Friday, December 14, 2007

Pulmonary Stenosis

That's what my baby has.

It's weird to think there's anything wrong with him. He's happy, smiley, he doesn't look sick, he isn't a funny color, he doesn't act weird...he looks like any other normal baby. (Okay, maybe smaller).

So, its hard to fathom that there's something wrong with one of his most important organs. Something so wrong that it will require medical intervention....surgical intervention. Not just some prescription medication.

How did this happen? Why? Will he be okay someday? Or will this be the beginning of a long string of future issues? Will this surgery fix it all and make it go away? Will this be just a blip on the radar screen of Henry's life?

I know the doctor says it's not a big deal. But then again, it's not his precious baby lying on that cold table. It's my baby. So, while I'm so glad that we know of the issue and are working to remedy it, my stomach still does somersaults at the idea of seeing my little boy hooked up to anaesthesia, IVs, and other assorted machinery. My skin crawls at the thought of something actually touching his heart. My own heart breaks at the knowledge that he will be sore at the entry site and won't be old enough to convey the pain to me...and that I won't be able to make it all better for him.

I'm just sad for my little boy. I'm pretty sure it'll all be okay and everything will be fine. But I'm still really sad. I had no idea being a mommy would be so heartbreaking. I didn't think for a moment that I would ever have to deal with something like this. It's a helplessness I don't think I've ever felt before. Like Brianna said: I didn't check this box! I want to make it go away. Wake up and roll over and tell Andy that I just had the most horrible dream...

I'm still very aware of the fact that really, of all things, this isn't so bad. Logically I know that we're lucky by many standards. We have an amazing doctor, the technology to fix it, the insurance to cover it, and that of all four heart valves, this one responds the best to the angioplasty.

So, if my brain knows all of these things, why isn't it conveying that message to that soft spot in my chest that has grown tenfold since becoming a mom? I went about my day perfectly fine. It wasn't until now that I realized how hard I really am taking this. I try so hard to be tough. But it's all a total farce.

For more info on pulmonary stenosis see this link.


Lara said...

Oh dear, that is frightening. Your sadness for little Henry is a beautiful picture of your love for him. You're such a good mommy.
Love you guys, I'll be praying.

Brianna Heldt said...

Interesting how it hits at different times...seems like you can feel like you're totally handling it a-okay, then the next day is awful.

Hang in there and let us know if we can help in any way. Do people with this condition have failure to thrive? (Because he seems to be thriving!) Anna was in the third percentile for weight until she was two--and totally healthy. Kaitlyn on the other hand...I wonder how they can tell if a child is small due to genetics or small due to something else (?)

Anyway we're praying, we're here, and Henry is precious and we love you guys!

Lisa Leonard said...

That's what kids do to you. You think you kinda have things figured out and then you realize as a mom you have this overwhelming love and overwhelming lack of control and it's terrifying. Regardless, God is in control just as he was before (when I thought I had it figured out). God is good and he loves little Henry more than you do and more than you can imagine. That's a place to rest. Hugs.

Joy said...

jeannet, i'm so sorry. i don't want to be one of those people who says the wrong thing (hopefully i haven't done that already) so i will just say that we're praying for you.

T.H. said...

I just came across this while researching my own pulmonary stenosis.
I am 39 years old, and my pulmonary stenosis is congenital. I have had very few side effects over the years, other reduced stamina in major activities such as basketball. I did play baseball and tennis avidly as a teen-ager, and I'm still active today.
I may be facing surgery for my condition in the next few years, the first time I will require anything other than a regular checkup for the stenosis.
Best wishes and prayers to you, and rest assured, there is normalcy with this condition.