- Yesterday I had my MRI.
I had wanted to show you guys more of that
just so you knew what it was like for the experience,
but an MRI machine is like giant and magnetic
and it's in a hospital place where
you're not supposed to film anyway.
So like, there wasn't a possibility to get that for you,
and I'm sorry because I do want to help educate
people who are curious about like
what all these processes are.
Basically, an MRI is this large machine,
and you go into it, it's kind of like a tube that you're in,
like ugh (laughs), they like slide you into this tube.
They started off having me go in head first.
If you're claustrophobic or anything,
this is like a very intense experience.
I have gotten MRIs before and not had issues.
However, yesterday I had major issues.
I had a lot of trouble going in the machine,
and I wasn't expecting that.
I didn't know that much about how it would be different,
but what they did with this fetal MRI was
they had to strap this kind of
a little bit heavy thing on my stomach.
I'm assuming was for better like fetal image,
like it was to get the baby's brain.
Anyway, that was a little heavy, and then, I was on my back,
and when you're at this point in pregnancy,
lying on your back can cause issues with
like oxygen and it just causes some problems.
Most women are advised to be on
their left side when they lie down.
I kept going in on my back and I would,
and having this heavier thing also compressing on me,
and also, I don't know, I was definitely feeling
like emotionally really anxious.
It was a very intense,
like very tight tube that I was going into.
I've been in bigger MRI machines,
and this one was like really tight.
I'm sure there was some anxiety that was coming into play.
But basically, I would get in and be in for
like one or two minutes and panic,
and I've never had a panic moment in the MRI machine before,
and I would like have to use the panic button,
get taken out.
And I actually think I was,
like I was having issues because of being on my back.
I was getting close to fainting.
My skin got like really sweaty and clammy and faint,
and I was feeling faint and just really awful.
I would sit up and kinda breathe for a little bit,
then lie down, do it again,
and we got to a point where the guy was like,
you know, we're just gonna have to not do this today.
And I was like, that's not possible,
like we have to do this, we have to do this,
I have to know what's going on.
And I was like I'm just gonna get more pregnant
and it's just gonna be harder to lay on my back,
so can we please, can we do this
tilted a little bit to the left?
And he found some like pillows and stuff,
and we propped me up to the left side a little bit.
He arranged it so it would work.
It made it so the machine was even tighter
because I had pillows around me,
so it was like, and my arms like, usually,
they're by your side, and they wouldn't even fit by my side,
so they were like cramped like this,
and I could feel the machine as I went in,
like the edges were touching me.
It was that tight.
(laughs) So it was like a very, very tight squeeze.
He also let me go in feet first,
but my head was still completely,
like my whole body was in the tube.
That time I was totally able to get through it.
I did feel way better.
It was definitely, definitely an
issue with lying on my back.
I do think I had some anxieties and other things
that were exacerbating the lying down,
but as soon as I was able to tilt
to the left it was way better.
So I wish I had tried that a little bit sooner.
Really pushed for that a little sooner.
It's also like the whole MRI is longer
because it's a baby one and the baby can't move,
and you can't like tell a baby, don't move, baby.
And it's very loud, the machine is extremely loud.
I had earplugs in and like ear coverings,
but the baby doesn't have that,
so I don't know how loud it is to the baby.
I was worried about that too and like
how that would be affecting him.
The technician said that one thing that often happens
is it's so loud that the baby like
kicks around and responds to that noise,
and that makes the whole process even longer.
The amazing news is that (laughs)
our little guy didn't have as much trouble with it.
He was moving a little bit in the
first images that I was having problems with,
so he could have even just been responding to
my heart rate and what was going on with me.
But then, once I calmed down and was able to
handle it on my left side he was really still
and we got all the images that we needed to get.
Amazing.
I did not anticipate that being such a struggle,
but it was like, it was dramatic,
and it was okay in the end.
So my advice is if you ever need to do one of those,
make sure you do a little bit of a tilt on your left side.
I learned a lesson there.
I was like can I see the images (laughs).
