Thursday, November 17, 2011


The good part with having a baby who had open heart surgery at 9-months-old is that it provides a pretty high bar to compare everything else he goes to.  Since Joey had his surgery in June, most every challenge he has faced has seemed so minimal, so marginal in comparison. 

Last week it was the eyes and the latest on his nystagmus and the way he holds his head for his "null point", which is the point in which he can see without his eyes jittering back and forth.

This week, after many failed hearing tests and opinions from three very good ENT doctors, he went in for his ear tubes.  The crazy thing is, Joey has never had a single ear infection (knock on wood).  That was never the issue.  The issue was that he had constant fluid in his ears, which made him hear as though he constantly had construction-site grade ear plugs in.  This in turn caused him to fail hearing test after hearing test.

Before the season of colds, croup and flu, we wanted to get the tubes in.

I have hopes that these tiny little tubes will help him to start crawling, start talking more, take longer expectations might be a little high.

The bad part is...

I wasn't really ready for this little "procedure".  As we drove up to University Hospital at 4am I suddenly wished I had remembered to bring the anti-anxiety medicine I took on that 8th day of June when we handed Joey over to anesthesia for his heart surgery.

Parking in the dark early morning and walking up to the waiting room was all too familiar.  The flashbacks hit me like a ton of bricks.  Sitting there and trying to keep him happy since he couldn't eat.  Watching the other families wander in sleepy-eyed and scared.  Wondering what their stories were.  What surgeries and procedures would their babies be going through?

Changing him into the hospital dressing gown and then walking him down to the yellow line, we handed him over to two really nice anesthesia doctors who said they would take good care of him.

It was all a bit too much and on this wild ride of our baby boy having an extra chromosome I was reminded again of how vulnerable he really is.  How vulnerable I really am.  How just when I think we have things figured out there is a little fork in the road that I didn't anticipate.

This time the wait was less than an hour and we jumped out of our seats when they told us he was in recovery.  I couldn't get to him fast enough.  He did amazing.  After a minimum 30 minutes in recovery he was ready to go home and so were we.  He hasn't started crawling or saying Mama, yet, but we'll wait and see.


In the meantime, I try to walk that line of managing a sometimes overwhelming therapy and doctor's appointment schedule for Joey with making enough time to spend some alone time with Tommy.  

We had his first pre-school review this week and my heart aches because I felt like everything he doesn't know yet is directly related to the fact that I spend more time on Joey's needs than on Tommy's needs.

His last name?  He really doesn't know his last name?  Well, of course not.  We never actually taught it to him or even thought to teach it to him.  

Fortunately, that was an easy one.  He got it down in about 2 minutes and has been using it all week now that he knows he has a last name.

We're working on the counting from 1-10 (which I know he can do-- getting him to do it is another story), shapes, his birthday and a litany of things I haven't specifically been working on.

In the meantime, he still has a wonderful little spirit and personality.  Today he said, "Mommy, can we go on a date?"  I said, "Sure.  What will we do?"  He said, "We can just talk about our days.  How was your day?"

We're doing something right.  

Happy Friday!


  1. I had tears in my eyes after reading this. Such sweet boys you have!!! Never ever forget what a wonderful mom, wife, friend, woman, human being you are Jen!! You are an inspiration to many!

  2. So glad his procedure went well (Joey's that is). I can totally understand having flashbacks handing him off like that. And the photos are just adorable!

  3. I'm so sorry that you had to deal with the flashbacks of open heart surgery. Those are moments none of us want to relive but we will never forget. I love that smile!


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