Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.



Wednesday, October 31, 2012

"update"

So where are we...

I am reminding myself to be calm this morning although I am frustrated.  

After meeting with the OB yesterday, she did some digging into the previous level 2 scans at the peri's office.  It was determined that a fetal echocardiogram was not done at either appointment. This was such a disappointment to hear for a few reasons...
  1. I trusted the doctors to do the testing that needed to be done and the heart and GI problems were my greatest concerns.  Also, in our research, it seems fairly standard for babies with DS.
  2. We had already had a bit of questioning about baby's heart (fluid, presence of tissue or not and now the thickened heart wall).
  3. Babies born with DS have a 50% risk of heart related complications. 
I know that although these tests won't be able to fix anything; I do believe that they will allow for us to best prepare for baby's birthday.

So I am appreciative that our new OB believes that we should follow-up with this.  Next week I will visit the peri in their health system and she will do an echo to check things over well. 

I am more frustrated because they said it is a bit late to be getting an echo done, so that makes me a little anxious.  I am assuming, though, that because there were no MAJOR issues seen so far, that is why the other docs did not do the further testing.  Hoping that the little bug's heart is a-ok and we get a positive report on Tuesday.

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