Thursday, June 14, 2012

How we found out.

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…
Rowan at the walk in before going to the Hospital 9-19-11
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 4th 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?