Erik Quinn: The Heart of a Family: Baby Monitor

Saturday, November 11, 2006

Baby Monitor

The house is quiet this morning. I ran to the window like a schoolgirl to check for the dusting of snow that I keep expecting, but it has yet to show itself. Gracie is curled up in her basket outside my office door, and I hear only the obnoxious hum of the computer. I didn't sleep in until 5 a.m., but I'm not complaining. Close enough. I have not taken something to sleep for a good week now. Brian set the coffee up last night to begin brewing at 6:00 a.m., as he is not conscious at this hour when he doesn't have to be, and the scent of it is drifting up the stairs. Our coffee maker is noisily sputtering out the last of Brian's caffeinated love note to me as I type.

This week I tried to get some work accomplished at my desk while Erik napped. I have a Fisher Price baby monitor next to my out box I keep one eye on when Erik is home and I am upstairs. It looks a lot like a cumbersome communication device on the old television show Lost in Space. There are four arched bars under a smoke-tinted plastic cover that light up when there is sound next to the receiver plugged in next to Erik's crib in his room. Over the past two years I have mastered reading the monitor by sight and generally don't turn the sound on unless I need to confirm what I think is happening in his room. Here's how I do it:

ONE BAR: The bottom bar always has a faint, flickering glow. If the stereo is playing in the living room, the light barely flickers along with the music like an equalizer. It sometimes picks up Erik breathing or the knock of the UPS man.

TWO BARS: Likely snoring. Watch for the proper cadence. If the first and second bars light up and then go dark in a rhythmic pattern, Erik is snoring like a freight train. There is no need to turn the knob to listen. Sometimes the light will bleed up into the third bar if he really gets going.

THREE BARS: If all three bars are flickering merrily, Erik is talking to himself. Go ahead and turn on the dial to eavesdrop, as there is no cuter sound. I now hear real words here and there, most of which he says just for the pleasure of saying them. Last week I turned the dial up and heard "HI HI HI HI HI!" There was a long, silent pause, and then I heard him say very clearly, "WHEELS."

FOUR BARS: If all four bars light up repeatedly, Erik is officially as mad as a wet hen. The madder he gets, the more likely all four bars will illuminate, stay lit as he empties his lungs, and cast a scarlet glow over my desk reminiscent of a busy night on the streets of Amsterdam. Something is wrong. He has likely fallen asleep and awakened in a foul humor. There is no need to turn the speaker up. Go!

I wonder if mothers ever cease feeling that fear deep in their gut that blossoms when their child sleeps in an extra hour. I'm not one to ask, but I doubt they do.

I remember sitting here with a very round belly just a few days away from delivering Erik. I had just set up the monitor, a new, electronic lifeline to the freshly painted, kiwi-colored room below me and found myself wondering how my baby would sound on it. I even turned it on and watched it glow, wishing he could somehow say something to me, but the bottom bar only flickered along with the noises in the empty house.

We received our newsletter from WSA yesterday. In it was the story of two children who had passed away this year. One was a 16-year-old girl who had a history of serious heart problems and died in gym class. The other child, a 9-month-old boy with WS, passed away this February. Like Erik, the problems with his cardiovascular system were minor. His first months were eerily similar to Erik's (constipation, colic, special formula). Like us, his parents threw themselves into learning about WS and cared for him the best they knew how. He began to thrive but passed away suddenly from cardiac complications that were "undetectable while he was alive."

Most kids with what Erik has seem to eventually thrive, although from my experience with this wonderful group of people affected by WS and my own child, I know too well that what sustains us in life and we take for granted is often a struggle for these kids in terms of nutrition and getting the brain to work in harmony with muscles and joints. Their bodies are missing elastin, a key component in connective tissue that when deleted can lead to cardiovascular problems. Even their brains are now known to have a different structure than what is typical. I am amazed that my child has survived such a brutal deletion of genetic material and that there aren't more problems as a result.

Erik is a miracle to me, but I will never be able to completely relax if he sleeps an extra hour, no matter how old he is. This Fisher-Price monitor will likely be one of the last of Erik's baby things I pack in a box and slide into the darkness of the attic. I have learned to feel those four bright red bars inside of me and will forever feel them flickering, whether I am separated from him by a couple of walls or a few hundred miles.

Two to three happily flickering bars. Time for me to go.


Blogger Aspen said...

You move me with every word you type. I can feel my inner monitor start to light up when I read your words. The fear of something going terribly wrong will always haunt me. As I type now, I can hear Daven happily playing in his crib and singing along to the movie he is also watching. Like you said, this is the time when I have a permanent smile on my face. I know he is safe and I know he is happy.

Thanks again for all you say. You have warmed my heart on a very cold morning. Snuggle up girl, winter is comin!

Love you!

9:19 AM  
Blogger Nicole said...

Hi Nancy,

How funny that I'm reading your post as I have my baby monitor staring at me. Emerson is napping and I have the faint noise of her white noise machine coming from the monitor. It is so hard not to be paranoid once you have children. Just the other morning Ella slept 30 minutes past her wake up time. My husband and I instead of relishing this extra sleep were having a conversation about whether or not we should go check on her. She's 2 1/2. I feel like my children carry my heart with them. I don't receive the WS news letter. How awful to read about (let alone experience) the loss of a child. It is beyond comprehension. Gotta go. I'm going to wake up Em and give her an extra snuggle. Love, Nicole

9:29 AM  
Blogger Kerry said...

I put Brady down for his nap; telling him to "sleep 2 hours, even longer if you want". :) Brady has heart problems - PVS and SVAS - and although they are getting better as he gets bigger, they are still serious. It never occurs to me he won't wake up, as my inner optimist won't let me. HOWEVER, I do remember checking in on Michael when he was sleeping as a baby (new mom I was!) to see if he was breathing - and when he got his tonsils out and we couldn;t HEAR him anymore, we would check often, and that was when he was 5!

Love your story - how cute to hear him laying there saying "WHEELS" :)

Love -K

9:45 AM  
Blogger Teresa & Shawn said...

No, you will always check on your child when they sleep late. I still do it to my almost 4-year old (not that that's that old yet - wow, how many "thats" can you put in a row?).

The 16-year old you mentioned was in the next town from me. That was a horrible day for me. One of the really BAD WS days in our household. Okay, I'm becoming a downer to myself now....

5:55 PM  

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