Camille had her much awaited neurosurgery follow up this afternoon. The good news is that behaviorally, she's still not showing signs of pressure. The sutures in her skull (not stiches, but where the plates connect) aren't very splayed either (which they would be if her head was compensating for extra pressure). The doctor did confirm, though, that her head circumference is growing at a rate faster than we'd like to see. He's not at the point where he wants to say her surgery is failing, because it seems like something is working, but it just doesn't seem like it's working enough. If he had to guess, he thinks she's going to need a shunt - BUT he wants to give her a few weeks to prove him wrong. Because she's not showing signs of pressure and the MRI two weeks ago showed that her brain matter was growing, it doesn't harm her to wait. The scary part is watching her for the signs of pressure (which could wind us up in the ER), but he thinks that's unlikely to happen in the next few weeks. As I've been typing this, his office actually just called to schedule the MRI for 2/16 - so two weeks it is.
I feel like the one word that has characterized Camille's journey, from that 20 week ultrasound until today is "waiting". During my pregnancy, we were waiting for her to be born so we could see how she was going to do. Then she was born and we waited for her to show us signs that she needed surgery. She had the surgery and now we wait for her to tell us if and when she needs another. The waiting doesn't seem to end. But I guess if you think about it, we're always waiting for something. Is there something you're waiting for? An answer to a question, something you've prayed for, an event you're looking forward to...? So if waiting is inevitable, what do we do? I went to the Bible and searched for the word "wait". It's used in many different contexts, but 2 stood out to me. Waiting in hope (Psalm 39:7 - And now, Lord, for what do I wait? My hope is in You) and resting and waiting (Psalm 37:7 - Rest in the Lord and wait patiently for Him).
What matters is what's happening during our waiting. My mom sent me this picture this morning and told me that weeding is good prayer time. I was struck by the symbolism in that idea. I think during this season of waiting and praying, God is using this time for some weeding in me. When I rest in Him and place my hope in His word, He's plucking out the seeds of doubt that have grown over the years in my life. The lies I've let take root that tell me He doesn't really care and "you're on your own." He's weeding out the idea that things have to happen my way for them to be good.
I don't want to have to go through the next two weeks worrying that Camille is going to start having pressure in her head that makes surgery emergent. I don't want her to have to have another surgery. But it's going to be ok. Our God has already brought us so far and given us better outcomes than anyone imagined at first. He's not changing and we can trust Him, so we do.
Pray for us as we wait these two weeks for her MRI and next follow up. Pray that we would not be anxious. Pray that Camille would remain stable and that none of this would negatively affect her development. Thank you for waiting and resting in hope with us!
