Unexpected
There are moments in life when you finally allow yourself to exhale.
After Gianna Grace’s meningocele repair, that’s where we found ourselves. Her surgery had gone beautifully, and we were so grateful. We had settled back into life at home, and for the first time in a long time, it felt like we had turned a corner.
We had finally gotten our sweet girl comfortable in her body. Her acid reflux was under control and the g-tube site well healed. The meningocele had been removed, allowing her to experience the world in ways she couldn’t before. She could comfortably ride in the car, spend time on her tummy, lie on her back, relax in her swing, and simply explore life as a growing baby. Watching her enjoy these little moments brought us so much joy.
So when we went in for what we expected would be a routine follow-up MRI after surgery, we were hopeful. We anticipated hearing that everything looked stable – maybe even improved. Instead, our pediatric neurosurgeon walked into the room with words we weren’t expecting.Gianna’s ventricles had continued to enlarge. She had developed progressive hydrocephalus, and we needed to move forward with another brain surgery within the next week or two.
It was a gut punch.
Not because we doubted God’s goodness.
Not because we questioned His faithfulness.
But because we realized we weren’t in the clear. God wasn’t finished writing Gianna Grace’s story.
Hydrocephalus is a diagnosis that will remain with GG for the rest of her life. Our hope is that one day soon her diagnosis will become “managed hydrocephalus via…” and fill in that blank with whatever treatment the Lord provides. Right now, we have planned surgery for July 14th. What we don’t know is exactly what that surgery will look like.
Our hope is that she will be a candidate for a successful endoscopic third ventriculostomy (ETV). During this procedure, the surgeon creates a small opening in the floor of the third ventricle, allowing the cerebrospinal fluid to flow more normally rather than remaining backed up in her lateral and third ventricles. If that is not possible, the surgeon may need to pivot during surgery and place a VP shunt instead.
While VP shunts are common and have helped countless children live full and healthy lives, they also mean lifelong hardware inside the body, along with the possibility of future revisions and complications. If given the choice, we would love for GG’s own body to be able to manage the fluid naturally through a successful ETV.
But ultimately… The choice isn’t ours. And honestly, that’s been one of the hardest parts.
This surgery has affected me differently than the others because it was unexpected. There was a level of urgency attached to it that caught me off guard.
At the same time, I am incredibly grateful.
Grateful for a team that is diligent enough to catch things early.
Grateful that we have physicians who aren’t settling for “good enough.”
Grateful that Gianna is being watched so closely.
Those things are gifts.
They don’t erase the fear of the unknown, but they remind me that God is continuing to care for her through the people He has placed around us.
Lately, my prayer life has looked very different. I’ve moved beyond the sweet and polished prayers. I’ve found myself offering vulnerable pleadings to my Heavenly Father. The kind of prayers that come from a heart that has run out of the “right” words. The kind of prayers that simply say,
“Lord… help.”
It’s in these moments that I realize how easy it is to forget His faithfulness when life feels chaotic. That’s exactly what the enemy wants.
He wants me to forget who God has proven Himself to be.
He wants me to forget who God says I am.
He wants me to forget how deeply my Father loves my daughter.
He wants fear to divide our home, our marriage, and our minds.
Jesus tells us plainly in John 10:10 that the thief comes only to steal, kill, and destroy.
But he will not take up residence in my mind.
He will not take up residence in my home.
He will not take up residence in my marriage.
And he will not define this situation.
There is a very real spiritual battle taking place, and we are choosing to remain vigilant – fixing our eyes on Christ instead of our circumstances. One of the greatest lessons the Lord has been teaching me in this season is balance. Ecclesiastes reminds us, “There is an occasion for everything, and a time for every activity under heaven.”
There is a time to research.
A time to ask questions.
A time to cry.
A time to rejoice.
A time to sit in uncertainty.
And a time to rest.
This season won’t last forever.
It’s okay to feel afraid.
It’s okay to feel discouraged.
It’s okay to grieve another unexpected turn.
Those feelings are real.
But they are also temporary.
The Lord is not.
He is steady.
He is faithful.
He is the Creator of Gianna Grace.
He has authority over every cell in her body, every surgery, every diagnosis, and every unknown that lies ahead. And while this post has carried a heavier tone, there is still so much to praise God for.
GG is growing beautifully. The G-tube continues to be an incredible gift, allowing her to receive consistent nutrition, stay hydrated, and easily receive the medications she needs.
Her most recent swallow study showed improvement in her silent aspiration. As a result, we’ve moved up to a faster bottle nipple flow, and she’s now able to spend more time breastfeeding – another answered prayer.
Many of her appointments are beginning to spread out because she’s doing so well, even though we still have an incredible team of providers surrounding her. We don’t take that for granted.
We’re also so thankful for the support we receive at home. Our private duty nurse continues to be such a blessing, and GG is now receiving physical and occupational therapy in our home as well. Every extra set of loving hands has been a gift to our family.
And developmentally… She is doing beautifully. She’s cooing. Smiling. Laughing. Bringing both her hands and toys to her mouth. Rolling from her back onto both sides. Bearing weight through her little legs. Tracking faces across the room. Watching the world with wide-eyed curiosity. Experiencing life through her eyes has become one of my greatest joys.
And perhaps what I’m most thankful for is this:
God chose Shawn to be her dad. He chose me to be her mom. What an unbelievable privilege. He has entrusted US with HER. We don’t know exactly what July 14th will bring. We don’t know whether the surgery will end with an ETV, a VP shunt, or another plan entirely. But over the last several months, the Lord has gently taught us something we don’t ever want to forget.
Peace has never come from knowing exactly what He was going to do. Peace has always come from knowing the One who was doing it.
So once again, we walk toward another operating room with open hands, expectant hearts, and complete confidence that no matter what happens, the Author of Gianna Grace’s story is still holding the pen.
Prayer Requests
As always, thank you for continuing to pray for our family. We have seen God’s faithfulness over and over again through your prayers, encouragement, and love.
As we prepare for July 14th, we would be grateful if you would join us in praying specifically:
- That Gianna Grace would know, love, and faithfully serve the Lord from an early age, and that her life would be a testimony of His goodness.
- That the ETV procedure would be successful and provide a lifelong solution for managing her hydrocephalus.
- That she would recover quickly, be comfortable after surgery, and that we’d get our joyful, smiley girl back as soon as possible.
- That the Lord would give Shawn and me wisdom, discernment, and unity as we continue making decisions and advocating for our sweet girl.
Thank you for walking this road with us.
One day at a time, we will continue trusting the One who has been faithful every step of the way.
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