Scary Diagnosis for DS - Mothering Forums

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#1 of 12 Old 03-29-2008, 10:18 PM - Thread Starter
 
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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!)
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#2 of 12 Old 03-29-2008, 11:04 PM
 
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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.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#3 of 12 Old 03-29-2008, 11:13 PM
 
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Hugs to all 3 of you. Keep us posted.

A happy woman
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#4 of 12 Old 03-29-2008, 11:26 PM
 
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Hugs

Keep us posted!

Linda - Mom who will never be afraid to use an Epi-Pen again! Epi-Pens save lives!
Charlie 4 yrs old, Harry 2 yrs old & someone new March 8, 2010!
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#5 of 12 Old 03-30-2008, 01:19 AM
 
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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.
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#6 of 12 Old 03-30-2008, 02:40 AM
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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.

Deadra, Wife to Adam , Mama to Beatrix (02/08), Hudson (01/10), and Mazarine (12/13)
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#7 of 12 Old 03-30-2008, 05:38 AM
 
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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?

Helen mum to five and mistress of mess and mayhem, making merry and mischief til the sun goes down.
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#8 of 12 Old 03-30-2008, 06:53 AM
 
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#9 of 12 Old 03-30-2008, 10:25 AM
 
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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.
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#10 of 12 Old 03-31-2008, 12:03 PM
 
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so glad you found out before it was something bad.

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

Allyn birthmom to S 3/12/03, placed in open adoption 4/06, married to W 6/22/07, mama to H 2/5/08, mama to M 8/26/12.
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#11 of 12 Old 04-01-2008, 06:51 PM - Thread Starter
 
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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!
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#12 of 12 Old 04-02-2008, 05:40 AM
 
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let us know how it went
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