The Brain -- Our REAL Eyes!

Yesterday we had an appointment with our Pediatric Ophthalmologist in Kansas City. He is the doctor that did Jocelyn's strabismus surgery in June 2011. Strabismus surgery is a procedure that basically severs the extraocular muscles in an attempt to correct the misalignment of the eyes. Jocelyn's eyes had the tendency to cross both independently and at other times cross together. How can anyone ever see ANYTHING correctly if their eyes keep crossing? So, we decided that even though she might have to have the procedure again later in life (this would be because the brain keeps telling the eyes to do things we don't want them to do), it was worth giving her the chance early, to see as much as she can with the best picture quality as possible.

We haven’t seen our eye doctor in approximately 7 months, but before I tell you about the appointment, for those of you that might not know, let me tell you why Jocelyn needed strabismus surgery.

After Jocelyn was born at 28 weeks gestation, she sustained a Grade IV Intraventricular Hemorrhage (also known as IVH) on both sides of her brain (this is the highest grade of brain bleeds you can have). Bleeding in the brain can be common in preemies related to underdeveloped cellular/brain structures and often the lack of oxygen and blood flow to the brain. The lack of oxygen and blood flow causes the blood vessels in the brain to rupture and therefore bleed.

When Jocelyn's brain began bleeding, she started having seizures which was the first sign she had sustained brain trauma. We were hoping the results would come back that she only had a Grade I or II, as these are the more common grades of bleeds and rarely have additional complications; unfortunately, we did not get so lucky.

Since Jocelyn sustained Grade IV bleeds, this meant that there was not only bleeding inside the brain ventricles but also into the actual brain tissue itself. This of course caused structural damage to the brain leaving pockets, or holes, in the brain where there is no brain tissue which is known as periventricular leukomalacia (PVL) (also known as PVL). Additionally, because of the structural damage and blood clots, Jocelyn’s brain lost its ability to circulate, and absorb, her cerebral spinal fluid (CSF) as originally designed.

The blockage of her CSF only made things worse by causing post-hemorrhage hydrocephalus. Post-hemorrhage hydrocephalus caused Jocelyn to require a whole slew of ventricular taps to remove the excess fluid from her brain ventricles to relieve the ever increasing intracranial pressure. A ventricular tap is when the neurosurgeon inserts a needle (in her case it was a butterfly needle with a 60mL syringe attached) and then the surgeon withdrawals the excess CSF. Trust me when I say, NO PARENT SHOULD EVER HAVE TO EXPERIENCE THIS!

We didn’t have to be present for the ventricular taps, I’m sure the hospital staff would have rather we not have been, but we were there for every single one of them. The surgeon didn’t really like to be “watched” and would at times try to get in & out before we could get there, but there were a few nurses who were exceptional at contacting us the very second they caught word he was coming. You want to see a mama hoof it? I could’ve won some Olympic medals at times. To watch, to cringe, to feel completely helpless and forever have these images embedded into our brains, was something we wish we would’ve never had to experience. We would have never allowed Jocelyn to go through something like this without us right there next to her every step of the way. Some might think a baby might not know the difference but I don’t care, I don’t believe that. She had no choice but to be courageous, and we as her parents, somehow suddenly had to mustard up all the courage we could, and anxiously standby and watch. For me personally, I’ve never known what total helplessness felt like … now I know and wish I didn’t.

Once Jocelyn was of appropriate weight and physically stable, she received a ventriculoperitoneal shunt (or known as VP shunt). As of now, we are on our 3rd VP shunt and it’s been going strong since August 2010. That’s something worth praising!!!

With having two VP shunts fail within two months, I find myself constantly fearing that her current shunt has malfunctioned as well. Signs of shunt malfunction are increased intracranial pressure which manifests as vomiting, changes in eye function such as vision quality &/or eyes turning downward, sleepiness, irritability, seizures and so forth. Some of these symptoms typical kids experience and it’s pretty torturous when every time your child has a vomiting spell, is irritable or lethargic that you fear for their life.

