Our Journey of Ethan’s Head Surgery… Craniosynostosis: How we prepared

Craniosynostosis -- how we prepared;  msalishacarlson.com/

Some days just looking at Ethan’s little head almost brought me to tears. It was always in the back of my mind, but if I let myself start thinking on it, I would dwell on it, and then the “what ifs” would come. 

I had been trying my best to give the situation to God and I thought I’d been doing really well. I kept reminding myself and claiming that no matter what (good or bad), that God is in control and His plan for Ethan is the best. Surgery was our best and only option for him to have a full healthy life.  All we could now do was wait. Surgery was scheduled for Monday, October 8th a month and a half away. We made the announcement about Ethan’s condition and the news of the surgery. Immediately prayers were offered up for us. Friends would call and text and message me on FB asking how I was doing? How is Ethan doing? What can we do to help you?

And I thought I was fine. I thought it would be a piece of cake. The doctor made it sound easy. Our nephew is just fine. We’ll be good. I’m fine. And I really was for awhile. Partially because every time I began to dwell, I would stop and pray. And well, partially because of my denial. But then two weeks before Ethan’s surgery I called the neurologist’s nurse to ask some questions. We had an appointment scheduled with the plastic surgeon/reconstructive surgeon the next day. I just wanted to make sure all our business was taken care of so we wouldn’t have to make another trip downtown. In the course of conversation, she mentioned that Ethan would be swollen and his head bandaged. Call me naïve, but the thought of him this way had never even crossed my mind. I didn’t remember the pics of my nephew this way… just the ones of him being hooked up to all kinds of monitors. Of course swelling and a bandage would be in order. But it started my downward spiral.

The next day at our appointment with the plastic surgeon/reconstructive surgeon, I found out that they were not only going to be cutting out the section of skull that was fused, but would be putting biodegradable plastic plates and screws in Ethan’s head that would dissolve in a year’s time. It just made my stomach hurt to think of such things being done to my baby. But the most remarkable thing happened AFTER the appointment.

Backtrack a bit with me… when we found out Ethan’s skull had fused, even before we met with the neurologist, I had written a prayer request for Ethan on the back of our attendance card at church. Within a few days, one of the church pastors emailed us saying,

“As the pastoral staff, we read and pray for all the prayer requests that come through each week and yours jumped out at me. I am praying for your little one. I have a couple in our small group who had their 3rd, a little girl, and her cranium was fused together. In a month they will go in to have the surgery to repair it. This is a shot in the dark but if you need to talk to someone who knows what you are going through they have said they would be more than willing to connect. I know it can be a trying and anxious time. I will talk to you soon.”

Part of my response back… “I appreciate you sharing about the couple from your small group. We may take you up on the offer to connect with them.”

After we met with the plastic surgeon, we were waiting for the receptionist in the waiting area. The boys were anxious to go and were fidgeting around when something behind me caught my eye. It was a baby girl with the same “zipper” as what Ethan would get. I knew in an instant who these people were even though I had never met them and never seen them before. I told Connor, “Connor, come look at this pretty little girl! This is what Ethan is going to look like in a couple weeks! Isn’t she pretty?” That led to small talk with the couple and then to me saying, “Can I ask where you’re from?” Their answer was the suburb next to ours. Next I asked what church they attend although I already knew the answer… same church as us. “Is this Ruthie?” I asked. The dad was looking at me like “stalker”, but still politely answered “yes”. And then I explained to them that we had a mutual acquaintance and the story went on from there. I had goose bumps all over my body as all this unfolded. The mom, Christine, grabbed up her phone and started showing me pictures of their beautiful little Ruthie after the surgery. She was so swollen & bandaged.  Her little eyes (or what hadn’t swollen shut) looked so miserable. And then Christine told me that day 2 & 3 are the hardest. She shared how Ruthie moaned in pain. She was so lovingly trying to fill me in on what to expect as my boys were becoming even more restless and Connor started throwing a fit. She told me I could look her up on FB and see more pics of Ruthie and then she asked for my number so we could talk more.

At this point, my mind was reeling, my heart was sinking, the fear was growing. We once again planned a fun time exploring downtown Chicago after the appointment with the plastic surgeon which helped to ease some of the immediate “shock” (for lack of better words). And the next morning the boys and I ran to the grocery which kept my mind busy. But then it hit me. The full extent of it just hit me. For the next couple days I didn’t feel joyful or happy, I didn’t feel hopeful, I just felt weighted down, scared and alone. But of course, I wasn’t.
Isaiah 41:10  So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

2 Timothy 1:7 (KJV) For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
That next Monday (one week before Ethan’s surgery), Christine, Ruthie, and Sadie (the middle of their 3 girls) came over. Christine talked me through what to expect, what to pack, she told me about the drainage tube that would be in his head, she talked about how I could possibly continue breastfeeding him even in his sensitive condition with monitors, cords, and all. And she showed me pictures of Ruthie the morning of her surgery and the week to follow. I soaked it all up like a sponge. It was everything I needed to hear and to know. It was the stuff the doctors don’t think to tell you and only a mother’s heart can express.
Needless to say… I am so thankful for the Divine Appointment with Ruthie’s family! It was no accident or coincidence that we were in the same place at the same time. Not only would God use Christine to help prepare me, but also to lift me up later.



Share this with your friends…