Can you show me, I can't like, I don't wanna wait.
And they're like, oh, we can't show you the images,
but I can send you home with a CD.
And I was like yes, please send me home with a CD.
So I waited a little bit and they printed out a CD for me,
and then, we were, you know, hours from home (laughs),
and hadn't eaten in a long time.
We'd been planning on going to eat afterward.
I didn't have a disc drive because like Christopher
had his laptop but laptops like don't get
disc drives incorporated in them anymore.
I called some people that I knew that lived in
the area and they didn't have disc drives either.
They're definitely becoming a thing in the past.
So we stopped on our way because there was traffic
and we were very hungry, we stopped and ate,
and I definitely considered buying a disc drive,
but I was like no, I can be patient,
and I don't know, like what am I,
it's not like it was gonna have results on it.
It was just going to have some of the images.
I didn't know if I'd be able to read them.
I didn't know if the images would even work on our computer.
So I didn't want to be like too rash and buy one,
but I was really, really thinking about doing so.
So then, we get home, I spend time with the kids,
cuddle with them, get them to sleep,
say goodbye to the babysitter, all that.
And we find our disc drive.
You can't hear it now,
we use this disc drive somewhat frequently,
however, this particular occasion,
it was making a lot of noise when you touched it.
And it wasn't working, it wasn't turning on.
So I was like what's going on?
I start shaking it a little bit
'cause I'm like what is all this noise,
and a guitar pick comes out of it (laughs).
Then I'm shaking it and lots, there's lots of noise.
Basically, it was filled with guitar picks and,
what are these things, and these like poker chips.
So apparently, I guess Duncan figured, like got into it.
So like, I'm like are you kidding me.
How is this now the thing that we're dealing with?
Christopher ran to Target and got another CD disc drive.
We ended up figuring out to get the disc to work.
I looked at it, and I have like trained
myself to understand these images at this point.
It didn't make a lot of sense to me.
There was an amazing picture of his hand.
Like blew my mind, I was not expecting any sort of
like hand or other body part images.
There was just this incredible like
right away image of his hand and it was like,
it was so beautiful and so like stunning and unexpected,
and I just felt like really calm
and like amazing after seeing that.
And then, there were a bunch of
really confusing brain pictures.
I was able to see the thing that
I knew that they were looking for,
and that was called the vermis.
I've really like, I've watched seminars on
finding a vermis on an MRI and an ultrasound,
so I was like I know how to do this,
I can do this, I can be a doctor (laughs).
I was looking for it, and ultimately like,
I found it and I was like I think this is the right size,
I think this is what they're looking for,
I think that, I think it's there.
But then, everything else.
I was like I have no idea what else we're looking for.
I wasn't able to completely figure it out on my own,
but I did feel like,
I felt more hopeful seeing those images.
I felt like one of the big things
that we were looking for was there.
So at that point I went to sleep,
it was really late, like after midnight.
I was really tired, pretty worn out from the MRI.
I tried to reach my doctor this morning,
had some trouble, and then, I got to them,
and they hadn't gotten the results yet.
I had to wait until like just about now.
My doctor called me and
it's kinda weird.
Basically, I was right when I saw the vermis,
and that that is fully intact.
Awesome.
That it's correct, positioned correctly.
He also said that everything else,
everything else looks amazing in the brain
and that everything he's seen so far on the other
ultrasounds like heart and all that stuff looked great.
However, the cerebellum,
which is the thing he initially had detected,
is still asymmetrical and it still
has one side that is smaller.
One side is 12 millimeters,
and the other side is 15 millimeters.
So this is called an asymmetrical cerebellum or
unilateral hypoplasia.
The thing is is that it's already,
even with the extra stuff like with the things like
the vermis being gone or something like that,
it's already extremely rare, it's a really rare condition.
What's going on now with us
is it's now like extremely rare
to the point where my doctor was
like I've never seen this before.
I've seen one other instance of
a asymmetrical cerebellum,
and that instance the brain was also
missing the vermis and had other issues.
