Sat-tastic

Yesterday Luna and I ventured into Boston for her day of pre-cath/pre-Fontan labs. The day was long, the traffic crummy, the weather crummier.

But the doctors, nurses and other specialists at the hospital always make it right. This time, just as we were leaving, a woman came rushing into the waiting room. In her arms, boxed toys were piled high above her chin. Luna managed to grab a Little People Pirate set just as we were leaving.

Luna had X-Rays, blood work, EKG, weight, height, vitals and blood oxygen saturation's, AKA sats, taken. So far, everything looks fine.

But mysteriously her sats are up. WAY up. Luna, very gingerly and sweetly offered up her index finger so the cardiac assistant could fasten a tiny sensor on her appendage. Luna held her hand perfectly steady, and immediately the blood saturation meter took it's read. A steady '94' glared on the machine. There are people out there, who have zero heart issues who might read that. The most anyone can read is 100.

The 'sats', probably more than any other vital, is what keeps us heart parents on our toes. Dropping sats and in for a cath our kids go. High sats, and in for a cath they go.


The catheter fellow I spoke with thought that perhaps she had a venous collateral. Collateral are like streams. The body, in Luna's case, with it's tricked-out circulatory system, gets hungry for oxygen. The result is tributaries shoot off the main veins, and shoot up to the lungs, or sometimes down into other organs, in effort to give the body more oxygen. But really it's not effective, and if we let all these collaterals jump ship off their main rivers, the entire body and all it's organs would not be supported.

I asked the cath fellow a hypothetical question: if Luna's sats are high enough, why even move forward with the Fontan? He explained that the body would be fine with partial circulatory; as is Luna is now, but after say 10 years of this, one would run the risk of stroke, or maybe even death. One main reason, that her lower circulatory system skips her kidneys, which is a natural filter for things like small clots. Blood clots, even those that can only been seen under a microscope, can still cause a lot of grief. Stroke probably being the biggest risk.

Come Tuesday we'll find out if any rebel branches have shot off the main rivers to find recluse on other parts of Luna's body. Luna is 'first case', which means we only have to starve her till 7:30 am-at which time, baring-and fingers crossed-no emergency case bumps her out for a later slot-she'll be given the 'happy juice' before she is brought back for the 3-4 hour procedure. If the doctors find any pesky collaterals, they'll be given a good blast of heat-where upon they will recoil into their submission, bringing Luna's circulatory system back to it's pre-Fontan normalcy.

I Do It!

“I do it!”

"I DO IT!!”

It’s what comes out of Luna’s mouth, oh at least 99 times a day.

The entire dynamic of our house has shifted. It’s damage control; all day, every day. Even Sienna, our four-year-old is part of the clean-up crew.

In a matter of just a few weeks, Luna has crossed over into the Terrible Two category. With two capital “T’s”.

Inside I’m actually relieved. Relieved because the terrible two’s are all about autonomy; and Luna, through her tantrums, is demonstrating some serious intent. At barely three-feet-high, she cannot negotiate the world like her parents and older sister. And this makes her angry. Fuming mad. And frustrated, and finally sad. The most mundane of house hold tasks-like turning on the TV-usually ends with Luna in a puddle of tears on the floor.

From the moment Luna wakes-up, until I man-handle her into her crib at night, every task at hand is I do it. (Yes I wrote man-handle. Luna is an expert climber, shaming the deftest of any monkey out there. But she hasn’t been able to figure out how to climb into her crib; an event that requires me to wrestle her in, against her will)

Height seems to be a thing for Miss Luna. She desires to experience life from the highest perch she can find. Usually in the morning, this is my antique dresser that is over 4 feet tall, where, in a short visit to the bathroom, I will find Luna sitting proudly on top. In the case of this morning, I found her eating a bowl of cereal with a mischievous grin. (honestly, I’m not sure how she got the bowl up there-in tact-with no spillage).

So, my new worry is how this very spirited, rebellious, strong-willed little girl is going to take to being bed-ridden for a few weeks.

