A Change in Plans

Yesterday and I are not on good terms right now. Yesterday was one of those days that did not follow my planned itinerary. Before you think I have finally made the what you know would be a short trip for me, to Crazy Land, hear me out. See, I knew yesterday was going to be long and inconvenient. It was after all, a big clinic day at ACH. We were going to see our teams that included our wonderful neurosurgeon, craniofacial surgeon, and cleft surgeon and their talented entourage. Whenever you are seeing 3 specialists in one day, you can expect long waits and slight changes to your schedule. I am a planner and generally, I like to have my days adhere to my plans. I expected we would see our neurosurgeon and craniofacial surgeon in the morning and we wouldn't have to be back at ACH until our visit with helmet guy at 1:00…that meant a nice long lunch break which would include a Newk's Splenda tea, a trip to Carter's and maybe even Target if we were really lucky. Well, instead of sipping on tea and shuffling through racks of adorable outfits for Caroline, I was sitting in a room outside of the  CT department listening to my baby scream and my husband sing. Yes, yesterday took some unexpected turns.

Let's go back to the neuro/cranio meeting. Dr. Cai, our neurosurgeon enters the exam room with Dr. Honnebier, our beloved craniofacial surgeon, and their nurses. There are some concerns about Caroline's head growth. Apparently, it is growing a bit too fast. It could be something as minor as genetics. My husband comes from a long line of big heads, like literally, big heads. Dr. Cai turns to his nurse and tells her to schedule a CT scan for that day. Wait, that was not on the itinerary. Here's how the conversation went down…well basically anyway…he doesn't speak much English so a lot of our conversation was head nodding.

Nurse: OK, we will get you set up to head down to CT.
Me: Oh. Like right now?  So this is serious?
Dr. C: Potentially. We may need to perform surgery right away.
Me: Wait. Like brain surgery?
Dr. C: Yes. If it is hydrocephalus, she will need a shunt.

 Then Dr. H starts her examination. Caroline leans into her and hugs her, (how precious is my baby?) resting her head on Dr. H's stomach. She runs her fingers in precise motions along her head and is ready to give her assessment. Remember back in September, Caroline had endoscopic cranial surgery? Well, unfortunately it turns out that wasn't enough. She's going to need the full cranial vault reconstruction (CVR) and a frontal orbital advancement (FOA.) Those are big, medical terms that basically amount to surgeons cutting Caroline's skull ear to ear, removing her forehead, yep, shaping it, and sticking it back. On the bright side, Dr. H will be able to repair Caroline's eye sockets and forehead all in one surgery. The negative- it is an invasive and intensive procedure. It can last up to 10 hours and this time, it will involve an ICU stay and blood transfusions. The Red Cross has been calling me non-stop to come donate anyway, so now at least I have a valid excuse for saving up my blood. Poor Josh AKA Giggles McShaky says, "it's ok, they can take 2 units from me."As you can imagine, at this point in the morning, Josh and I are overwhelmed, frazzled and confused. He and I carry our sweet girl down to CT. We walk mostly in silence, each lost in our own fog of thoughts, fears, and emotions.

The doctor said what? 

Now that I have you up to speed, here we sit waiting on the CT. I sit there listening to my sweet girl cry in fear and my sweet husband sing to her. I say to myself, or perhaps aloud- I don't even know, "this is not how today was supposed to go." Babies aren't supposed to have brain surgery. Babies aren't supposed to have their skulls removed and put back in place. I want to believe that Caroline will fight through and come out on the other side even stronger and more amazing than before. But, if I could just be real and honest with you- I am sick and tired of her having to fight so damn much. I know she's strong and I know God is big, but today, I just want to be sad about yesterday. I want to spill a few tears in anger and sadness and embrace the messiness of it all. This is an awkward, messy gift that can't be shoved into a box, wrapped in pretty paper, tied with a neat bow, and stamped with an inspirational quote. So, I ask you once again, please pray. We are still waiting on results of the CT scan so for right now, we are praying she won't need brain surgery, but ultimately, we do want to know if there is an issue that needs addressing immediately. So to summarize, we are looking at potential brain surgery, skull reconstructive surgery in the next 2-3 months, and palate repair the following month. We were planning a vacation in April and a colossal 1st birthday party in May. Now, those plans are looking a bit iffy. I confessed to my mom earlier today that I feel badly for posting only when something is wrong. I mean, how depressing is that? I feel like that girl from SNL…
Oh, look, a post from Katie…."Here comes Debbie Downer! (whaaaa whaaaa)"
So, I will try to keep you updated on everything, on happy days and sad days, even if it's only a picture or a sentence. Now enough of the sad news. Caroline knew I would be worried this week, so she decided to learn how to clap and wave "hi" and "bye" all in the span of 3 days. If this doesn't make you smile, then you might not have a heart, good luck with that.