Part One

Gather round, friends, gather round!

I really have to tell the story this way, knowing not everyone will want to read long posts, but knowing enough of you will, because a summary won’t do this wild journey justice. 

I’ll start with this picture that I took in a dark surgery waiting room where there was no other person, not even at the check-in desk–no idea why. We had been here before (third time this year), sitting in the same exact chairs every time, but this time it felt different, because no one was certain what exactly was going on; they just knew they had to cut open his head to find out. The neurosurgeon prepared us for several different scenarios.

As I sat there waiting, I snapped a photo of the sky, because its story resonated with me. The clouds here are dark, no doubt, but look at that light shining behind it, so so brightly. I knew we’d find that light in the darkness.

So let me back up. If you would have seen me a week ago, you’d think everything was peachy keen—I would have agreed! This has all been very very recent that our antennas have been up about there being something wrong. 

Just last Thursday, River’s nap was longer than usual. Looking back, that was the first sign of a change in him, but it was really just a series of small things: yawning at odd times, fussing more than usual, waking up unhappy, wanting to be held. But that can be anything, right? Mom over everyone phase of development, teething pains, standard frustration before milestones the way he was before crawling, fighting something perhaps. But at a certain point, we started running out of low-hanging fruit, and that point was Saturday night; like this might be something different. It was hard staying present.

Got the kids down to bed and Nate and I sat down to discuss, where exactly are we right now on all of this? We are new to this journey of having a child with hydrocephalus but I can already tell you the hardest part is straddling this line of just completely normal and chaotic days in a family of five vs. code red serious situations. I told Nate if and when we are in battle mode again, we will be okay…it’s just being hit on a random day in the life like wait, are we going into battle? Hits like a ton of bricks, not to mention how extremely non-formulaic and non-straightforward hydrocephalus is. A shunt is not a permanent solution–it can malfunction at any moment (clog in tube, tube breaking, etc.). It’s this anticipation of battle mode that is gut-wrenching. So we just had to kind of reorient ourselves, like okay, we had a chill few months and now he’s off and really this is what we are gonna have with a kid with hydocephalus….there will be these up and down periods. So we decided, this all might just be normal challenges of a 15-month-old, but let’s just write a message in the portal with our doctors checking in about what we are seeing and go to bed early in case it’s a bad night.

And a bad night it was!! Our typically amazing sleeper was waking every couple hours crying. I woke up after being asleep for only an hour, before his crying episodes even started, feeling completely different from how we told ourselves to feel before bed…playing back the times my head was cocked to the side and thinking yeah, this is crossing over into something else. We are in battle mode. Was just hit with this stomach-churning worry that he is actually suffering now and also this guilt at my frustration with him lately that he’s being so difficult. I immediately recognized I can’t feel guilty and that’s not from the Lord. And that we are doing literally all we can and taking all the steps we feel we need to–not wanting to be too paranoid or overly sensitive but not wanting to miss something potentially big, either. Just that feeling, though, of like wow, he might really be feeling bad and he’s trying to express it.

And then the crying started and battle mode was emphasized. We prayed together, saying we are feeling like we are under attack. We heard an amazing sermon at our church on the devil and how he works just the week prior (this is how God works!!) and we were immediately bolstered by our recollection of it and grasping the truths we knew we needed! ***Seriously ask me for this sermon if you want to hear it—you could have heard a pin drop–will gladly pass on*** We knew Satan had no authority here, and that God had it all. I had texted my mom and sister right then and there and said “I’m wide awake feeling the weight but also calm in spirit and just breathing.” And that was just what it was…..because I had crossed over into battle mode. Suited up with the full armor of God (Ephesians 6:10-18). Past the anticipation of it and just IN IT. 

River woke pretty inconsolable with a fever, and I decided it would be smart to call the neurosurgery department with my updated tidbit since writing to them the night prior. Thankfully the doctor on call was someone who is more of a “better safe than sorry” personality, which I wouldn’t say has been my experience thus far with neurosurgery. I basically was abandoning the checklist I can say in my sleep of when we can be certain it’s a shunt malfunction, in favor of simply a mother’s intuition. To the ER we were headed. 

To be continued!!!

