Eleanor's Eye: Horner's Syndrome

**Please note that I am by no means a medical expert. I am using terminology that I understand, and that you will probably understand as well, instead of all of the confusing medical terms. Also, please note that I ramble about every little detail. Sorry.

Read here to learn about Horner's Syndrome.

When Eleanor was about 2 or 3 months old, I noticed that her pupils were not the same size. Especially in dim lighting. I also noticed that her left iris was just slightly lighter in color than the right. The right was more brown, and the left was a little greener. My initial thought was that her eyes were still changing and developing, and it was nothing to be worried about. (Go ahead, go back and look at all of her pictures. You will notice it now that I've pointed it out. It's actually quite obvious in some pictures. And if I ever catch anyone making fun of her for it, I will punch them in the face.)

I mentioned it in passing to her doctor, who we go to church with. Her response was something like "it's not common, and it's not rare, but it's almost rare. It doesn't mean that something is wrong, but it COULD mean that something is wrong." And to keep observing any changes.

I went home and turned to Google for some answers. Then I got a little scared. Seeing things like "disease" and "tumor" and "stroke" pop up was not very comforting. I read something that said if you take a picture of them in lighting that causes red eye, and the pupil shows up white instead of red, then that is a sign that they have this certain disease. I didn't do it for a while because I was terrified of what I would see. Spencer finally convinced me to do it, but then I had a hard time taking a picture with red eye since my camera is made to prevent it. As a photographer, I never thought I would take a picture TRYING to get red eyes! I pulled out my old, dusty point and shoot camera, turned the lights down low, the flash on, and took some pictures. And thank the good heavens, I saw red pupils!

I voiced my concern to her doctor about what could be wrong, and she went ahead and got me set up with a pediatric ophthalmologist. Our pediatrician has been very optimistic this whole time. She actually didn't think it was Horner's at first, because she didn't see any ptosis(droopy eye). And she definitely never thought she had a tumor because she has been developing perfectly fine - physically and mentally.

We went to the eye appointment, hoping to walk away feeling better about the situation. We just wanted to rule out that it was anything to worry about. However, the eye doctor said she did think it was Horner's due to the pupil differences, as well as the iris color differences. She also said there was about 1mm of ptosis(which is kind of funny, because all along, I thought it was her right eye that was affected, since to me, it was droopier. but apparently the left eye is the "droopy" one.) She immediately brought up the fact that a tumor was a very real possibility, but 90% of the time they are benign. She wanted to rule out that it was anything serious, so she ordered an MRI to scan her head, chest, and neck, and also a urine test to basically test for cancer. Wow. My daughter was tested for cancer. Obviously we left that appointment a little more weary than we anticipated.

I have to be honest. I don't know if it's mother's instinct, or a little gift from God, but all along, I have had the greatest sense of peace about the whole situation. I didn't know that she wouldn't have a tumor. But I DID know, with so much certainty, that everything was going to be fine. I knew the whole process could be scary, but the end result would be a healthy little girl.

The urine test required us to collect her urine for 24 hours. Are you kidding? Do you know how hard it is to collect urine from a 5 month baby GIRL? A boy would be so much easier in this situation. It was so frustrating. Every time we'd open her diaper with such high hopes, but it would almost always be a bag that had unstuck itself with nothing inside. Luckily there were 2 different collections that we turned in, and somehow, it was enough for their test. One of those collections had poop ALL over the outside of the bag. Spencer took care of that one. What a guy.
 
We told the Imaging Department that we were leaving town for about a month, and we were hoping to get it done beforehand. Apparently the sedation team at the hospital is super busy, but they scheduled us in on Spencer's birthday, May 2. Then we played the waiting game.

At one point I spoke with our pediatrician on the phone, and she mentioned that the urine tests came back negative. That was a relief! So at that point, we just needed to rule out any benign tumors.

Spencer started getting pretty caught up in worst case scenarios. Before we got the urine tests back, he would talk about Eleanor being in a cancer center, and going right from work to visit her every day. And her being bald. He was legitimately worried about her dying while being sedated for the MRI. He came home one day and told me he googled "infant death grief" at work, and had to leave his computer a few times so nobody would see him crying. Because really, who wants to see a manly man with a mustache cry at work? I told him to stop talking to me about it because I had felt so good about the situation, and he was only making me question the comforting feeling I had. It was clear that I would have to be the strong one in this situation.

