Doctor listens to his heart with a standard stethoscope. “Wow” he mutters under his breath. Andy and I look at each other. I pace the small room. Technician comes in and does her thing with the ultrasound machine for 30 minutes. No speaking. No feedback, comments, or any indication of what she’s seeing. Henry starts out okay. He just lays there silently. If you’ve been around him, you know that he has A LOT of energy…so this is highly unusual. As I stood there and saw my little hyper boy calm and collected, I had to fight back tears. It broke my heart. It meant that he was used to this. That he knew what to do. I didn’t want my little boy to have to be used to having his heart inspected. It was strange to be upset that he was quiet. I guess it made me realize his reality.
But, I guess God heard me thinking and taught me a valuable lesson. Which was: be happy with the blessings you have been given…it could be much worse. And then, Henry decided he was not happy about having to lay flat on his back for 30 minutes. Andy and I desparately do whatever we can to keep him there. We take turns. Like shift work. The room is boiling hot from the giant ultrasound machine. Henry screams most of the time. Somehow, as exhausting and stressful as that was, I felt better about it. It made me a little happy. I understood in a small, miniscule way what other mommy’s must feel when their chroncially ill children no longer cry when they get shots. It made me thankful beyond expression that this is all we have to bear for now.
The technician says she wants the doctor to double check some things. Andy and I look at each other. Doctor comes in and looks at Henry’s heart for another 5 minutes or so. We keep up the feeble attempts at making our son happy. He wants none of the bagel I brought…or my cell phone…or our silly songs…or tickling his feet. 40 minutes feel like an eternity.
The doctor flips on the lights, says nothing and leaves to his office. I see him punching numbers from the chart into a calculator. Andy and I say nothing. We just look at each other. He comes back. It is here that I could have burst into tears at the word “boo”. I literally braced myself for the news of surgery.
“okay, it’s the same as last time. come back in five months.”
ARE YOU KIDDING ME????!!! What the hell was the ‘wow’ for? Why would you do this to me??? Do you have any idea how parents analyze each and every facial expression you make…how we scrutinize every sigh and breath and move…and if anything from the visit is even slightly askew we automatically assume it’s bad???!!!
I hate these visits.
He again expresses concern at Henry weight (19 pounds at 13 months), but doesn’t concede that it may have anything to do with his heart when I explain that we’ve ran tests and there’s nothing wrong metabolically or nutritionally. He also doesn’t seem to ‘buy’ that Henry’s just little. So, I push a little for surgery sooner. He won’t even entertain it. Frustration, anyone?
I leave exhausted.
We go back January 5th. Check back then. I guess.
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oh, man, i’m sorry jeannett. how frustrating! you’re on my heart and in my prayers…
oh jeannett i’m so sorry! SO frustrating, so much waiting and not knowing and how irritating to have the doctor “concerned” about the weight but not offering any solutions.
i’ll keep praying. been meaning to email or call you. will do that soon. love you guys!
Sweet Henry, we love you!
I’m so sorry, Jeannett. What a heavy weight to carry. I’ll be praying too.
You have a pretty amazing kid.
i don’t understand why the doc is so concerned about his weight. i think esther weighs less than henry and aren’t they like 2 days apart? being concerned about his weight and not pushing for surgery soon doesn’t make sense to me, but i’m sure i don’t understand all the details. sorry about the waiting part–that is so tough. clearlake–isn’t that in chester? my sister has a house there, too. looks like a fun time.
oh wow, that’s so much to go through emotionally! Any thoughts on getting a second opinion?
Hi, I came across your blog from Lisa’s “It’s the Little Things” blog list. I had to comment when I saw this post about your son’s echo and heart condition.
My daughter is close in age to your son and underwent open heart surgery in January for Tetralogy of Fallot. She had a hole in her heart and pulmonary stenosis. She still has moderate stenosis which they are keeping an eye on and she may need another surgery or cath sometime in the future if it worsens.
Anyway, this post tugged at my heart as I know COMPLETELY what it feels like to watch your child on that table being poked and prodded. I’m so sorry for what you guys are going through and I know that the wait to fix the problem is excruciating. I’m sending up a prayer for your little guy and for you as you endure this next 5 months of waiting.
My little Lucy is also a peanut (just under 16 lbs at a year), and this is even after her surgery. Like your son, she’s been tested for everything else under the sun and they were unable to find anything slowing her growth. I think she’s just going to take a while to catch up. I’m sure it’s the same for your son. And it looks like he’s on track for all his development, so I say size doesn’t matter!
Feel free to e-mail me if you ever need a listening ear or someone who knows what you’re going through.
(hugs)
Jessica (jessica.ballanti@gmail.com)