Part One: Something Is Wrong

Friends, once again, I am humbled at the outpouring of love and care and prayer for our River and for us.

For those of you who missed initial post and follow up comment, River had an MRI this morning for (what we were hoping would be) the last time, putting a period at the end of all things related to the neural tube defect that was operated on in January. We needed an MRI result “that demonstrates the absence of hydrocephalus, encephalocele, pseudomeningocele, or subdural collection in the postoperative period.”

Our telemed follow-up appointment was scheduled for tomorrow at 9 am. As I was pulling into the driveway, I saw an alert that River had a new test result in his chart…..I was unsure of all that I was reading but I can tell you it did not look good.

Now the neurosurgeon wants to see us in person and specifically asked to see River, too (as opposed to telemed that was scheduled). So now we have that appointment at 10:30 am tomorrow.

Oh what to even say other than if God is for me, who can be against me? I’ve said it before and I’ll say it again:

Who will stand against the Lord?
No one can
No one will
Who will stand against the king?
No one can
No one will

To think God cares about this boy more than I do and that he handpicked me to carry whatever burdens and blessings come with him, that’s all I need to know. I’m here for it.

Please keep the prayers ascending and ask His will be done with my child! 

Part Two: Another Brain Surgery Scheduled

Here is our boy today [picture of River smiling], after an excruciating morning at the hospital after long waits and no lunch and three attempts at getting his blood for next week’s surprise surgery and a long day yesterday of being bloated and gassy after sedation, following fasting and air being pushed down into his stomach by way of a breathing tube he needed when losing oxygen. He never. Stops. Smiling.

So yeah:
River now has another surgery scheduled for next
Friday, June 11th. The last MRI was supposed to be just a formality, as the window of greatest risk for developing hydrocephalus had passed and we were told we were basically in the clear, didn’t even need to do the checks at home anymore (measuring head circumference). All of us including neurosurgeon assumed we were in the clear. As it turns out, he has in fact developed hydrocephalus within the last month—3-5 months after greatest risk period (which is the six weeks following surgery) and he will need a permanent shunt put in….essentially a drainage system moving fluid from brain.

Thankfully, we caught it soon enough that the hydrocephalus was not physically making him sick yet, nor did it have a chance to impact him cognitively.

Also noted in the MRI was a part of his brain (cerebellum – relating to motor function) that doesn’t look quite right…it did not before surgery, either, but we hoped it would form more properly post surgery. As that is not the case, we will be beginning some PT/OT to try to help him with motor skill development.

There was also something noted about one side of his brain not properly sending signals to the other side of his brain….but it is believed that that will sort itself out once the extra fluid is gone.

As you can see, I am lacking a clear and detailed picture of what exactly is happening, which has not typically been the case—-and there is a long list of reasons why that is. We are all doing well despite how dramatically this all changed, but I also don’t have anything poetic to say right now. The fact that I’m not doing worse is God’s hand in my life. I look forward to being in a place where I can share just how much and how specifically I am seeing His hand in all this, despite how unfortunate it may appear right now. God is so good.

I love you all and appreciate the ongoing support more than I can say.

Part Three: Day of Surgery

SURGERY TODAY! Our boy is getting a shunt put in to drain fluid out of brain for the rest of his life.

A close friend of our family’s wrote this to me:

“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.”
Isaiah 42:16

Blind, not known, unfamiliar, darkness, rough….yes I would use all of these words to describe the now but there is LEADING and LIGHT involved and the good Lord has us!!!! Please lift us up for leading and light, team River!! 

Part Four: Surgery Complete and Successful

When Nate and I were waiting for River to get out of surgery, Penn asked my mother-in-law to listen to “Helpless” from Hamilton. She asked him if he knew what the song was about: that sometimes we love someone so much we feel helpless. He said “that’s a perfect song for River!”

Sure is, son. We are helplessly in love with our warrior and we are all heading home from the hospital to all be together.And that is another wrap!!!! Brain surgery #2 complete and successful, all thanks and glory to God for His healing and miraculous hand in River’s body and spirit once again, comfort and strength for Nate and me, and an unfathomable amount of support and encouragement pouring in, lifting us up. A symphony of prayers bringing us peace like a river.