We were given very strict rules for what she was allowed to eat on the day of the MRI. She was scheduled to be sedated at 11:30am. She was allowed rice cereal up until 5am, breast milk up until 7am, and water or clear juice up until 9am. I woke up at 4:30, made some rice cereal, woke her up, and tried to shove a few bites down her mouth. She kept looking at me like "what are you DOING!? I'm trying to SLEEP!". She choked down every bite and then tried to fall back asleep before I stuffed the spoon back in again. I eventually gave up and went back to sleep myself.

Her last nursing session was at 6:45am. Since she doesn't like bottles, that was the last time she ate until about 2:00pm.

Spencer gave her a blessing before we left. It was sweet and simple. And part of it was something like "bless that your hunger will be postponed...". And it was!

Obviously we were worried about how she would be with not being able to eat. I got her down for a nap that morning, then we left the house to keep her distracted. She ended up taking another nap in the car. We got to the hospital, checked in, then had to wait in the lobby for about 45 minutes. Spencer held her the whole time so she wouldn't be tempted to nurse with me. This little girl was as happy as could be the entire time. You would  have never guessed she was probably starving.

We were finally called to the sedation room. The took her vitals, hooked her up to a bunch of different wires, and explained everything they were doing and would be doing. They gassed her to fall asleep first before they put the IV in. Spencer helped to hold her down, but the second she started crying, I had to walk away. I couldn't watch. They made Spencer walk out when they gave her the IV. When they wheeled her by me, it was so weird to see her like that. With a little oxygen mask on her face and her eyes taped shut(to prevent them from drying out or become irritated during the scan). Oh, it was so hard to see. She did not look the same as when I go in to peek at her at night. It was a different kind of sleep, and I didn't like it.

We handed her over to the MRI staff, and Spencer and I went to the cafeteria for lunch. The food was disgusting, but luckily I brought along some birthday brownies(he prefers brownies over cake).

After lunch we waited in the lobby outside the imaging section. When they were done, we walked back with them to pediatric recovery. They said everything went great.

Only one parent is allowed in recovery. So I stayed with her. It took about 15-20 minutes for her to wake up, although it seemed like so much longer. She smiled when she first heard my voice, but then she quickly got pretty upset. They told me to try to feed her right away, but the poor girl was just too tired to latch on. She could, however, BITE. Darn those two cute little teeth. She kept throwing her head and body all over the place. Her eyes were still extremely tired and she still wasn't all quite there. It was so sad to see. At one point I saw blood on her face, and looked down to see that she had pulled out the IV in her hand, and blood was getting everywhere.

I kept trying to feed her, and she kept trying, but then she would get so frustrated. And I was getting frustrated. And the nurse was getting frustrated(who was a new employee. What is with our luck in hospitals and new empoyees!!??) The poor girl was so hungry, but couldn't eat! I don't blame her! It took me back to the 2nd (or 3rd) night of her life when she acted in a similar way. So I did what I did back then, bounced her, and calmed her down, and low and behold, she started eating. Amazing how I was grateful for that frustrating experience in the beginning of her life. I knew she was starting to come back to herself when the nurses started talking, and she threw her head in their direction to look at them. And when she started reaching for her toes to play with.

Once she was able to get some food in her stomach, they discharged us. We went and got Spencer, and made our way home. She smiled and blew her tongue at all the people we passed in the hallway. I was so happy to see her getting back to normal.

By the time we got home, I felt she was about 90% back to her normal self. I was so relieved to be over with the MRI, but now we had to play the waiting game again.

I texted our doctor to tell her the test was finished, and she told me she was going to see if her office had the results. Unfortunately she never got them that night, so we had to wait unit the morning.

That night I found two blogs that put me at ease. They both had babies with Horner's, and both of them had normal MRI scans. I went to bed feeling pretty good.

Got the call from the eye doctor the next morning. She said the scans were normal, and the urine tests were negative, so we were in the clear!!! We have a follow up appointment in 6 months just to check on her vision. So we don't know what caused the Horner's. It could be how she was positioned in the womb, or something that happened at birth. But it is only a cosmetic issue now. We could not be more grateful.

This experience has changed us. Even though she is healthy and normal, it took us through so many emotions. I couldn't help but think of the parents that don't get the good news that we received. I just can't imagine. Having a child changes you. They become your entire world. And just the thought of something possibly happening to them can turn you upside down.

I wanted to write all the details because a) I didn't want to forget, and b)there really isn't a lot of info online about babies with Horner's, and I was so grateful for the two blogs that I did find, and wanted to put our story out there for those who are going through the same thing.

Photos of the day: