impressed she remembered the place.

I tried my best to quiet the poor thing. Sienna pushed her face into Luna's, offering her a rotation of silly expressions, which normally would have settled the baby. But Luna is onto this doctor business and she would not have any of it. She kicked and thrashed to the point that I had to restrain her (did I mention this girl packs a punch, and has quite the little temper to boot? Dr. Goodnews, actually said, in response to her thrashing about, "Girl you don't quit do you!") I finally had to thrust a bottle into her near-toothless mouth so Dr. Goodnews could hear what was going on. All and all she sounded great. She has a slight murmur-which are rated on a scale from 1 to 6. Luna is a 1. So nothing to worry about there. (in case you're wondering, many, many of us have a heart murmur, myself included. Really all it means is you can hear the blood flow. And in some cases you can hear changes in the blood flow because of some type of obstruction or in the case of Luna, a malformation of the organ itself).

Dr. Goodnews also heard a 'clicking' noise. Maybe it's the sheer exhuastion, but the word 'clicking' almost made me laugh out loud. I asked what this 'clicking' meant, and Dr. Goodnews, in his usual Goodnews-y kind of way, just said, "oh it's nothing, just her Glenn". I wasn't sure how her Glenn operation could result in a clicking noise, but didn't press, nor could I press, due to the aforementioned yowling.

Otherwise, Luna looked great. Her ear drums are a bit pink, but she has a tiny cold, much like the rest of the world's kids right now (well, at least in our hemisphere). And she is growing very nicely...she's 26 inches tall and weighs in at 18.7 lb (with a diaper). That puts her right in the 25-30% percentile for growth which is where she's been all along.

The entire examination was over in about 5 minutes, though I felt as though I had just run about 4 miles-at top speed. I packed the girls into the car and took them to daycare and wished I could have been the one sleeping in the backseat.