All the studies he could find was the
asymmetrical cerebellum and then other issues.
To have a asymmetrical cerebellum and no other issues,
number one, is really hopeful.
Maybe he's just got a little asymmetrical brain,
and like bottom line, like I don't think,
I don't think it could be anything very, very grim,
which is definitely what we were looking for.
So that's really good.
Like all the things that were like
very, very, very, very scary I believe we have ruled out.
So that's amazing.
That's a huge relief.
At the same time, we don't have anything to compare it to.
We don't have any other like stories of,
oh, well, here's what happened in these situations
because we can't find other situations
where this has happened.
The next step is we are getting
referred to a pediatric neurologist,
so that's a specialist in the brain for kids,
and that person is a specialist and a high-up specialist,
so a specialist at Children's Hospital in LA.
So someone who's like seen a lot and knows a lot and,
hopefully, has some experience in this realm.
I've tried looking it up too,
and I see what my current specialist is saying
that it's just, it is really rare.
And I think, I found a situation of,
I found a study of like two cases, so two people
in similar situations and I think that they
turned out with no major issues.
So while there's question of like what could be going on,
you know, are we going to end up
maybe with some seizure issues or
speech delays or motor delays or like tics,
it's still, you know, some of that can still be scary,
but at the same time like,
yeah, sure, we could do that.
It's more that we just like we don't know.
We're gonna go to the pediatric neurologist.
The pediatric neurologist has to be someone
who's like seen a lot, and that's gonna take time.
So I'm sorry, I'm sorry to you guys,
and also like (laughs) this is just very real,
like this all just takes time and that
can be really, really stressful.
You guys are actually getting this
information faster than we got it.
We delayed posting and stuff last week 'cause we were
really, really, really, really upset and really scared.
Really, really, really all those things.
Because of that, this update is getting
to you faster than we got it,
so we had a lot of time that we were like
really, really scared and waiting for this news.
I know it's stressful for all of us.
I know you guys care about us
and care about this little guy.
I know that this is,
I think this has been a scary situation.
And there's a big reality that we might
not know if there's any differences for years.
Like we just might not know.
The big, big, big thing is that so far we're not looking,
we hope we're not looking at anything major catastrophic.
So that's really good news.
I think that just overall this is really good news
even though it's also not definitive,
there's gonna be a lot of unknowns,
and we're going to probably have
a lot of doctor's appointments
and where we'll be learning a lot about the brain.
And I should say, I'm sorry,
I should have said this earlier,
but the cerebellum is the part
that's in control of motor functions.
So that controls like movement,
voluntary, involuntary movement.
So that's why I was saying like
there might be tics or seizures.
It's that involuntary movement process
could be affected in some ways.
Or some people will have like paralysis
on one side or something like that.
It's a huge variety of things that could be affected,
and that's why they say speech too, I think,
because then maybe your muscles aren't working
like you're not able to control them the way you'd want to.
It's gonna be a learning process.
Hey Duncan, I love you.
Did you just wake up from your nap?
- Yeah.
- Making calls?
Who just called?
- Grandma.
- Oh, say hi for me, okay?
- Hi.
- So if you are having trouble processing
all of this information the way I have been having
trouble processing all of this information,
basically, the short summary is the
current diagnosis is unilateral hypoplasia,
which means an asymmetrical cerebellum,
which means one side is a little bit smaller
than the other side of the cerebellum,
which is in control of motor functions.
We've ruled out a lot of the big possibilities,
as well as a lot of the like medium possibilities.
Now we just need to move forward.
Now we need to, you know, continue our days with our kids
and at some point meet with a pediatric neurologist
where we're like getting scheduled for that right now,
but I don't know when it's gonna happen.
I guess just live life, hoping for the best,
and believing in the best,
just with kind of a lingering question mark.
But overall, with a lot of hope.
Love you guys, thank you for your prayers.
Thank you for your support.
This little guy's gonna be amazing, no matter what.
He's gonna be an incredible joy to our home.
We're so excited about him.
Really relieved to hear the news today.