Friday, February 27, 2009

Raising a child is accepting a lifetime of worry

"Have we heard the heart murmur before?" the doctor asked.

My heart felt like it stopped momentarily.


"Well, if we hear it before 12 months, we wait and see. If we hear it after, we take a closer look."

Jerry and I exchanged worried expressions in the small room while putting Allison back into her clothes at her suddenly not-routine 15 month check-up appointment.

Somehow, I found my voice. "What would that entail exactly?"

"Well, she'd get an ecocardiogram that takes a detailed look at the blood flow in her heart."

"Would that be done here?" Jerry asked.

"At the hospital. We'll set up an appointment for you."

It was an immediate crushing blow. I felt the weight settle in my chest. Jerry started asking all of the questions I wasn't able to. I could only stare at my little girl who looked so perfect and healthy -- something I apparently had been taking for granted up until a few moments earlier.

"Will it affect her development?"

"In almost all cases, no. It's just an extra thump of blood in between the usual two parts to a heart beat. We watch it. Sometimes it goes away, but most times they will have it indefinitely, grow up normally, live long lives and never know the difference."

"Will it hamper her ability to play sports if she wants to? Or affect her breathing?"

"No. It shouldn't."

"What's the worst-case scenario?"

"First, it is extremely common. About 3 in 10 of our patients have a murmur. Of those, most have what we call a normal murmur -- what I explained earlier. The worst case, about 1 percent of those maybe, have a very small hole in the heart. It may close over time. We just watch it. That's all."

But it didn't matter how common or how routine. Anything that required bringing my 1-year-old to a hospital for further examination had me instantly worried. I hadn't felt that fear since before she was born. I had forgotten the constant concern I carried around for nine months.

The doctor excused himself to set up our appointment and told us to meet him in the hallway once we had gathered our things.

"You okay?" Jerry asked me once we were alone.

I just nodded. We'd get through it. Even though I wasn't sure how.

A nurse was waiting for us with paperwork.

"Next Thursday at 11," she said. "There's no prep. No fasting. Nothing like that. They'll just need her to be very quiet, so bring a pacifier, a favorite toy, something like that."

I immediately flashed to Alli's favorite toys -- Bunny and Bear -- and pictured her launching them violently at the unsuspecting person responsible for administering her test.

"What can we expect? Is it a machine or something?" I asked.

"It's just like an ultrasound, actually. They'll use some jelly and a wand and get pictures of her heart."

That relaxed me some, but we'd still have the task of keeping her quiet and motionless. Something she was only being at the moment thanks to the first-ever lime lollipop the doctor had given her after two shots.

On the way out, Jerry and I weren't quite ready to part ways. We had driven separately so I could go to work afterward, but it was still too early for me to head to the office.

"Want to go to the toy store? We could get her something new to make the drive to New York a little easier."

Jerry's eyes lit up.

It was decided.

Playing with toys turned out to be exactly what all three of us needed. We pushed Allison around in the cart, and for once I didn't immediately reject the notion of getting more than one thing. In fact, we piled in a doll, a Googly ball, a snorting pig, a Slinky and a video of her favorite TV show -- most of which we decided to save as Easter presents.

That night I was a concerned mess, but I relaxed about it significantly in the days that followed. It was easy to because even with a cold, she's just an incredibly vibrant little girl.

The morning of the appointment, all the fears and worries flooded back. Jerry came home immediately after his radio show, and the three of us made a very quiet trip to the hospital with an arsenal of toys in an overloaded diaper bag -- including a few lollipops I had picked up after work the night before in a flash of what I had deemed parenting genius.

The only time I had been in that hospital before was my emergency trip in an ambulance a week after my miscarriage surgery. As the building came into view, I realized I had almost no recollection of that night at all -- something I felt grateful for.

Allison was quietly curious as we found a spot in the parking garage and made our way into the hospital using the elevator. Two nurses complete with matching scrubs and ID tag lanyards cooed at her genuinely.

The woman at the information desk phoned the cardiology department to make sure Allison's doctor had filed the correct paperwork and let them know we were on our way. First set of elevators immediately to our left. Second floor.

Jerry signed her in, and we took over a large swath of the waiting area with all of our stuff. It was bright and clean with a vaulted glass ceiling overlooking the first floor. Allison immediately introduced herself to the two older women sitting across from us by babbling and otherwise being her outgoing self.

We spent a long time waiting, but Alli kept us entertained, walking around, handing people Bunny and Bear and bringing smiles to many of the sick patients being wheeled past in beds. She just mastered what I call her "float wave," so she was more than happy to share it when I prompted her to.

I became so relaxed that I almost forgot the reason for our visit, until a very friendly technician came out to explain the holdup.

"I'm really sorry you've been waiting so long," he said. "The regular machine is broken, so I'm prepping our backup equipment. As soon as I have everything set up, I'll be out to get you."

He seemed caring and genuine -- two qualities that probably drove him into his field.

A few minutes later, he led us into a small dark room with a chair and an exam bed draped in a white sheet. He instructed me to sit on the bed with Allison and take her clothes off from the waist up.

He introduced himself to Alli -- something I found immediately endearing -- and explained he would be taking pictures of her heart from four angles, as well as checking blood flow. Then he would send the images to the cardiologists to examine, and our doctor would call with results in about three to four days. Apparently the backup machine couldn't send the images electronically, so our wait would be longer.

She cooperated at first, but after awhile, she tried her best to push the technician's wand-wielding hand away.

"She's surprisingly strong," he said. "I had a 3-year-old in here earlier who didn't have half of her energy."

