I’ve reached 30 weeks with Aaron’s pregnancy. I remember back when we were first given his diagnosis of Trisomy 13, I was warned that he could pass away soon, that making it to term was unlikely for “these babies”. So the fact that we are here at 30 weeks is no little thing to me. He’s growing, he’s kicking, and if I didn’t know any better I would just assume he’s like any other baby of mine. He’s doing all the things that the rest of them did. In fact, so far he’s even growing the same, which is another surprise because T13 babies are supposed to be small and have slow growth in utero. But so far Aaron is growing right on track with typical babies at 30 weeks. He’s getting big!
And so am I.
My stomach is really starting to get heavy. I feel the typical ligament stretches (which I swear are worse than labor pains) and I’m slowing down a bit around here. My sciatic nerve is giving me pain, which usually happens to me in the third trimester. And bending to pick things up just about kills my back. Thank goodness I have many children around me all the time so I can say, “Hey, can you pick that up, please, so I don’t have to bend?” And if anyone ever catches me bending to pick up something, they will yell, “Mom! Don’t bend!”
The hardest thing for me during my days is my sweet little toddler boy, Aiden. At two years old, he can walk everywhere, even up and down the stairs, and doesn’t need me to carry his 35 pound body around. But there are times when he just won’t cooperate. Like for instance, when he’s downstairs and I notice he needs a diaper change.
I will say, “Hey, let’s go upstairs so I can change your diaper.”
And he will say, “No. I clean! No change my diaper!”
and I’ll say, “No, you have a poopy. I can smell it.”
and he will say, “No, I no have poopy. I clean!”
So then I have to pick him up and carry him upstairs because he will drop his weight, yelling, “Noooooo!” and will refuse to walk upstairs with me. These little battles kill my back. And with a two year old, these battles happen often in a day.
“Let’s get into the car to pick up the guys from school” says mommy.
“No! I stay here.” says the heavy, defiant toddler.
So mommy picks him up and carries him to the car, then has to wrestle him into his carseat.
“Let’s get out of the car now. We’re home.” says mommy.
“No!” says the heavy, defiant toddler. “I stay in my carseat.”
So I have to wrestle him out of the car seat, and he gets away from me a scrambles up to the front seat of the car. Then when I reach for him, he jumps into the back. Then I grab for him again, and he jumps to the front. This can happen five or six times before I just give up, shut the door to the car and walk away. He then realizes I’m going to leave him out there in the car by himself and will yell, “Mommmmmm!” and then I go back, I open the door, and he hops right out. (Of course I’d never leave him out there, but he doesn’t know that, thank goodness. Or we might be out there all day playing this game.)
By the end of each day, thanks to this sweet boy, this mommy’s back is completely done. The good thing is, when I wake up in the morning it’s like a do-over. No pain. I feel great! But then it starts all over again as they day goes on. Ah well. Such is the third trimester.
Okay, so now for an update on the pregnancy and how little Aaron is doing at 30 weeks.
I met with the neurosurgeon to go over the MRI results. Here is how our meeting started off:
Me: So, is the encephalocele fluid-filled or does it have brain tissue in it?
Dr. Neuro: Well, it’s really hard to tell from these images. The image isn’t really too clear. We really won’t know for sure until after he’s born.
Me: Okay…well, is there skin covering it? or just membranes?
Dr. Neuro: Well, it’s really hard to tell from these images. We really won’t know for sure until after he’s born.
Me: All right. Well, can you see if the entire vermis is missing in the cerebellum, or if it’s just underdeveloped?
Dr. Neuro: Well, it’s really hard to tell from these images —
Me, interrupting: Okay, let me just stop you right there. What can you see? Anything? I mean, it seems like having this MRI done was a waste of time.
Dr. Neuro: No, it was good to have it done, actually. Now we know what to expect.
Me: Really? What do you expect after seeing these unclear images?
Dr. Neuro: Well…we know where it’s located. We know the size of it.
Well, that’s something, I guess.
