The story until now...

I thought I'd fill those of you in who are new to our story what the pieces are that have led to where we are today. This is long and probably too much, but it gives me something to do other than worry. Just skip to the last couple paragraphs if you merely want the latest update.

Most of you know that Zoe was a week overdue, dry inside of me (for how long?), and came via a C-section after 40 hours of induced, unsuccessful labor. Jeff said she looked like she was at the wrong end of a bar fight.



This birth story became a mantra of sorts, a reasonable explanation in our minds in the weeks and months to come for the concerning things that started going wrong with our girl.

First, the difficulty latching. Well, after a week and a half of finger feeding her with a tube and syringe, it was brought to our attention that she likely wasn't eating due to her frenulum being too short rather than due to any birth trauma.



Then there was the torticollis that had her head constantly resting on her right shoulder. We assumed (and still do) that this came from being jammed inside of me (for how long?) without amniotic fluid.



These were two concerning issues, but a frenulum clip and some chiropractic helped them to not be major issues.

Then came the gut punches:

Her 6th visit with the Osteopathic doctor for some craniosacral therapy had him telling me that her eyes were not acting as infants' eyes should--they were bouncing.

Nystagmus, he called it.

On top of that, he was noticing how she would halt all activity for a few seconds while this happened. If she was fussy, she'd stop fussing and stop moving while her eyes bounced briefly; if she was sucking, she'd stop sucking while her eyes bounced. He had me watch--and sure enough, there her eyes went--bounce, bounce, bounce. Stillness, while this happened.

I want your pediatrician to take a look at her as soon as possible, he told me.

I raced her to her doctor's--fortunately I got her to look a Zoe right then--and then a call to Children's Hospital neurology department.

This happened on a Friday--February 22nd, to be exact.

We had given her a homeopathic remedy that morning that was supposed to help her process birth trauma--we were convinced that that was why her eyes started to bounce--she was simply processing the trauma in her system. Right?

We had the weekend to talk ourselves down--we had been told Friday evening by Zoe's doc that neurology was sending us to ophthalmology first, and that our appointment was on Monday.

Jeff went without me--I had to work.

He came home distraught--the chief of ophthalmology, Dr. Weiss at Children's didn't like the paleness of her optic nerve, didn't like how her pupils were sluggish in response to light.

He wanted Zoe to have an MRI to rule out the "big bad uglies" of tumors, structural problems, compressions that would need to be dealt with immediately should they be the culprits.

That was on Monday. They couldn't get her in for an MRI until the following Monday.

Time seemed to stop that week. We were stuck in limbo not knowing if Zoe had a life threatening brain abnormality. The first rallying of the troops happened then--it was amazing experiencing the love juxtaposed with the terror.

On March 3rd--Jeff's birthday--she had her MRI. The results showed a normal structured brain with the only point of note being her "small end of normal sized" optic nerve. But, as our own optometrist told us--there is a wide range of sizes in optic nerves of sighted individuals. So, didn't seem worrisome.

The next step was to have her come in a month later for a vision test.

Now, I was convinced that Zoe could see--at least I was before the eye bouncing incident happened. I remember showing her picture books and being pleased that her eyes would linger for awhile on the pages. She was a book lover already in my mind.

But, after the initial exam at Children's, I wasn't so sure. Sometimes she appeared to see, other times not. I was constantly second guessing what I observed.

Because we weren't in love with going to Children's and seeing so many kids in dire straights, we decided to have our follow up visit with another pediatric physician. He looked at her eyes, told us she didn't see normally--and sent us back to Children's for the Teller vision test she needed.

The Teller test was basically a doctor waving cards with black and white stripes in front of her and seeing if she registered any reaction. Yes, some, but not a lot. She was "on the chart", but way behind the curve for her age.

Could the delay in vision be due to her birth trauma? Possibly, he said. Come back when she's six months old for more extensive vision tests, and we'll see then more of what's going on.

Apparently, they wait until babies are 6 months old as the brain is pretty fully myelinated by then.

So, that was when she was 3.5 months. By then we had started to expand the types of treatments we were seeking for her. As practitioners in the alternative health care field, we were plugged in to a range of treatments available to possibly help her. We were still convinced that everything going on with her had to do with her traumatic birth story.

•Craniosacral
•Chiropractic
•Accupuncture
•Homeopathy
•Specific cranial adjustments to alleviate brain swelling
•Neurodevelopmental movement therapy
•Occupational therapy
•Fish oil
•Herbal elixirs
•Energy work
•Scientifically unproven gadgets that worked on her vibrationally (don't ask--don't worry, it wasn't dangerous--no worse than sitting in front of a computer. Listen, we've been desperate...)