"You have no idea," I said. "Actually, I don't think we have any idea what we're in for with her either."

Jerry dug out a lollipop at my request and that worked momentarily, but she still had one free hand to protest with. So I suggested giving her another one. Then, after the novelty wore off, she started flailing her fists with gooey Dum-Dums, leaving a sticky wake all over my sweater, Bunny and Bear, the technician's hands and mixing with the gel on her belly, prompting him to suggest grabbing a nearby towel.

"I think the lollipops were a bad idea," Jerry said.

But we didn't know how bad until we tried to take them away. She collapsed into a fit of hysterics I hadn't ever seen before. She convulsed into a full-blown tantrum complete with tears, screaming and throwing her body around in anger. She was so mad at me that she reached for Jerry.

Thankfully, the technician had excused himself to give us a moment to calm her down, but clearly the opposite happened. When he heard her explosion, he re-entered with backup.

"What's the matter little lady?" came a new female voice that immediately quieted her.

Jerry explained our well-intentioned lollipop idea gone horribly wrong. They only had one angle left to get on her heart and if they couldn't get it, we would have to come back and go through everything all over again -- an idea I didn't even want to entertain.

So I gave her tough love, held her tight in my arms and let the technician push the wand to her throat, aiming down to examine her aorta.

Surprisingly, she allowed it. It wasn't comfortable for anyone in the room, but they were able to get what they needed.

I cleaned her off, got her dressed and, as a reward, gave her a new blue lollipop that she accepted with joyful gusto. She cherished it, almost as if she knew it would be her last. Because she'll never get another one from me. As far as I'm concerned, she'll have to be old enough to drive to a store and buy one herself.

Although the technician said he isn't qualified to give us a definitive answer on a murmur, he did say he didn't see one, or anything that would be any cause for alarm. Further reassuring us, he said our doctor had sent over three toddlers this week.

"She does have a chest cold," Jerry said. "Is it possible he confused it with her congestion?"


We left feeling tried by the experience, but comfortable that no matter the findings, we have a one-of-a-kind girl. She certainly follows her own rhythm, that's for sure. Whether it's a unique beat in her heart or not.


C said...

If Ali is totally fine, I'd question a doctor that thinks a chest cold is a heart murmur. When I was little, my first pediatrician was an idiot and said my refusal to walk one day was just "a stubborn stage" when really I had a hairline fracture from leaping off my dad's lap. Although I guess a doctor who errs to the side of caution is better than a dismissive one.

Jaclyn said...

I can't IMAGINE the fear you guys were dealing with leading up to the appointment...and will keep feeling until the results are in.
But I'm so glad that everything went well (all things considered) and even the tech thinks things are fine.

Maria said...

I'm so sorry for all this, what a horrible amount of suspense. Please post the results as soon as you know!

Suzanne said...

My pediatrician thought my son had a murmur, but he also pointed out that when kids are sick and even just a little dehydrated the heart has to work harder making it just sound like there is a murmur.
We had a echo done, as well, and everything turned out to be fine. (I was sick with worry, regardless!)

Just thought that might be a smidge comforting, especially since you said Alli has had a chest cold.

Anonymous said...

I want to question the pediatrician as well for potentially misdiagnosing a chest cold as a heart murmur. That coupled with the fact that he has sent another three toddlers for an Eco makes me think something is a bit amiss.

Is there a Children's Hospital anywhere near you guys? They can often times give great pediatrician recommendations.

Ashley said...

I've had a murmur my entire life. I've played sports for years and have never had any trouble. Little Alli is more than likely going to be just fine! It's not like the doctor told you to drop everything and rush her over! :)

the_plainsman said...

No real problem with a Doc that may err on the side of caution. Sorry you probably have to wait until Monday, though.

Ray said...

So sorry to hear about this. I hope the technician is right and that it's nothing. Alli and you guys will be in my prayers. But you're right though, "You do have a one-of-a-kind-girl." Bless her.

Marcy said...

We had to take our son to the ER 3 times before he turned 5months old, two of those visits resulted in hospitalizations (3 days, then 7 days). They were for "minor" and "common" things (jaundice, UTI) but dear lord if those were not some of the most stressful times in my entire life. Long story short... I feel you. So glad Alli seems to be fine.

Mid-way through your post I was thinking how this was probably nothing, other than a typical example of American over-carefulness for fear of missing something and thus getting sued. I don't know if I'd switch pediatricians over this alone (would rather one that was over-examining things rather than missing them entirely), unless there's other red flags. Everyone makes mistakes sometimes-- even doctors can't be perfect always, after all.

Jessica said...

How stressful!

I was diagnosed with a heart murmur when I was around 6 or 7 & I must've grown out of it because doctor's don't even mention it when they listen to my chest now.

I'm glad you received good news! :)

Jen said...

I'm sure everything will turn out fine. She's a very strong little girl. David and I will be thinking of all of you.

SwissBarb said...

Aww don't worry, Alli is going to be just fine even IF she does have a heart murmur. I first was diagnosed with one before having surgery when I was 21 and then last year (at 31) before another surgery the anaesthetist reminded me of it.
I have never ever felt anything weird with my heart, I have been swimming long distances for 15 years and now train for 10-15 miles running competitions.
I went to a cardiologist to know more about it and even with all her machinery it took her some time to hear it and then she assured me it was really nothing to worry about, as in most cases :)

hannahannah said...

i had a murmur as a child as well and had a normal development and in the past year even ran my first marathon! i'm sure it will be fine. hang in there!