How has it been two years already?

Today marks the two year anniversary since Luna had her second open heart surgery: The Glenn. I have been thinking about this date all month, but I didn’t think that it would hit me the way it has. For instance, Luna’s birthday doesn’t conjure up any sentimental feelings, other than the normal, “I can’t believe my kid is going to be three this year.” And two days after her birthday, March 13th, which marks the date of her first surgery really does nothing for me either. I’m fairly certain when that date passed last year I was oblivious to its meaning.

But for some reason today, September 24th has been hanging on me like a heavy coat. The number ‘24’ will always stick in my head. When Luna’s surgeons were deciding when her second surgery would be, they chose the 24th-partly because Luna would be a full six months-a good place to be age-wise for the operation, and partly due to sheer logistics. My friend Sarah at the time said with complete conviction: “24 is my favorite number, everything is going to be OK.”

And she was right.



Hard to believe that was then, this is now. Her last surgery, the Fontan was end of May-right during Memorial Day weekend. I wonder if I’ll have the same feelings as I do today during next year’s unofficial passage into summer. The vague, contradictory, and all consuming thoughts of:

We’re blessed.
Why us?
That was really tough.
That was already so long ago.
What was I really feeling then?

For now, and very likely forever; open heart surgeries are a thing of Luna’s past. She is just like every other kid now. Regular check-ups, dental appointments, shots, and the occasional virus is what her life is about now. Luna is a spunky, tough, sweet, stubborn, and mischievous little two-and-a-half year old now. And really, who would want it any other way?


Last weekend Luna decides to take off her skirt, her shoes and her fairy wings so she can roll down a nearby hill. (Portsmouth, NH Fairy House Tour).

A Simple Thank You

Luna clutching her daddy on a recent camping trip in the White Mountains.

Now that the big stuff is behind us, it feels like a natural time to pause for a moment. My friend Mindi remarked in an email recently that we'll look back at this time "with amazement at the difficulties and the victories".

Indeed we will. Sometimes all of it seems like a movie. A very long movie, and one that held our attention captive for the past two years. Finally, the drama is over, and like walking out of a dark theater on a sunny day, the light is blinding. Our eyes are adjusting. Slowly the world around us is coming into focus.

I think for me, perhaps the most special memory, will be that of all the generosity poured our way. It was, and continues to be remarkable. Back in March, I wrote this blog post which illustrated the beginning of our journey through a fundraiser spearheaded by Marlow Rahn, a fellow Seacoast Mothers Association member. Like anything, it took just one person to reach out, and from there, others joined in. The fundraiser raised over $11,000. But the giving didn't stop there. Luna's school waived June tuition for our heart warrior, even though she miraculously only missed the first two weeks. (and honestly, she could have gone back after the first week, the only concern was that one of her classmates would knock her down, and subsequently bruise her healing chest).

Outside of the fundraiser, family, friends and complete strangers shared zoo passes, baseball tickets and cooked and delivered home cooked meals to our door. And of course, not looking over perhaps the biggest gift one can give, that being time. And loads of the precious commodity was put aside to help Luna.

To all of you, we thank you.


Love,
Paul, Sabrina, Sienna & Luna

Summer Fun (without getting a chest scar wet)

Yesterday was my favorite type of day; hazy, hot and humid. Not up for battling the beach traffic, I racked my brain for something we could do with the girls in the yard that involved cool water. For a brief moment, I thought of pulling out the Slip 'N Slide, until I remembered that to use the classic lawn slide, Luna would have to slam down on her chest and slide down a wet, plastic sheath; and risk submerging her scar in an inch of water. So, that was out.



Post-open heart surgery, it is recommended that the patient doesn't swim for five weeks or participate in contact sports for eight. Swimming is off limits because you don't want to run the risk of the scar-which in Luna's case is maybe 6 inches or so-getting so saturated that it breaks open. Contact sports must be avoided because naturally a blow to the chest, after a major surgery in which the heart is moved and hardware is inserted into the body, just isn't a good idea.



Luckily The Architect had already considered these things and pulled out a fancy sprinkler and water guns for the girls. The sprinkler was purchased at Target for $10 and the squirters were four for a buck at the dollar store.

As you can see, a lot of fun was had for just $11!

Fontan Day Five (Big Sister, Big Sister)

I can’t complain. Really, I can’t. It’s Tuesday, we’ve only been here since Friday. And we were here last Thursday for pre-op, so I guess that counts for half a day. But, it’s still tedious. We’ve folded into a new month. June First today. And we missed Memorial Day weekend. It’s missing these types of landmarks that mess with you later. You feel gypped, off kilter, and find yourself later in the summer trying to recall what you did for unofficial kick-off of summer, and for the briefest of moments you actually forget, only to be disappointed when you regain your conscious footing.


On Luna:

She’s doing great. Chest tubes are out. X-Rays looking good. She does have low potassium levels, but with some regular eating we should be able to get those back up. She’s down to just one IV-in her hand. (Careless Mommy of the Year Award goes to me for accidentally pulling out Luna's IV while I was lying in bed with her. I looked down to see blood pooling in her blanket and on my shirt. Luna was sort of whimpering, and I started gasping and the nurse, thanks goodness, sprung into action and cleaned-up the mess.)

Her heart rate seems back on track too. No mysterious rhythms. And her blood-oxygen saturation levels off the vent are in the low 90’s. But really, they had been there before, but the big difference now is in her toes. Almost immediately after surgery her feet took on a healthy glow. Whereas before Luna thought she was wearing blue nail polish on her toes, now she’s sporting a nice nude look.

