Monday, April 5, 2010

A good picture of what's going on

Like I mentioned in my last post we got some great profile shots of Samuel at our amnio.

I guess one of the upsides of all these appointments is that we get to see him often! And while we've been used to one or maybe two (if we're lucky) ultrasound(s) in our regular pregnancies, with 4 or 5 pictures of baby, I have to say that Maternal Fetal Medicine sonographers are more than generous with the photos! Bless them for that. It is much appreciated.

It wasn't until we were on our way home from the amnio that we realized that those beautiful profile shots we got gave great illustration of what and where the problem inside his head is.

Look at this picture:

Awwww....told you he's beautiful!
And now look closely inside his head.
Do you see that most of it is black? That there is a rim of gray along the top of his head?
That's the problem.

Here's another shot where you can clearly see the fluid pocket:
Normally all that fluid (the black), should occupy a much much smaller space and be kind of in the middle of the head as you see it here. Imagine if you could put your fist right into the center of your brain. Rough example, but you get the idea. It should be a little pocket in the middle. It shouldn't be taking up most of the room inside his head the way it is.

The gray along the top of his head-that's where his brain is. The lower parts of his brain (cerebellum, thalamus, etc) are all in perfect form and right where they should be for now. But the gray matter, what we typically think of when we hear the word brain-the big round spongy wrinkly part-is being compressed against the top and sides of his little skull. With this view you can see how it is pushed up on the top, and with a view from the top of his head looking down, you can see how it is pushed against the sides.

As you can imagine, this isn't a good thing.

We did ask the sonographer to measure his head circumference and ventricles before we left, knowing before we even asked that over a period of 4 days since the last ultrasound and measurements, there may not have been any change. We also knew that even if there was no change over those days that it didn't mean that there would be no further change over the next two weeks, and vice versa-that if there was a huge change over those days, it didn't necessarily mean that it wouldn't continue to increase at that same rate over the next two weeks.

That's one of the hardest things. We watch and wait, putting each little piece of the puzzle together days and weeks at a time. And we have to keep in mind that though we may get a number of pieces put together and think we know what the picture in that puzzle is, once we add a few more pieces we may realize that it's a totally different picture than what we had thought. Not to mention that this puzzle has no defined edges; it just keeps getting bigger and bigger and there is no telling just how many pieces there are in this whole thing.

Anyway, his head circumference has not changed at all over the 8 days between our original u/s and the u/s at the amnio appointment. It was actually measuring just a slight bit smaller, though with the angle he was sitting it has hard to get a perfect measurement of the circumference. This is both good and bad. Good because if his head continues to measure at a "normal" size, this means less possible complications for me, and a more likely chance of a relatively uncomplicated delivery. Bad because if it were growing very quickly, it might allow more room for his brain to develop, and possibly mean a little less damage. At this point it seems that with the good there is always bad. We try to focus on the good.

There has been some change in his ventricle size. A normal measurement is less than 10mm or 1cm, with most babies measuring around 7mm (0.7cm). The sonographer showed us what normal size is in relation to his. It was sobering to see just how enlarged his are. Last Monday he was measuring roughly 1.5cms on one side, and 1.83 on the other. On Friday he was measuring 1.7 on both sides. While it's not good that the one side has increased, the fact that the other side has decreased means the general size of the ventricles combined hasn't changed much. Hopefully this means that the pressure inside his head hasn't really increased.

It will be interesting to see in 2 weeks and 2 days how much more things have changed. While we are anxious to see how things develop, it is nice that life is distracting enough that it isn't the only thing to think about all day every day. It is nice to feel at peace with all of this, knowing that while we selfishly crave a healthy perfectly functioning little baby boy, this is all in God's hands. If He should choose to heal our little Samuel and make him whole again for his life on this earth, it will happen. But also knowing that if this is not His will, we will be carried through the difficult days ahead, and that this little boy will be a blessing and a miracle in every moment that we have with him.

He already has been a blessing and a miracle in so very very many ways.

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