Craniosynostosis, irrational fears, and a confession

Eli’s surgery is scheduled for 11:15am this Friday. I do not want to do this. I do not want to say good bye and hand my precious son to strangers. Again. And no, it is not easier because we’ve done this before. In fact, this time is harder. A lot harder. When Eli had heart surgery he was a sick baby. He didn’t eat. He struggled to breathe. We knew surgery was our only hope of fixing him. We were ready to have a healthy baby. This time, although the surgery is necessary, we do not see the detrimental effects of his craniosynostosis – yet. Besides his misshapen head (which most people don’t even notice until I point it out because it’s in the back), he shows no outward signs of being “sick”. That’s the thing about craniosynostosis. The surgery is a preventative surgery. If left untreated, the brain will stop growing because it will have nowhere to go. Obviously, if that were to happen, it would be devastating for the child developmentally. But handing our outwardly “well” baby over for a majorly invasive surgery is causing extreme anxiety for this mama. Not to mention the fact that his type of craniosynostosis, lambdoid, is extremely rare. The surgeons have done hundreds of CVR (Cranial Vault Reconstruction) operations this year alone. But when I asked how many lambdoid surgeries they’ve done this year, the reply was alarming. Eli will be their fourth. Yep. They’ve done this surgery three other times this year. That puts me at ease. Not really. Ugh. Eli is doing great. He’s hitting milestones and making strides daily. He laughs and plays and has the sweetest little personality. What if something goes catastrophically wrong and that all goes away??? I know I shouldn’t think like that but it’s hard not to. I want to stay positive but I just can’t. I. Am. Terrified.

I have a confession to make. I am afraid God is going to punish me because I once wasn’t sure I wanted Eli. When I was pregnant and we first found out our baby had Down syndrome I thought horrible thoughts. I actually wished I would have a miscarriage. Before you lambaste me and tell me how horrible I am, please understand I was scared. I had no idea what having a baby with Down syndrome would mean for my family. After I found Acceptance I regretted every negative thought I once had. I prayed for forgiveness. I lived fearfully throughout my pregnancy that I would actually miscarry. I begged God not to take my baby. Once Eli successfully made it through open heart surgery I felt relieved. I felt unburdened. And then he was diagnosed with craniosynostosis and we were told he would once again have to undergo surgery. And then the fear came back. All of those negative feelings of regret washed over me like a tidal wave. I was convinced this was all my fault. Since then, I have prayed constantly. The rational side of me does have faith that God loves me and He loves Eli and knows how much I need him. The irrational side of me is still just that, irrational.

I love my children more than anything in this world. I thank God every second of every day for choosing me as their mommy. I am forever grateful that I gained clarity and compassion on that beach back in June 2012. I felt The Lord’s presence that day and I felt it again while Eli underwent heart surgery. I pray for the same peace on Friday.

Our Eli might look different after surgery. His head shape will change. The alignment of his eyes and/or ears may change. He will have a jagged scar from ear to ear over his head. But Eli will still be Eli. He will still have a thousand watt smile and he will continue to steal the hearts of many. He is fearfully and wonderfully made. He is a child of God and he is loved more than any words could begin to describe.

Thank you all so much for your thoughts and prayers. It means so much to Chuck and I that so many people truly care about Eli and our family.

I will update this blog once we are on the “other side”. Surgery is estimated to take 5-6 hours. Eli will be away from us for about 8 hours. I will be counting down the minutes. I will miss this face. 20131003-022536.jpg

An Eli update

I haven’t fallen off the face of the earth. I’m still here! I took a little break from blogging to just enjoy life and my little family. After Eli’s most recent diagnosis, some pretty raw emotions took over. Disappointment, sadness, disbelief. I didn’t want to burden this blog and my “readers”. I needed some time to decompress. I took a wonderful vacation to California with my mom and the boys. Just the four of us road tripping. It was a good time! Eli met lots of family that he hadn’t met before. I think it’s safe to say they all fell in love with him (who doesn’t?). I’ll post some adorably cute pics of that trip, 4th of July, and other summer stuff soon!