All were tried in order to help our girl.

Somewhere around the beginning of May, we began to notice that her soft spot on the top of the head--her fontanelle-- was bulging. Shit.



I had read that bulging soft spots were a sign of meningitis. But. She didn't have signs of infection, discomfort, etc. that goes along with a bulging fontanelle caused by meningitis.

Another trip to the pediatrician, another call to Children's neurology department. Upon hearing the symptoms, neurology said that they weren't "acutely worried", but that her head growth should be monitored. Too much growth too fast would indicate too much pressure in the skull.

After a few more weeks, we took initiative to get Zoe in to seeing a pediatric neurologist. We were tired of being told to wait and see.

A trip to Dr. Brien Vlcek of Swedish Hospital. He is the only person we've ever met who talks more slowly than our friend Jack Seifert. And, for those of you who know Jack--that's pretty slow (He's obviously a very smart person, observed Jack when we told him this).

First question from Dr. Vlcek: Has she had any vitamin A? No. I wasn't surprised he asked the question--I had read online how vitamin A in large doses can cause babies' fontanelles to swell. Well, based on the fact that she had a normal MRI result in March, we can rule out hydrocephalus, he said. But, let's have her get another MRI to make certain things have not changed.

Another MRI, another normal reading. Meanwhile, we discovered that her fish oil we had been giving her had vitamin A in it. Likely the vitamin A. It could take a couple months for her swelling to go down. Come back in early September for another visit.

Wait and see. Again.

A month later I was looking at Zoe and noticing that her forehead was developing a cone in the center. I took a picture of her head and compared it with an earlier shot. Sure enough, her forehead was starting to look distended. (see the pictures below--earlier shot on top, later shot on the bottom. Notice the change in forehead shape)





And, on top of that, it really seemed that her fontanelle was bulging more over time, not less:



Calls to the neurologist to try and get in sooner led to a response of We're not worried, see you in September.

Then came her big vision tests in early August. Another Teller test made it seem that her vision was actually worse. Then, they put electrodes on her head over the visual cortex and had her sit in front of an ancient computer screen which flashed stripes and checkers. The electrodes were in place to monitor brain reaction to the images.

The reactions were "crude" the doctor said.

Examination of the eyes showed a very pale optic nerve and sluggish reaction to light. Diagnosis: optic nerve atrophy. She's an enigma, the chief ophthalmologist said. I don't understand what could have caused this--maybe the low amniotic fluid, He opined.

Oh lord--why didn't I notice I was leaking?

He was very concerned about the pressure in her skull, so we used that as leverage to get Zoe into the neurologist sooner than early September.

Upon seeing Zoe, the neurologist said that it was clear that the swelling wasn't due to vitamin A toxicity. I think her cranial sutures might be fused--I'm sending you to the cranial facial department at Children's.

And that's when we ended up in Dr. Cunningham's lap.

He listened to our well rehearsed birth trauma story.

He said, Listen--I hear you telling this story as though you believe that this is what caused your baby to have these problems. I want you to know that you can stop believing that. What happened to your baby happened when she was no bigger than a peanut. You can stop blaming yourselves.

And so. Here we are.

This is a strange place to be in. The proverbial calm before the massive storm that's to come.

Her blood test that will confirm or change the diagnosis won't be ready for a couple of weeks. They are working up the genome--or something of that sort. I'm not sure of the phrasing, but the word "genome" was in there.

Seattle Cancer Care Alliance called to set up our first appointment and verify information. But--she doesn't have cancer...

I reread this post and feel not all that pleased with it. It's a lot of info about the process of our trauma--and no real telling of the joys within it all. Zoe has been a blessing of a baby. An incredible soul who is called Sweet by all who meet her. She babbles, kicks, loves to grab my nose, loves to laugh and smile and sing in her own language. She's headstrong, opinionated and definitely my daughter. Oh, my heart hurts just thinking about how much I love her.

Oh God, this sucks so bad. Just totally sucks.

So many of you are telling us to let you know what we need in the way of help. Thank you, thank you. And--what would be really helpful is for you to let us know how you can or want to help. That way we don't have to try to think of anything. Some of you already have--writing us bullet points of specific ways we can use you. Great! we love it. Some of you have already stopped by with food.

This sucks--and, we are so blessed.

Yin Yang.