I've been meaning to write for months to answer a question
we so often get asked; How did we find out Rowan was sick- when did we find
out- were there any signs?
When I look back on this blog and on post from before and
after, it looks as if one day things were great and the next day Rowan was in
the hospital. I guess that is partly
what happened, but when I think back, there is much more to his story.
My pregnancy with Rowan went well. I worked up until the day
prior to delivery and had no complications. I do remember a few times saying to
my friend, though, that something just didn’t seem right. I felt something was
wrong with the baby. I really just wrote that off as the worries expectant
mothers can get, though, and didn’t think much of it. Perhaps this was my
intuition- perhaps not.
On December 29th, I went in for a final exam to
see whether I was dilated yet. (I was due to have him on January 3rd.)
During that appointment, the doctor found out he was breech and they scheduled
a C-section for the next morning at 5:20AM.
What a whirlwind that was. Steve and I were in a bit of shock, but were
beyond excited to meet our son.
Lily went to stay with good friends of ours that evening and
Steve and I got things gathered- with much anticipation- to come home in a
couple of days with two wonderful
children.
At around 3 in the morning, I went into labor. I had
remembered from a conversation with a nurse the evening before that I was not
to eat or drink anything prior to surgery, but I really felt like I needed some
coffee, so I began to brew a pot. (this was about 4 minutes after my first
(hard) contraction- I enjoy my coffee… Rowan had different plans, though, and
my contractions came so fast I abandoned my illegal coffee project and Steve drove
us through an ice storm to Sanford. I’m not too sure when we arrived there, but
Rowan was born around 4:20- so it was fast.
He was born healthy, happy, and with the biggest cheeks I’ve
ever seen. All of his tests came back great- but I do recall his head
circumference being on the small side. No one seemed concerned, and I only
recall that fact in retrospect.
The next months went as you’d expect for any family with a
2-year-old, a newborn, and a partner working toward his PhD. It was busy and we
were sleep-deprived.
Lily was jealous of the attention her new brother was
getting, but we made sure to give her the time she needed. And if you know her
at all, she made sure she wasn’t forgotten about.
Rowan didn’t seem to do as much as Lily did when she was a
baby, though. He enjoyed just laying on his back and loved to suck on his
hands. I remember Steve and I having several talks about us needing to
stimulate him more, read to him more, and help him to hit his milestones. I
really thought we were not paying enough attention to him because our focus got
pulled away so much with raising our daughter. Rowan was consistently content,
though. He didn’t demand attention- so I assumed his physical weakness and his
lack of interest in grabbing for toys or books was due to parental ineptitude.
People would say, though, that he was ‘just a lazy boy’ or
‘he’ll get there when he gets there’, so I told myself that we were being
silly.
Rowan started up at the NDSU wellness center after the
summer when school began again for Steve. A couple of weeks in to the semester,
I received a call from Connie, who asked me if there were any excercizes they
could do with Rowan to help strengthen his muscles. He was now about 7 or 8 months old and could
not sit up by himself. He also lacked strength on his tummy. How nice of her to
call- so thoughtful. I listened to her and immediately called his doctor to get
him seen explaining that he was weak and didn’t seem to be hitting milestones.
He had an upcoming appointment, so she suggested just waiting the few weeks
until that appoint and seeing where he was at at that time. In the next few
weeks his strength did improve. The staff at NDSU worked with him. We did at
home, too, and I worried less.
One week in September of 2011, he caught a bug. He was
pretty groggy and was sleeping quite a bit. During the weekend of September 17th,
I thought I saw Rowan have a small partial seizure. I have had partial seizures
for years, and it seemed he was exhibiting signs. I saw him look to his left and just gaze off-
almost disappear for a short while. I’d seen him do this in the past and had
pointed out to family that perhaps he had a similar seizure disorder. Mine have
never bothered me too much- they don’t hurt and I just feel sleepy with no
desire to move or talk for a couple of minutes… anyway, again, we just thought
Rowan was tired or perhaps still battling his cold.
On Sunday, the 18th of September, I was feeding
him in his high chair- he used to eat so much! But during this feeding he
wouldn’t make eye contact and seemed gone. I googled ‘autism’ wondering if
perhaps he had that. Then on Sunday night I noticed what I was certain was a
seizure and told Steve I was taking him in in the morning to the doctor.
Sometimes I wonder why I didn’t take him in that moment- It
woudn’t have mattered with regard to a diagnosis, but I feel guilt for that. I
suspect it’s because I’m less touchy about seizures due to my having them. Anyway, I phoned my boss that night saying I
was taking Rowan in to the clinic the next morning and waited for morning to
come.