Today we had a meeting with the craniofacial team at Children’s. We are very confident Eli will be in the best hands for his craniosynostosis surgery. The official name of the surgery is Cranial Vault Reconstruction (CVR). Warning: A somewhat graphic description to follow
They will cut his skull in a zig zag pattern from ear to ear (so when the hair grows back the scar becomes less noticeable). The skull bone is then cut to release the fused suture. The back of his skull (where the lambdoid suture is) will be removed and the plastic surgeon will re-shape that piece making his head round (it is currently a rhombus shape). The skull will then be stabilized with dissolvable plates and screws.The neurosurgeon will assist and make sure the cuts near the brain are done safely and that the dura (protectant layer of the brain) stays intact.

Jokingly I think of Eli to be a little like Humpty Dumpty – except he will be put back together again. Seriously though, we’re having a tough time knowing this surgery is imminent. People say to us all the time, This should be nothing compared to heart surgery – actually, to us it feels worse. He was a very sick child when he went in for his heart repair. We were looking forward to having a healthy infant who was ready to thrive. Now, Eli is a happy baby who plays and engages with us. He shows no outward signs of discomfort. He is developmentally on track (mostly). But, if he doesn’t have the surgery all of that will change.

The surgery scheduler should call with the surgery date by the end of the week. It most likely won’t be until September or October. Please God, I do not want to celebrate his 1st birthday in the hospital. He deserves better than that.

So now we wait. In the meantime, he keeps on loving and laughing and living life to the fullest. I wish the same for all of you.

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One in a million

Rocky Balboa once said, “Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place, and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward.”

That quote sums up our lives right now. We’ve taken another hit. Eli will need another serious surgery. Last Friday, a CT scan confirmed that he has something called
Craniosynostosis. You’re probably asking, What in the heck is Craniosynostosis? Craniosynostosis (pronounced crane-eo-sin-os-TOW-sis) is when one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly.
Sutures are located between the bone plates in a baby’s skull. They allow the baby’s head to come through the birth canal. After birth, the sutures let the skull get bigger to make room for brain growth.
After infancy, the sutures slowly begin to grow together to fully connect the skull bones. The skull bones begin to grow together when children are about 2 or 3 years old, but the process is not fully complete until adulthood.
A baby can have one or more fused sutures. When any of the sutures grow together early, the baby’s head develops a specific shape, depending on where the fusion occurs. You can usually see an unusual shape to a baby’s head at birth or shortly after. When several sutures close early, the baby’s head can’t expand to hold the growing brain. This can cause increased pressure in the skull that may hurt brain development. (www.SeattleChildrens.org)

There are different types of Craniosynostosis. Eli has Lambdoid Craniosynostosis. It is quite rare and occurs in only 2-4% of patients with craniosynostosis (1 in 300,000). The lambdoid suture is paired and located along the back of the head and it may fuse prematurely on one side or on both sides. Typically, fusion will cause the skull to develop a trapezoid shape, indicating restricted growth at the fused suture and compensatory growth changes surrounding the suture. (www.CraniofacialMD.com)

You read that right: 1 in 300,000. Pair that with Down syndrome, VSD (heart defect), and Infantile Spasms and our kiddo is 1 in a million. But, we already knew that.

Don’t worry, we aren’t giving up the fight – not even close. We take the hits and keep on moving. Some days we go backwards instead of forward but I refuse to let life’s hardships win. It could always be worse, I do know that.

Next up, we’ll have a meeting with the team at Seattle Children’s. The medical team will consist of a craniofacial plastic surgeon, a pediatric neurosurgeon, a pediatrician, a nurse and a social worker (for support and assistance). We will most likely schedule his surgery at that appointment (they would like to have the surgery done between 9-12 months old). I have been assured by other doctors in the community that Seattle Children’s has the best Craniofacial Department in the nation. At least I know Eli will be in good hands when we once again have to hand him over for surgery. Ugh. Just writing that gave me anxiety.

Please keep Eli in your prayers. Our warrior faces yet another challenge but with the strength of prayer, community, and love I am confident he will prove victorious once again. ❤

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