Anyway, after further pressing him for information and making him give his best guess from what he sees on the “unclear” MRI images (so that my 35 minute drive to consult with him wasn’t a complete waste of my time) here is what I was told:
The encephalocele is about 1 inch in diameter. That’s considered small. It is located on the top of his head, slightly down towards the back. It’s considered an occipital encephalocele. From his best guess according to the MRI images, it appears to be mainly fluid-filled. So that’s a good thing. He also believes that it’s covered with skin based on the thickness that seems to be surrounding it, but he’s not 100% sure of this. We won’t know this until Aaron is born.
As far as surgery goes, if the encephalocele has no skin covering it, he will need surgery right away (unless it’s evident that he’s going to pass soon after his birth, then of course we wouldn’t subject him to a surgery) But if he seems to be stable and doing well, then a surgery would be done to remove the encephalocele within the first 2 or 3 days after birth. Why so soon? Because there is a high risk of infection to his brain if they do not repair it within that time frame. However, if there is skin covering it then surgery won’t be needed right away. The skin would protect his brain from getting an infection.
As far as what kind of delivery I should have, the neurosurgeon says that after having nine previous deliveries of very big babies, I would have no problem delivering Aaron naturally, even with his encephalocele. However, if I do that, I risk rupturing it as his head passes through the pelvis. Of course I don’t want that to happen to him. So right now, I’m leaning towards having a C-section. Still not 100% sure about this. I will talk to a few more doctors, including my OB and a neonatologist.
So that was about it for the MRI results.
Last week I had another ultrasound. This was 4 weeks after my last one. My perinatologist told us that Aaron’s size and weight is that of a typical baby. He is approximately 3 pounds 2 ounces (at 29 weeks) and his bones are measuring long. She seemed surprised by this. “Katrina, you have a really good size baby in here.” were her exact words. It really made me feel good to hear that. I don’t know why. I mean, I know he still has the Trisomy condition. That hasn’t changed. But I guess when something is “normal” with him, I grab onto that and just enjoy it. And I’m not sure that’s such a bad thing to do. After all, finding joy in this pregnancy is healthy for me.
She also confirmed that the encephalocele is staying small at just 1 inch in diameter. Last ultrasound she said it was 1.5 inches in diameter. I doubt it’s shrinking, so perhaps the ultrasound images aren’t all that precise, either. A lot of what we “see” right now will have to be reassessed once he’s born, anyway. But it is staying small, and that is the important thing.
We took a very close look at the encephalocele. She even looked at different angles of it. And the space inside of it clearly looked dark. Dark means fluid-filled. If there is white, then that is tissue. Here is an image of the encephalocele at this last ultrasound scan.
The arrow points to some white tissue that is probably just a covering of the brain, not actual brain tissue. All that clear black space inside it is cerebral spinal fluid. Just off to the right of that black circle (the encephalocele) is the top of Aaron’s skull. So you can see how the encephalocele is growing out of the top/back part of his head.
During this last ultrasound, the perinatologist told us that Aaron’s enlarged kidney was not retaining any excess fluid, that it seems to be functioning just fine. It’s just larger than the other kidney. She says this isn’t an issue. Very cool to hear that news.
She also looked more closely at his cerebellum and said that the vermis is either missing or underdeveloped. Up until this point, it has always been completely absent. But now, she seems to “see” something in that space that makes her believe it might just be underdeveloped. Very cool to hear that news, too.
She pointed out his bilateral cleft lip and palate, and that hasn’t changed. We don’t expect it to. That is not a threat to his immediate survival, so although it’s not a fun thing to have (he will have to be tube fed) we aren’t too worried about it at this point. He will just have a quirky-looking top lip. And that’s okay. We will all love him just as he is.
All in all it was a very good visit. Rich and I left that appointment in good spirits. Just happy. Holding hands and talking about how good our little boy seems to be doing, despite his condition. We’ve adjusted to the Trisomy diagnosis, and we are just enjoying Aaron for who he is. He’s our son. We love that he’s here, growing in my belly. We are hopeful that he will be born safe and will be well enough to stay with us for a while. It’s just a really, really special time right now, during this third trimester.