Friday, June 23, 2006

Today was just plain tragic.

Today was the hardest day of my life I think.

I'm sorry to have to post it here since this will be news to a few out there, but I just can't e-mail everybody right now.

Our little boy is much worse off than we thought last night after our first ultrasound. It's bad news, in that it looks like we will lose our son.

I am so sorry to have to blog this, but I have to.

At this point, we would have been happy to "just" have spina bifida to contend with as they first thought during yesterday's ultrasound, but it's much, much worse than that.

We talked with the genetics counselor this morning, then went to an ultrasound with the specialist and a tech there and the biggest, baddest ultrasound machine that took up part of a whole room.

We looked at the markers for spina bifida -- the slight misshapen skull, the excess fluid in the brain, and the spine that doesn't look like the straight little railroad track it's supposed to.

Then we moved on to the worst of it. There is a hernia at the point where the 2-cord umbilical goes into our baby. The fact that there is only 2 threads instead of 3 to the cord itself is an indicator of chromosomal problems, but a hernia at that point is the bellweather.

Then, there was the fact that both his feet are clubbed, and one of his arms is not developing with a normal hand.

And finally, the worst news -- his little heart, while beating away -- is abnormal in its symmetry and there's a valve that looks like it has not developed.

We gave in to an amniocentesis, which I had resisted before due to fears of it triggering a miscarriage.

In the end, it looks like our baby boy has two problems, which intertwine but aren't necessarily related. One is the spina bifida, and the other more serious problem, a chromosomal one. They are looking at the amniotic fluid to determine if it's the worst of our fears -- Trisomy 13 or 18, both of which are incompatible with life.

The statistics I got were that with Trisomy 13 or 18, the baby has a 90% chance of not making it to term, and of the 10% who survive to birth, another 90% die in the first year due to heart problems.

We have to wait til Wednesday to hear what the diagnosis is on the chromosomal testing. In the end, we may be forced into the worst possible decision parents have to make: to end a pregnancy before it ends on its own.

The heartbreak in our lives just continues. But like everything else so far, Brian and I are resolved to get through this too.

Thanks for your thoughts & prayers.

I still love this picture. I will treasure it always.


Miracles & Dreams said...

oh jules

I am in tears, I am so so sorry you & Brian have to go thru this, it's not fair... My heart goes out to you both

Yes that is one picture to cherish.

this breaks my heart because this is where I lost my william I so feel your pain, it is a different situation I know but I so feel it.

love your "Sista"

Katherine said...

I'm praying for a miracle.

My heart is breaking for you and your husband.

I wish there was something I could say or do.

Shelia, hobo said...

Jules, sending prayers and love to you and Brian, and for your son. Miracles do happen. We're all praying that the next miracle is yours.

Christa said...

I am praying so hard for a miracle for you guys. I wish I had words that could comfort you, or something I could do to help. You have been in my thoughts continually, and will be there through everything.

Vida said...

Jules, my heart is aching. I am so truly sorry, I have no words. Just know that I am with you, just squeezing you tightly.

Always thinking and praying...

Bean said...

My heart aches for you all over again, Jules... I'm so so very sorry :( *Hugs*

MissHelen said...

Julie, I'm so're in my thoughts...please don't hesitate to holler if there's anything I can do for you.


Cal said...

Oh Julie,

Our hearts go out to all three of you. Why this has to happen to such deserving people is inconceivable. We're at a loss for words to tell you how very sorry we are. You are in our thoughts.

Jer and Cal

Dori said...
This comment has been removed by a blog administrator.


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