I haven't blogged about this before now, but when Evelyn was about 2 months old, we became concerned because we noticed something odd about her little eyes -- in dim light, one pupil dilated more than the other by a couple of millimeters. In bright light or normal lighting, both pupils dilated the same, but we consistently saw a difference in dim light. We weren't concerned about her eyesight because she seemed to see fine, and was already following objects with her eyes so well, but Conan still wanted to get it checked out.
We took her to the pediatrician, Dr. Hawley, who had never noticed it before we pointed it out -- this is probably because every time we go in there, the lights in the patient rooms are super bright. But sure enough, Dr. Hawley turned the lights down and observed the same difference in her two pupils. She referred us to Dr. Chung, a pediatric opthamologist, who did a thorough examination of Evelyn's eyes in January, and he came to the conclusion that she may have a condition called Horner's Syndrome.
Now, I am not very good with medical terminology and understanding how the body works, so Conan could definitely explain this better than I can, but I'll give it a shot. From what I understand, Horner's can be caused by one of two things: 1) it can be congenital (present from birth) and caused by a damaged nerve leading to the eye that causes the pupil to not dilate as well in dim light. A hundred different things could have caused the nerve damage -- trauma during delivery, something or the other that happened while in the womb -- one could just never know.
Or, 2) it can be caused by a rare cancerous tumor in the area of the lungs. This is only the case in Horner's patients who have not had the condition since birth (in other words, it developed after birth).
You can imagine that anytime a doctor throws the word "Cancer" out when talking about your infant, you nearly fall out of your chair, and that day, I nearly did. Even though it was just a possibility at that point, I was terrified.
Dr. Chung wanted us to try very hard to remember if we'd seen the difference in her pupils since birth, and we thought we had, but we just couldn't be sure. We looked back at photos of her up close, and found some as early as 1 month old that showed a difference in her pupils. We felt like it was safe to say that she'd had it since birth, but again, weren't 100% sure.
The other symptom that led Dr. Chung to believe she may have Horner's was that on her eye with the pupil that didn't dilate correctly, the eyelid also drooped a little bit. This drooping of the eyelid is called ptosis, and it is another symptom of Horner's. Although it was oh-so-slight, I would look at her slightly drooping eye constantly after that point and just cry, because I worried that it would get worse over the years and become something that other kids would make fun of when she got older. I pictured her having to have a surgery to lift the lid when she got a little older, and I spent a lot of time wondering what *I* had done wrong when I was pregnant to cause her to have this condition. Was it because I exercised too much? I beat myself up a lot.
In order to try and determine for sure whether Evelyn's condition was related to a cancerous tumor, there were only two things that could be done: 1) she could have an MRI, which would require her to be put under anesthesia, or 2) we could attempt to collect her urine for a 24-hour period using little bags that attached to her tee-tee under her diaper.
For Conan and me, the first option was out of the question. She was just way too young, and it was too much of a risk to put her under for an MRI. I tried very hard to collect her urine for testing, but as you can imagine, that is almost impossible with an infant because if she wasn't trying to squirm her way out of the little bag attached to her, she was also pooping in the collection bag, and contaminating any urine that had been collected!
So, the only other way we can be relatively sure that her condition is not caused by a cancerous tumor is to monitor her general health/development, and monitor her eyes to make sure the condition doesn't worsen. Well, Thursday of this week, we took her back to Dr. Chung who again examined her and made the call that he does not believe she has Horner's at ALL at this point! Over the course of the 3 months since we'd seen him the first time, she's grown so wonderfully, he had no reason to think she had a tumor. Also, her eyesight remained perfect, and the difference in the dilation of her pupils had not changed or worsened. AND, he determined that the ptosis and drooping in the one eyelid had also gone away! I had thought the same thing myself, but it felt so good to have the doctor confirm my observations. I think her one eyelid just drooped when she was younger because some babies' little eyes just don't open wide right away from day one!
Dr. Chung felt like all she had was simply one pupil that dilated more than the other, and it was not related to Horner's as far as he could tell. He said we would continue to monitor her every six months with a thorough eye exam, and we would watch for a condition called heterochromia to develop, which would be a sure sign that it was, in fact, Horner's. Heterochromia means one eye changes to a different color from the other (think Kate Bosworth!) -- so the eye with the damaged nerve would not only have a pupil that dilated differently than the other eye, but it would also develop a different color, so that she might have one blue eye and one green. We don't see signs of this so far, but we'll keep an eye out for it, and of course look for any other signs that her development might be stunted -- but that certainly doesn't look like the case right now, with as big as she is growing!
What a huge, huge, relief -- Praise God for answering our prayers!
Now for my news -- about a month ago, when I put on a bathing suit for the first time in a year to get in the hottub at Conan's parents' house, Conan noticed something strange about my chest (ok, besides the point that I had no chest anymore since I'd finished nursing :-) Right slap between my two breasts, there was a little third breast forming! Ok, that is probably an exaggeration, but sure enough, there was a little lump on my sternum that certainly wasn't there before. It was not tender to the touch when I pressed on it, and it wasn't even particularly lumpy -- it just felt like there was a little pocket of fat or fluid.
On Friday, I went to see Dr. Christen, and he determined that it's a lipoma -- a fatty tumor. (Of course, I shuddered at the word "tumor" until he clarified that it is definitely benign.) I was relieved to find out that it's non-threatening, but it does have to come out eventually. Well, Dr. C said that it can stay in as long as I want it to, but how fast it decides to grow will probably determine when I want to get it taken out. Sometimes they don't grow at all, and sometimes they can grow quickly. Since I won't want to have a third boob for REAL, I will want to make sure I get it out before it becomes too noticeable.
It's super tiny right now, and I'm not sure anyone else would notice it other than Conan and me. But, I think I will wait to have it taken out at least until we return to Alabama this summer, so I can be sure and have some good help overnight with Evelyn in case I can't lift her for a day or two. Doc said I'll have a tiny scar, but hey -- that's better than a cancerous tumor, so I'll take it. Doc says the tumor isn't necessarily related to my pregnancy -- lots of people have lipomas, and some have them all over their bodies! And they don't particularly know why. Even Dr. Christen has one that he showed me on his neck -- it just looks like an extra Adam's Apple, haha!
So -- MUCH relief all the way around this week from both doctors' appointments! I cannot tell you how much I stressed over the idea of my baby having a life-threatening condition (or even just something that would affect her looks/self-esteem later in life) ... and then the idea of something serious happening to me from that lump on my chest, and me not being around to take care of my baby girl.... Thank you, God, for the good reports and the answered prayers that everything is going to be okay with both Evelyn and Mommy.
God is Good!
I know some of you are wondering why I didn't share these two things earlier, or ask for help/prayers -- all I can say is that at the time, I felt like if I put it out there for everyone to know, I was risking it coming true... I don't know if that makes sense, but it's the way I felt, and so I chose to keep our concerns between Conan, me, our immediate families and a few close friends. I didn't feel equipped to talk about it too much because it would only cause me to worry more. I just wanted to know one way or the other what was going on with both Evelyn and me before I shared any news. That's just the way I am, so I hope you will forgive me and help celebrate the good news! :o)
Love,
Ames
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| I thought I'd add a picture that shows the difference in Ev's pupils in dim light... even though she isn't looking at the camera, you can very easily see the difference in her two pupils! |
1 comment:
Scary but you are one brave strong momma. I'm so glad all turned out to be fine.
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