{Here is how the VP Shunt is inserted and relatively what it looks like}

{Jocelyn's current shunt is in her right frontal lobe, wraps around her ear, down to her neck and into her abdomen. She has approximately enough tubing coiled in her abdomen that she could grow 6ft tall.}

Here is a little clip to show you part of what this surgery entails. What you will see below is the insertion of the catheter through the brain tissue and into the brain ventricle. The clear fluid is the excess CSF. The catheter is capped/connected to the tubing so that the CSF will drain in the abdominal subcutaneous tissue.

{Here is a more in-depth depiction of a shunt surgery -- kind of graphic}



Jocelyn’s head trauma has caused a whole array of problems such as spastic quadriplegic cerebral palsy, cerebral vision impairment, difficulty with speech and eating, fine and gross motor delay and so forth.

So what does this mean in regards to Jocelyn’s vision and why we even see an Ophthalmologist? The blood that spilled out of her brain ventricles and into her brain tissue damaged the sensitive vision receptors which lie just along the outside of the brain ventricles. So this means, even though Jocelyn’s eye structures where intact (ie blood vessels, retina, etc) she still couldn’t SEE! We were not at all prepared for this because the eye doctors that saw Jocelyn in the NICU continually told us “her eyes are great … she’s going to see just fine” and this was, and continues to be, not the case. In case you didn’t know, our eyes take a picture and we SEE with our brains. Since Jocelyn’s brain had been damaged, she couldn’t process the picture she was taking.

For the greater part of Jocelyn's first year of life she couldn't see much of anything, but through the guidance of organizations like Infant Child Development and the Children's Center for the Visually Impaired, with the assistance of physicians such as Dr. Lawrence and Dr. Olitsky, and some REALLY hard work, we have been able to tap into a great deal of Jocelyn’s secondary vision pathways that are located throughout the brain. Jocelyn's vision is not perfect and it never will be, however, when we she got strabismus surgery (many physicians do not feel that in the case of brain damage, that this surgery is helpful) her whole world changed.

{Here is an example of strabismus surgery. Jocelyn only required her inner ocular muscles worked on just like in the picture below. Afterwards her eyes were blood red and we were told it feels like you had sandpaper is in the eyes. Pleasant huh? Poor babygirl --- as if she hadn't already been through enough}

{What Jocelyn's eyes sometimes would do BEFORE surgery}

{Jocelyn's eyes AFTER surgery. They were much less red after a few days. That smile is always so heart-warming!}

So anyways, I'm getting WAY LONG WINDED!!!

The exciting thing was that the doctor was extremely pleased that her eyes are continuing to not cross and look "dang near perfectly straight!" I was so excited for good news that I said "heck yes brother...let's celebrate!!!" Then proceeded to give him a high-five! hahaha He smile and chuckled a bit and then entertained my need for a celebratory high-five! Uhm, hello...we celebrate E.V.E.R.Y.T.H.I.N.G...as we think everyone should!!!!

This visit they dilated her eyes and apparently Jocelyn didn’t like that very much. Before our appointment she ate lunch while the eye drops were working and by the middle of the exam she decided a vomiting session was in order. I’ve gotten pretty good at reading her cues and in no time flat I had her out of my lap and vomiting in the sink next to us. Dr. O says “whoa, you are amazing! I’ve never seen anyone move so fast!” I had to laugh and thought to myself “wish I didn’t have to be.” :s I was pleased that both Dr. O and I were able to walk away clean, only a minor abrasion and insta-bruise to my thigh, and the office carpet only received minimal damage. I could live with that!

Sometimes traveling to and from appointments gets extremely tedious, but now that J's eyes and shunt are remaining stable, we don’t have to see him or the neurosurgeon for another year. That is of course unless something changes, but we are not going to entertain those types of thoughts … at least not for today!