Friday, February 03, 2006

I'm afraid

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.

18 comments:

Karen said...

I'm so sorry you are going through this. I hope this is just a delay that Madelyn is experiencing, and your appointment on Monday will bring peace of mind. You're in my thoughts and prayers

Anonymous said...

I'll pray for you, of course. I wish you didn't have to go through all this, but they can do so much with medicine and surgery. Most of the surgeons I know even admit to praying at some point during surgery :)

Cricket said...

Enough is enough. I'm so sorry this development has come forth. I hope so much that it is merely a bump in the road.

Teendoc said...

All I can offer are prayers of support for you and Madelyn.

tee-tee said...

My jaw is on the floor. I'm speechless. I'm praying so hard for your family. I hope you are wrong. I'm sending love and support to you all.

xxo

Millie said...

Oh Bee. I'm sending all the love and support I've got and holding good thoughts for you and little Madelyn. I hope Monday's appointment brings good news.

Trixie said...

Crap. Mother F$%^*. What can I say? I am so frustrated because none of us here can help you. None of us can make it better. All I know is I have the most amazing visually impaired coworker and he ROCKS! Sure he can't drive but he uses amazing technology and accomplishes feats of dedication at work. There is almost no project that we can't give him. Computers have really made a difference in the workplace. Married for 25 years, 3 healthy children, great job and so much fun to be with...He's a great guy.So when you feel really really depressed - just think about the fact that she is alive and remember that a world of possibilities exist for her. Be brave. Cry a lot more. Then dust off your feet and be a mother who has a lovely little girl.

Anonymous said...

Bee I am so sorry, I m praying this is a temporary condition that will resolve itself-

Catherine

Kellie said...

I am so sorry you are going through all this. Many prayers and thoughts coming your way

Jessica said...

Oh Bee ... there must be a limit to the amount of crap the universe can toss at you ....this is simply enough! I'm praying very had for you and little Madelyn.

cluelesscarolinagirl said...

Oh God Oh God Oh God Oh God I am so sorry. I'm thinking of you.

Anonymous said...

I've been following your blog for a short while. My heart goes out to you and your family for all the struggles you are now enduring. Please take heart in the fact that Madelyn has parents who adore her and wanted her with all of their being. I'm sure this will be of great comfort to Madelyn in the years ahead.

Kath said...

I'm so sorry, Bee. How utterly frightening and distressing this must be. I'm hoping this development is temporary, and that tomorrow's appointment brings you reassurance. Keeping you and little Madelyn in my thoughts.

Anonymous said...

Oh hell, I am so sorry.

I know anecdotal evidence isn't much, but my son was the same way - no spinal surgery, but I thought he was tracking in his early weeks, but by his two-month checkup he wouldn't follow a light, wouldn't blink if I practically poked my finger in his eye ... we too had an opthalmology appointment the same day. And he can see - it's become abundantly clear since then, and their tests established it. Some babies just come on much slower than others in the vision department.

Take care - I'll have Madelyn in my thoughts; I hope that this isn't as bad as it seems

- Sonetka

Summer said...

I wish I could do more for you than just sit here and send out my support and thoughts to you and Madelyn. But I can't, so you and Madelyn will be in my thoughts every day and every night.

wessel said...

Oh Bee, I am so sorry that you are having to deal with this. (And I understand the hating G-d part, for sure.)

I am hoping that if there is a visual impairment, it is temporary and will resolve after the swelling of surgery is completely gone. I'm glad that you got an appt. with the ophthalmologist so quickly, though I'm sure you feel like Monday will never come. Please keep us posted.

Emily said...

Oh Bee....prayers for you and your sweet baby.

G-d's officially on my sh*tlist for life now.

Anonymous said...

Bee, you and Madelyn are in my prayers. I'm so sorry that you have yet another terrifying situation on your plate. How I hope today's appointment brought reassurance.