Perhaps the best thing to come from our extended hospital stay, is how our four-year-old is handling all this. The logistics of getting your child through three cardiac catheters and three open heart surgeries is one of the most difficult things to manage. What to do with our other child, commitments, and careers while we all hyper-focus on our youngest very noisy medical needs?

Our first born, Sienna, is a sensitive soul. No sooner had she mastered speaking when the child started spouting off a steady stream of conscious chatter; often having to do with the trees breathing in too much exhaust, the animals left out in the cold, or the flowers not getting enough, or getting too much rain. So, Luna's medical condition has always been something of a hotspot with her. Or so I had thought. In Sienna's four-year old brain, Luna’s heart is “on the outside”.

Thus, the thought of bringing Sienna into the hospital; where even the most seasoned parent can crumble at the sight of some of the patients-was simply nerve racking for me.

But Sienna did great. On the way in, The Architect prepped our precocious four-year-old; “You’re going to see little boys and girls who are sick and look different, but like Luna, they’re all here to get better”.

“I KNOW DADDY!”

And indeed, Sienna was as cool as a cucumber. I caught her wince just slightly at Luna’s tubing protruding like a plastic octopus from her chest. But otherwise Sienna was unfazed.

Later I brought her down to the food court where we hit the collective lunch break enjoyed by the staff of the several hospitals right in the area. This seemed to bother Sienna more than anything.

“Mommy, all the doctors and nurses left the babies alone in the ICU!”

Later, back in the ward, I thought I would try to capitalize on all this good-feeling toward the hospital, so I asked the four-year-old “do you think you want to be a doctor or nurse when you grow up?”

“No, Sienna responded, “I want to be a fire woman so I can put out all those forest fires and save the animals from burning.”

And so it begins. (Fontan)

Luna looking like a day at the beach the day after her surgery.

Yesterday Luna had her Fontan surgery. We had just been here about a month ago. The Architect and I once again rose at pre-dawn and precariously lifted Luna out of her crib and gently slid her into her car seat for our drive into Boston. We know the routine now. First it’s to Admitting for a 6 am arrival where Luna gets basic vitals taken and NPO status (when did she last eat solids, milk and clear liquids). From Admitting families are taken back to the pre-surgical holding areas. Tight spaces with beds and TVs and two chairs, separated by curtains fashioned from cheap fabric in geometric patterns.

The holding areas are a surreal experience. It’s there you wait for your child to be taken from you, so in our case, they can perform a six hour open heart surgery-in which they will move your child's heart (this detail haunts me, if I keep bringing it up, it’s because I want to desensitize the thought-like how one does from repeating any word fifty times over so it becomes meaningless, almost silly sounding). But luckily The Architect and I were kept busy simply trying to distract Luna from her grumbling tummy, so we had more immediate issues at hand.

After a short wait, anesthesiology came in and administered Katemine-also known for its street name of Special K-to the kids including, of course, Luna. The idea behind giving this powerful narcotic is to make it easier for the kids (and the parents) when it’s time for the doctors to take the child back to the OR. All the children in the holding area, and The Architect whose job it is to compute such things, estimated there were about 20 beds, which meant there must the same number of ORs-were given the happy juice. Within five minutes the mood changed drastically, the holding area was aflutter with children laughing and snorting, and for a moment you could almost pretend you were in a matinee watching Shrek. Luna reacted no differently. Within five minutes of swallowing the vial, Martha Speaks suddenly became the most hilarious thing the child has ever seen.

Once Luna was good and loopy, the anesthesiologists brought her back. She protested a bit, so Paul carried her to a place where she’d get to breathe the "happy strawberry air”. (More trippy drug references, I personally worry about future drug dependence problems for these heart kids than I do about the heart function itself).

The surgery was long-from the time Luna went in to the OR till the time she was wheeled out was about seven hours. Then it took another hour and a half for the team to clean and prep her for the ICU.

When Paul and I arrived in the ICU, she looked like this.



We’ve seen Luna like this so many times, we’re becoming numb. It’s almost like a fear of flying I just kicked for the same reason; the more you do it, the more you become desensitized. Public speaking is exactly the same way. Virtually any fear or phobia, from flying to public speaking to watching your child endure one invasive medical treatment after the other, can be mastered with sheer habit.

So seeing Luna with all the tubing wasn't difficult. It was the drama that unfolded next that was.

Some of you may remember this post I wrote on Luna’s “I do it” nature. Well, even under “enough sedatives to knock an elephant out” (direct quote from her nurse), the little stinker still would not quit. Luna wanted out. With two drainage tubes protruding directly from her heart, a breathing tube jammed down her throat, a catheter, and IVs coming out of each foot, her jugular vein and probably places I didn’t even detect in the tangled mess, the child thrashed and pulled and yanked and heaved to get up from under all her equipment.

Even her surgeon stayed on board to gently hold down her arms.

Finally, Paul and I were asked to leave. My motherly instincts told me it’d be better if she didn’t feel my presence, as all of us moms know, our children behave the worst for us.

Today when we walked in, the storm had passed, and Luna, though still somewhat constrained, dozed in and out in front of Curious George.

Her nurse told me later they had to administer something called a ‘Kamikaze Wean”. This, in short, means Luna got her way; that big ole breathing tube came out real fast last night.