That's an understatement. I'm climbing the walls, I'm so scared and heartbroken.
I think Madelyn is blind.
A couple of days ago after I had given Madelyn a bottle, I tried to get her to smile at me. At nine weeks, she ought to be starting "social smiles." I put my face close to hers and chanted, "Can this baby smile for Mama? Let me see your smile, sweet Maddy!"
Not only didn't she smile, she didn't even seem to see me. I tried the thing I've seen the professionals do, where you pass one finger back and forth across the baby's field of vision, to see if her eyes would track the motion. They didn't. Hmm...
I asked my husband what he thought, and he agreed that it seemed odd. We both thought we remembered Madelyn tracking with her eyes, prior to surgery. He tried using a lighter (of course, I'm like, "Don't set the baby on fire!") in a darkened room to see if Maddy would track that. Again, she didn't seem to see the light at all. But, her pediatrician had said she would likely be delayed in her milestones due to all that she's been through, and very young babies can't see very well. We weren't sure.
So yesterday we saw Madelyn's neurosurgeon. I had called and asked to move Maddy's follow-up appointment earlier because she seemed to be sleeping a lot, and we were hearing more stridor when she cried, making me fear another shunt malfunction. But the CAT scan of Madelyn's head showed improved ventricle size. The neurosurgeon also tapped the shunt to verify that the fluid was flowing appropriately. The fluid was yellow-colored, which isn't a good thing, but the doctor said that since Madelyn doesn't have a fever it's probably not an infection. When blood breaks down, its proteins can cause a yellow color in clear fluid, so the color of the spinal fluid is probably a post-surgical, transitory thing. They'll culture it to make sure.
Of course, I asked the neurosurgeon about Madelyn's vision. She tried the tracking thing as well -- no joy -- and then she did another test, hard to describe: She made her hand into a kind of "stop" position, palm flat and fingers turned up -- just like one of the Supremes backing up Diana Ross! -- and then pushed her hand straight at Madelyn's face very fast, stopping just short of her nose.
Madelyn didn't blink.
I kind of knew then. The neurosurgeon wrinkled up her brow, and muttered, "Madelyn, Madelyn..." in just the same tone I use when I'm worried. Then she asked her nurse practitioner to get us an opthalmology appointment. She was very calm about it, but still.... All last night I tried not to think about it, but it was there, under the surface.
Today I had a few minutes to Google. If you enter "blindness spinal surgery" you are, if you're me anyway, in for a shock. Of the infinitesimaly small number of people who get post-operative blindness, a high proportion of them have had spinal surgery. Also, anemia and a long time on the table are recognized risk factors, both of which Madelyn had. I tried off and on all day to get Madelyn to see me, and I don't think she can. I think she's stone blind.
By mid-day I hadn't heard from the hospital, so I called and applied the thumb-screws, in my nice-but-hysterical-don't-mess-with-me way, and got an opthalmology appointment for Monday at 9:40 a.m. That in itself told me there was a problem. You can't get in to see a doctor that fast anywhere at that hospital, unless someone on the inside called them up and said, "Hey, can you please see this baby who's gone blind since we performed surgery?" The ass-covering has begun.
I feel sick. I'm so afraid. How much more can we take? How much more does this sweet little baby have to suffer? I hate God today. I hate myself. But I love my girl, so much. I know other people have gone through things like this -- I know -- but that doesn't make this agony easier to bear. I can't look into those big brown eyes without sobbing.
Maybe I'm crazy, maybe it's all a mistake and she's just delayed because she's had so many surgeries. But I don't think so. We'll know Monday. Please pray for us.