Can we suggest a steady dose of sedatives?

I worry too, because this child gets even ANGRIER if one curtails her efforts to “do it” herself. Last night she wanted to show Daddy how she ‘pees’ on the potty. The Architect isn’t clued-in yet on how to handle this. Luna MUST sit on the big potty, and only has me hold her because she’s already fallen into the basin (that was a good start to the morning). Well, The Architect tried to convince her that the little potty is for her. Her retaliation was to bite him with all her might.

Tomorrow starts our journey through Luna’s cardiac catheter and Fontan. We’ll arrive to Children’s Boston at 7:30 for a day of pre-testing. I’m hoping Luna’s desire to charm others will be stronger than her will to do things all by her big-girl-self. We’ll have X-Rays, blood tests and EKGs to get through. All of which require our New Two to sit still.

You can bet that I'll be holding my breath. My planned mantra for the day, borrowed from Luna, “I (can) do it!”

Luna turns two!

Luna surprises herself by successfully blowing out her candles.


On March 11th at 5:23pm, Luna turned two-years old. Luna shares her birthday with Rupert Murdoch (that just makes me laugh...Murdoch, the owner of Fox Network, is naturally considered the most evil figure among Progressives-the irony that our little Lu shares his birthday is not lost).

But some other interesting people share her birthday too. Like the guy who wrote the Hitchhiker's Guide to the Galaxy series, along with Ezra Jack Keats; author and illustrator one of my favorite children's books; A Snowy Day; the first children's book with an urban setting. It's interesting to note that all three of these March 11th personalities are connected the world of publishing.

Luna and I spent her special day together, shopping and doing lunch-alone-while Sienna played at school. In the morning we had her two-year wellness appointment. Dr. Goodnews did the usual ears, mouth, heart routine. Everything looked great. It had been a while since anyone had listened to Luna's heart, so I was holding my breath. While the pediatrician was listening to her, in his smiling-casual-everything-is-rosy-kind-of-way, told me he heard a 'click' in Luna's chest. I'm fairly used to clicks and clanks, and other strange noises doctors glean from pressing a stethoscope against Luna's tiny chest. When I asked Luna's cardiologist later what this meant she responded saying, "rather than a tricuspid valve, Luna's has a bicuspid valve, and the click is a result of that anomaly and means nothing more than if she was a blonde, or redhead or brunette." (For a good, simple set of drawings showing the difference between a tricuspid valve, or normal aortic valve, and a bicuspid valve , click here.)

Luna still walks with a young toddler 'toddle', so we wanted to have the doctor check that out as well. Actually, a better description of Luna's gait would be 'waddle'; which like most things, is adorable at two, and becomes not-so-adorable fairly quickly; like by the age of three. Dr. Goodnews had Luna waddle down the hall and assessed immediately that her toddle-waddle is nothing more than a result of her being a late walker (18 months).

Finally, Luna was measured and weighed. She tips the scale at 25 lbs exactly, measuring 33 1/2 inches tall. She's in the 25 percentile for both, which is just perfect for Lu, and where she's been all along. (Nothing wrong with being petite I say!)

Our appointment ended with an assessment of Luna's verbal skills. Dr. Goodnews asked me how Luna's speech was doing. I explained to him that she's not as verbose as her sister was at this age (seriously thank God, I'm not sure I could handle two kids talking on the level as Sienna).

Dr. Goodnews grilled me on the "does she say this?" series of questions, so I offered the doctor the following dialog that had recently occurred between the girls:

Luna: "Nanu WORK in RESTAURANT!"

Sienna: "Noooooo Looooona, you're too small!"

Luna: "Nanu can work in RESTAURANT!"

Sienna: "Nooooo Loooona, they won't let you! You're too little".

(continue dialog for 20 minutes until both girls spill over into shrieks and cries.)

Dr. Goodnews seemed pleased with this exchange, and just nodded his head and said, "She's right on track."