Joy For The Ride: November 2014

Yesterday was a day I had been dreading for awhile. Some of it had to do with my own personal fears. I really, really, really hate going to the eye doctor. I would rather go to the dentist than the eye doctor. Heck, I would rather hang out at a craft fair all day than go to the eye doctor. And not the kind of craft fair where you say "wow that's amazing! I wish I could make that!" but the kind where every booth is packed with the "wow I never realized you could make so many useless, crappy things from an old paper towel roll" kind of "crafts." Those who know me well understand the seriousness of the situation. The problem is, as the mama, I have to be the brave, responsible one. I'm supposed to be the one who stays calm, listens objectively, and speaks, um calmly, with the provider about her care plan. So, yeah, it didn't exactly go down that way.

Here we are on our way to ACH (our home away from home.) Doesn't she look thrilled?

So why does a 6-month old need to see an opthamologist anyway? Here's a little backstory. During our NICU stay, Caroline had about 3 MRI's. (It took 3 tries to finally get a good picture.) The main reasoning behind them was to check her ventriculomegaly to try and determine the cause and severity. The funny thing is the craniosynostsosis, thought to be the cause, didn't show up on the MRI's. This was found later on the CT scan which was done to check the severity of her choanal atresia. Whew! Still with me? Anyway, while the MRI didn't give us any answers regarding the ventriculomegaly, it did seem to show her optic nerves were a little on the small side. So, we have 2 different opthamologists visit us in our NICU room to take a look at the optic nerves. They felt they were "normal" albeit the small side of normal. They tell us to watch for any random eye movements and follow-up in a few months in their clinic. Fast forward 5 months and here we are.

During the past 5 months, we had been watching her eyes and hadn't noticed the random movements the opthamologists had described; however, we noticed since she was in the NICU, that one of her eyes tended to drift occasionally. Since the cranial surgery, we hadn't noticed it as much and actually felt her focus and overall vision had improved greatly. This was another reason for my anxiousness about this appointment. Even though I saw improvements, I still had this gut feeling that something wasn't quite right.

We met with an opthamology tech first who checked Caroline's tracking and seemed very pleased. Then we met with another pleasant lady who checked Caroline's visual acuity. If you're like me, you're thinking "how the heck do you check a baby's vision?" Well, this lady had several large posters. These were mainly blank but each one had a small square with a black and white striped pattern. She would hold them up and see if Caroline's eyes went immediately toward the pattern. I held Caroline while Josh sat behind the poster lady. I couldn't see what Caroline was looking at but just prayed she was doing well and looked at Josh for confirmation. They clapped and cheered for her after each one and Caroline ate it up. She was extremely pleased with Caroline's performance. Then, we finally got to move to a real exam room. Next door we could hear the doctor talking to another family. We weren't meaning to listen, but why are walls in medical offices paper thin? Anyway, we heard words like "eye patches" and "surgery." Josh said "well, at least we aren't dealing with that." Me, being the cynic said "well, hopefully not anyway." Then, the doctor comes in and does a quick exam. She said Caroline's left eye seems to "drift." Now it's our turn to hear "eye patches" and "surgery." At this point, I am literally on the edge of my seat, explaining to the doctor that Caroline has quite a few things on her plate right now and we aren't exactly planning on yet another surgery. I can see the look of realization spread across this doctor's face because it's one I have had with my patients…it's the "ohhh this mama is cuh-razy and I better tread lightly." She backs up a little and looks at Josh. He, being Josh, looks at me, then turns to the doctor and calmly and intelligibly explains we are willing to do what we need to do to give her the best chance but are feeling a little overwhelmed. She then says she needs to dilate her eyes and check for glasses prescription, etc. So, she leaves the room and we wait again. During our wait, I would love to tell you I was praying and just thanking Him for the good news that her acuity is good and all that mess…but I need to be honest. Do you want to know what came out of my mouth as soon as she left the room? Bad words. Bad, bad words. If you read this and say "Wow, Katie has issues and must need prayer" then yes, thank you, I do have issues and need prayer. If you think I'm a terrible person and we can't be friends, then I reckon I can live with that. We were looking forward to having our palate surgery in February and then being done with surgeries for a few years, and now she has to have yet another unplanned surgery? We are still trying to get her adjusted to the helmet and now she has to wear an eye patch? When the doctor came back, I could tell she was trying extra hard to be kind and in return, I tried not to bite her head off. We agreed to try the eye patch therapy- wearing a patch 2 hours a day, alternating eyes each day. In addition, we will be preparing for eye surgery, which will likely take place next spring, after our other surgeries. Though I was feeling pretty down about our visit at this point, the doctor checked and said her optic nerves actually looked great and not small in the slightest. Thank You, God. Another miracle, she doesn't need glasses and actually her overall vision is way above average for a baby her age. As we were leaving, we passed the oncology clinic. I was reminded that no matter what, it could be worse. I know it could be worse, but can I be honest with you? I'm still tired. I look forward to the day when we can see a specialist and hear her say, "there's nothing wrong." So, to sum it up, we had unexpected news, both good and bad, but if the past few months have taught us anything, it's that you always have to expect the unexpected. In true Caroline fashion, she's an overcomer and we know she will overcome this new battle, too.

A trip to the gift shop for something special has become a tradition. We got a Llama Llama book and toy because sometimes, after a long day, you just need a snuggle.

Our sweet Caroline is officially 6 months old. When I state that fact I get 2 different reactions from people… "Wow 6 months already?!" or "Wow, has it only been 6 months?!"

The funny thing is, I feel both of those sentiments simultaneously. In some ways, these months have absolutely dragged. Those moments when she can't breathe because the awful monster they call GERD is attacking and I keep saying to myself, "it will get better after 6 months," yeah, those are the times I plead for the days to pass quickly. Then, we experience those sweet moments when my baby is trying to have a conversation with me. She babbles, coos, and sings and then reaches up and pulls my face closer to make sure I'm listening to her every word. It is in those moments I pray for time to slow down. The 5th month was like that- full of ups and downs. This was the first month of her life that she hasn't had a single surgery. Shouldn't that be a huge victory? Instead, I tend to focus on the negatives. This last month brought out some real ugliness in me. I don't like to admit this truth, but it made me wonder, "what is my life reflecting?"

One afternoon, we were desperately, and unsuccessfully, trying to get Caroline to take a nap. Normal baby stuff. This was one of the first days in the helmet and she was determined not to sleep in the contraption. In an attempt to soothe her, Josh got out her little stuffed lamb that plays music. "Jesus Loves Me" started up and I fixed my eyes on the floor. Josh read my thoughts and said quietly over her whimpering, "He does love her." I believe He does, but sometimes it's easy for me to get so caught up in the difficult moments and forget truth. In that moment, I was choosing to dwell on the bad. The thing is, I want Caroline to believe without a doubt that she is loved, cherished, perfect, worthy, strong, and able to do absolutely anything. How will she believe unless I believe too? Mostly, I don't want to become so fixated on the challenges that they become her identity. I don't want her to be the poster child for special needs and I certainly have no business being the poster-special-needs-mama. I don't want people to see her and think, "oh she is doing great…for her condition" or "she looks so cute…for having those issues." I want them to see Caroline for who she is- a funny, bright, loving, beautiful, formed-in-His-image girl. My hope for Caroline and our whole family is that our lives would not reflect the hardships, but that they would reflect gratitude, joy, and grace.

November is all about thankfulness, so to kick off the month, how about a photo summary of just a few of the things that I am so very thankful for this year?