23 weeks, 6 days - New Diagnosis

I've discovered that I really don't like coming up with titles for blog posts.  I'm not that creative and thinking of titles takes too much creative energy for me.  I think I'm just going to use my 'pregnant age' as a title, and if I can think of a brief description of what the post is about, I'll add that.

**Completely different subject - Seth's surgery went fine yesterday.  It was a difficult day, but it's over.  The hernia has been repaired and my baby is home safe and sound.

Late yesterday afternoon, I got a phone call from our genetic counselor.  She said that the lab had done some more testing and that they were able to identify the entire extra chromosome.  This really surprised me - I was under the impression that they didn't think they'd be able to figure it out.  I sort of wonder if some lab technician was a little obsessed about figuring out Elliana's mysterious extra chromosome.  :-)  He or she is probably top dog in the lab now, the envy of all his/her coworkers, having identified this extremely rare disorder. 

Anyway, the mysterious extra chromosome is actually 2 extra parts of chromosome 9 attached to each other.  This stuff is sort of interesting to me (and my mom likes pictures), so I've tried to think of a way to 'picture' it. 

Any normal chromosome looks like this:

pppppp--qqqqqqqqqqqqqqqqqqqqqqqq.

Each chromosome has a bunch of black lines going across them, sort of like a bar code.  This is how the lab can identify each chromosome.

If I understand this correctly (and I may not), Elliana has two copies of chromosome 9 like she's supposed to, but she also has 2 extra copies of the 'p' arm, plus part of the 'q' arm, and all of those pieces are attached to each other in a mirrored image.  So her extra one looks sort of like this:

pppppp--qqqqqqqqqqqq-/-qqqqqqqqqqqqq--pppppp.

Elliana's diagnosis is Complete Tetrasomy 9p. 

There are only about 50 reported cases (that the genetic counselor could find) of Testrasomy 9p, and many of those are a different form, called Mosaic Tetrasomy 9p.  The difference between the two is that Complete T9p affects all cells of the body while Mosaic T9p only affects some cells of the body.

The rest of the information I have about this disorder sounds similar to what we've already heard.  The prognosis is still poor.  The prognosis is poorer for babies with Complete T9p versus Mosaic.  If they make it to birth, 2/3 of infants pass away within the first 2 months.  The other 1/3 have moderate to severe medical issues and delays. 

I'm looking at all of this information, thinking through the circumstances, and processing this new information - and trying to see the meaning of her name in all of it.  And I just can't see it right now.  I know it's there.  I know my Father answers prayer.  I think I just don't like the answer.