06/15/2026
As we prepare for yet another major milestone in Elaina’s journey, I wanted to take a moment to explain one of her diagnoses that many people have asked about: craniosynostosis.
A baby’s skull is made up of several bones connected by soft seams called sutures. These sutures are supposed to stay open during infancy and early childhood, allowing the skull to expand as the brain grows.
In craniosynostosis, those sutures close too early.
While many people think craniosynostosis is simply a cosmetic issue, it can actually become a growth issue. If the skull can’t expand where it’s supposed to, the brain and skull are forced to grow in other directions.
In Elaina’s case, multiple sutures have fused. Her CT scan showed bilateral coronal craniosynostosis, metopic craniosynostosis, and even partial closure of the sagittal suture. Her soft spot has completely closed, and the growth restriction is concentrated in the front of her skull and face.
Premature babies, especially those who have spent months in intensive care and battled severe chronic lung disease, can sometimes develop thickening of the skull bones and abnormalities in skull growth. Unfortunately, Elaina checked all of those boxes.
Because of this, her craniofacial team has recommended an anterior cranial vault remodeling with fronto-orbital advancement.
In simple terms, surgeons will carefully reshape and reposition the bones in the front of her skull and forehead to create more room for future growth. The goal isn’t to change who she is or how she looks. The goal is to give her growing brain the space it needs and prevent problems down the road.
The surgery itself is a big one. We are expecting about 2 days in the ICU followed by several more days in the hospital. It will be a hard recovery, and seeing her afterward will likely be harder on us than it will be on her.
As scary as it sounds, we trust her team completely. They aren’t recommending this because of appearance. They’re recommending it because they believe it will protect her future.
It’s strange to think that just a year ago we were praying for survival. Now we’re planning surgeries designed to support her growth years into the future.
That’s a gift.
So if you think of our sweet girl over the next couple of months, please keep her in your prayers. She has overcome every obstacle placed in front of her so far, and we’re trusting she’ll do the same with this one. 💕
