Scary Diagnosis for DS

[jentina]

I just wanted to share our news. We found out on Thursday that Ellis has a heart defect and we're sort of reeling from that. I'd been crazy worried about him for his entire life (all 5 weeks!) I guess I had something real to be worried about. He had a bluish color around his mouth and so we ended up taking him to the ER. They actually found two heart defects, neither of which are immediately life threatening but both of which are scary to think about. We'll be seeing the specialist in the next few weeks and will have more information at that point. The good news is he's acting completely fine except for his goofy blue coloring. Also, my cousin actually had a very similar (if not the same) defect and he's 36 and just fine. And now that I know what it is, I'm less worried. Is that crazy? It's like I have something to focus on so I don't have to be completely freaking out about the what-if's.

We're trying to be positive and keep enjoying our sweet boy (lots of pictures on my blog!)

[eilonwy]

Iknow just what you mean. Not knowing is scarier than knowing something scary. I've been through it before, I'm going through it now.

[operamommy]

Hugs to all 3 of you. Keep us posted.

[lincap]

Hugs

Keep us posted!

[steph117]

Oh, Jen, ! I'm glad you got a specific diagnosis, though, & that your cousin is living proof that it's a manageable issue. I hope that your visit with the specialist gives you more reassurance.

[Dea]

ohhh hugs!!!
It sounds like Ellis has something similar, if not the same, as my DH had as a baby. He had it all fixed and he's a healthy 29 year old now. His life has been totally normal.

[flapjack]

ITA with the whole knowing is easier than not knowing. I'm so glad you trusted your intuition. Are you in contact with any other parents of kids with heart conditions?

[Jezzy]

[nausicaamom]

s - Be sure to check out the Special Needs Forum for info and support. I know it looks like it's all about autsim, but I know there are several moms there dealing with heart issues with their little ones.

[birthmommom]

so glad you found out before it was something bad.

I saw your pictures...he us super cute.

[jentina]

Thanks for all of your well-wishes. We're keeping our fingers crossed for the appointment on Monday and enjoying our cute boy. I can't believe he's almost 6 weeks old! Yikes!

[Jezzy]

let us know how it went