27 hours after they picked us up to take Lucy down for her surgery, we were discharged from the hospital. Lucy is so strong and we are so grateful for her resiliency as she recovers from her second major surgery in the first 9 weeks of life.
Words alone fail to explain the complete roller coaster of emotions that we have felt in the last few days. Exhaustion, panic, hope, fear, relief, love, thankfulness, frustration, peace. None of those words tell the whole story. Maybe the only word that comes close is grace. God's grace has sustained us in our weakness. Where we have had no strength, he has been strong for us. Where we have been confused, frustrated, angry, he has been peace for us. We are unworthy of all that God has called us to be and unworthy of the blessing that Lucy has been to our family.
We are certainly not out of the woods yet. 8-10% of shunt repairs see some sort of infection that involves a follow-up procedure and 50% of shunts fail in the first year and need a corrective intervention to be made (that percentage jumps to 60 in the first 3 years). Lucy will have an additional surgery in another 8-9 years to lengthen the drain tube further into her belly.
Pray with us for continued peace. Pray for rest. Pray for keen eyes to watch for warning signs of the infection and possible shunt failures.
Below are a few snapshots of the last few days (phone pictures only in our unpreparedness)...
Just after surgery, still in recovery
So, a lot of people have asked what it looks like...everything is internalized. You can see the shunt protruding above her ear and from behind her ear there is a very small tube that runs along the side of her neck and down the front into her belly cavity where the fluid is then absorbed back into her body.
a few hours after being back in the room we noticed this jar inside a baggie at the end of her bed. "What is this?" Josh said
Oh, her hair...totally didn't cross our minds that we would have any interest in saving this. Technically I guess it was her first hair cut :)
Here we are, ready to go home...24 hours after brain surgery. Is that crazy or what?
We are so blessed!
Rejoice in the Lord always, again I say Rejoice. Amen.