Wednesday, November 4, 2009

What you don't know can hurt you

We're starting to develop a bit of a love-hate relationship with the medical profession. Yes, they did save our son's life, and they gave us an opportunity to meet our daughter, for which we are eternally grateful. However, it seems like we can't set foot in any kind of medical facility without learning at least one disconcerting new fact about Bryce. Thus far, most of his challenges are not life threatening, and we've met many amongst our friends and family who've shared comforting stories about overcoming similar challenges, but that's not the point. It's not the hernias, or the reflux, or the cleft palate, or his potential sensory shortcomings or any of the other stuff that kills me: it's the fact that he has to overcome all of them, and that the only reasonable expectation is that the list will continue to grow. It's like death by a thousand little disappointments.

So, on to the new facts of today. Bryce had his appointment with the pediatric opthamologist this morning, and the news gradually progressed from encouragingly good to uncomfortable-feeling-in-the-pit-of-my-stomach scary. First, they checked his vision using a number of simple tests. As expected, he had no trouble tracking toys that light up, but I was pleasantly surprised when he repeatedly followed a striped square embedded within a larger, solid rectangle. This was the first time I've witnessed visual behavior from Bryce that convinced me that he can see more than just light; those little eyes actually work!

Next, they did a test to determine how good his visual acuity is. The doctor said that Bryce is quite near-sighted, and that if he was going to school they would definitely fit him with glasses. However, his vision is good enough that it won't hamper his development as an infant, so no baby glasses for this kid!

It was at this point that the news started taking a turn for the worse. The opthamologist explained to us that Bryce's optic nerves are unusually pale. This could mean that the capillaries (small blood vessels) in the optic nerve haven't fully developed yet, or it could mean that the optic nerve was damaged (or didn't develop correctly) due to his early arrival. Since the optic nerve is essentially the signal wire between the eyes and the brain, you can imagine how a "frayed" optic nerve could cause all kinds of problems.

Finally, we get to the real scary stuff. Our readers may have noticed that Bryce holds his eyes wide open, almost as if he's just been startled, in many of the pictures. What you may not know, however, is that this isn't just a consequence of the camera flash; his eyes are usually like that when he's awake. The opthamologist noticed this behavior, and casually dropped the morning's bombshell: perpetually wide eyes is often a sign of increased intracranial pressure (i.e., brain swelling). As many of you know, we were deeply worried about this due to Bryce's intraventricular hemorrhage; however, his hemorrhage resolved very quickly, and all of his subsequent ultrasounds looked great. Nevertheless, the doctor recommended that we schedule another ultrasound of the ventricles to look for swelling as soon as possible. Never a dull moment in the life of a micro-preemie (nor his emotionally-battered parents).

Thankfully, everyone is still healthy, and I'm busy manufacturing H1N1 antibodies after (finally) scoring a vaccine at the U. I know it's just the placebo effect, but I already feel healthier. :) We managed to get Logan scheduled for vaccination too, but we're still fighting to get Christie classified as "high risk." Though it's barely begun, I've never been so eager for a "season" (cold & flu) to be over with.

Print this post

1 comment:

  1. Hang tough, Jason! Bryce is a winner. He will surprise you in the long run.
    Steve was not supposed to be anything but a body living in a vegetative state. Doctors said he would never be able to follow command, never know right from wrong and would not be able to go to therapy. After reading his current journal of the past three months, I am amazed at his skills & maturity. Steve says, "Bryce is a Sonnek, he will be fine!" His pics are so adorable.
    Love and prayers,
    Grandma & Grandpa