When we woke up I called and set up an appointment for 11:30
at Sanford Children’s- but by 8:15 I knew something was really wrong with our
boy. He was just gone. He was listless and was gazing away for minutes on end.
He was like a little puddle and I drove him right in asking to be seen as soon
as possible.
They got us in front of a doctor right away- during the
appointment, while Rowan sat like a ragdoll in my arms, she asked me whether he
had a pincer grasp-no, whether he could hold on to toys-no. whether he could
sit up-no. stand-no. And like a bolt of lightning, it hit me that our son
couldn’t do any of these things at
9 months old and we should have known…
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| Rowan at the walk in before going to the Hospital 9-19-11 |
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| Rowan admitted and having long clusters of seizures- 9-19-11 |
While talking, he had several seizures and the doctor called
the ambulance over to take us to the hospital. We strapped Rowan’s carseat to
the gurney in the ambulance and the nurses put emla cream on his veins to prep
them for Ivs. I rode along and let Steve know that we were being admitted. He
met us at the hospital.
On Sanford’s 4th floor, they gave Rowan some
siezure medications and set him up for an MRI that afternoon. He had to be
sedated, and I remember hoping and hoping that they wouldn’t find anything or
that they’d just find a tumor or something in his brain that could be
fixed. I was told we’d likely get the
results that evening, but it wasn’t until the next day around noon that the
doctor came in to tell us the findings. I knew by then that something was
wrong. I knew when it took so long to get the results.
The doctor came in and read the MRI findings- which made
very little sense, but clearly indicated his brain was not developed
properly. After his first sentence I
started crying and crying and Steve held my hand. I think he was in shock- and
my heart was breaking.
We had no idea what those results meant in real-world terms.
The paper said ‘there is a significant decrease in sulcation in the frontal
lobe with less in the parietal lobe’. So I googled ‘decreased sulcation in
frontal lobe’. I googled and googled and cried and paced and we just had no
idea what the results actually meant.
We had overlooked the very last sentence of the results,
though. It said ‘this is consistent with
Lissencephaly’. We called the doctor
back in to ask if this was what he had, and the doctor said ‘yes.’ I’m not sure
what we asked next, but I remember him saying ‘this is bad’. And I appreciated
that. I just needed to know.
Then we googled ‘Lissencephaly’.
We searched and searched for something good- for some sort
of positive outcome or hope, but could find none.
We found out through genetic testing that the type of
Lissencephaly Rowan has is called DCX-X Linked, which means it was inherited
through my X chromosome. Any children I have will have a 50% chance of having
this condition.
Steve and I have cried more tears than we could imagine,
we’ve been depressed, we’ve faught, we’ve needed to process in our own ways,
we’ve gone to therapy, and we’ve come together again…
Since Rowan’s diagnosis, he’s been in and out of PICU many
times, in and out of Sanford’s 4
th floor many times, at Mayo many
times, and in the ER.
Rowan’s had countless EEGs, which initally showed him having
3 seizures every 10 seconds. He is actually constantly having seizures, but his
medications help with the larger ones. Right now he doesn’t have any visible
seizures at all, and small eye-twitches are the only way to tell that they’re
still going on under the radar, so to speak.
Our son gets therapy weekly and is on a special
KetogenicDiet which is supposed to help reduce seizures in patients with intractible
epilepsy. He is on 11 different medications including phenobarbetol,
clonazepam, keppra, and others like Carnitor, Taurine, and vitamins.
Rowan has
CVI, and cannot see very well most of the time.
We’re learning how to work with that.
But you know what? He is the happiest, sweetest, lovliest
little boy you’d ever meet. He has good days and bad, but most often he’s a
joyful, gentle little soul with a lot to say! He babbles and has been using
some consonants lately. He loves his little sister like mad- and she’s so
patient with him. She still gets jealous, but she is 3. This is to be expected.
She thinks her brother works at the hospital and enjoys going to the ‘pony
room’.
We know to our cores that our lives have changed for the
better. We are so damn lucky to have both of our children in our lives. Rowan
has changed us and will continue to move us toward greater compassion and
humanity.
So the positive outcome we were looking for has settled
in. We have a wonderful little family
that is suppored and loved by so many. We have a smart, sassy, beautiful
daughter who still thinks I’m her best friend. We’ve got a good partnership
that, with much work, is getting better all the time. And we’ve got Rowan, who
brings us gut-wrenching joy and love every single day. What more could we ask
for?