Part Two

The first couple hours at Children’s went just as I imagined it would….no one seemed to think it was his shunt that was at the root of the problems. They checked his eyes with a flashlight, did some shimmies and shakes to check his eye movement range, etc, and all seemed fine. The big question mark was, why the fever, especially with no other cold symptoms present. The thought was, let’s run all the tests and if we ultimately come up with nothing, we can just assume it’s a little viral cold he’s fighting, and we can all go about our day, and that was the most likely (that it’s just a little virus he’s fighting). 

The first step was to check for UTI (you may recall he is at higher risk for this having a severe kidney reflux) via a catheter. The second was to take some blood samples to check for infection in blood….apparently he is at higher risk for infection due to having a foreign object in his body (the shunt). All was clear; they of course had to do the Covid swab as well as testing for RSV and flu. So far, nothing was showing up. Next step was to check out the shunt via MRI and x-ray.. MRI checks the ventricles for fluid levels, and x-ray checks placement of tubing. At this point, we thought it was all going to just be checked boxes to do all these tests, we had suspected the shunt checks would be inevitable going into today…..but NO ONE thought it would turn out to be a shunt malfunction (ie brain surgery again).

Now let me pause. These are all the facts, but you can imagine how it all was going down….every mother knows the wait involved with medical stuff! Being in a little hospital room for hours on end with little River who we already knew wasn’t feeling well for whatever reason, had a fever, was starving (wouldn’t let him eat in case he needed to be put under for surgery), and was being picked and prodded and tested without end. If you would have told me it was about to get way worse, I wouldn’t have believed you! Wouldn’t have wanted to, anyway.

Imagine my surprise when the PA came in to share that the MRI did show expanded ventricles–fluid building again. So much of life is expectations, right? And we were NOT expecting that we ACTUALLY had a shunt revision on the table; we were just doing our due diligence to be assured that’s not the case so we can sleep at night!

Then she said it’s possible that the pressure setting just needs to be adjusted on his shunt, that perhaps it needs to drain at a higher pace (which would be a very simple fix – they can adjust it externally with a magnetic tool). That was both encouraging and discouraging, because one of my biggest hangups with this whole shunt deal is that I feel like the neurosurgery department has painted a clear picture of the possible signs of a shunt revision (well and that is another story now) but I am still totally lost on whether or not there can be problems of lesser urgency such as the pressure being off. So I was hoping it was just a reprogramming that was the next step OBVIOUSLY but that would bring with it a whole host of other questions and concerns for me. 

What came next was probably the worst thing I’ve witnessed thus far with River. To check if the problem was simply a pressure tweak vs. a shunt malfunction, they did a “shunt tap.” Think spinal tap (which River has done twice now!), which is already horrible, and this is worse. They draped a sheet over River’s head with a cutout hole on top, which had him squirming and crying already, and literally punctured the shunt to obtain CSF fluid–WHILE HE WAS AWAKE. Blood everywhere. And they had to do it two times in two separate places because they were getting nothing with the first puncture, which unfortunately spoke volumes, that his shunt was not actually moving fluid through the tube! Here I was with River on my lap, my neck cranked all the way to the side facing away from him because there was risk of infection from puncturing his head right then and there with no prior preparation. Nate’s vantage point in keeping his head still was much worse. 

So that confirmed it: we were heading into surgery.

We sat there waiting for the OR to be ready to take us, and it was all hitting hard what had taken place–how much had changed from what we had thought originally, so quickly. It was now 6 hours of being there and still couldn’t feed him since he was about to be sedated. So much waiting and so much sadness. Nate and I were on opposite sides of the bed looking down at his fearful welled-up eyes, giving him our comforting presence and undying love, which is all we could offer. 

I’ll forever tear up at the video I took of Nate singing “True Colors” to his scared little face. You can actually see River starting to tremble at all the lyrics you’d swear he could understand (“sad eyes”, “discouraged”, “unhappy”), and then you just see his fear being swept up into trust with Nate bringing him back in with his loving eyes and confident demeanor, singing lyrics of River’s true colors shining through all the darkness. And they sure did. It was breathtakingly beautiful. Reminding me now of Peter walking out on the water with Jesus, looking at the winds and starting to sink, but the Lord catching him asking him why he doubted. We are Jesus in this analogy I suppose….making me that much more grateful for a REAL Jesus we can look to who actually has all the power and all the perfection, holding all the answers and all the knowledge.

When it was time for us to make our way to the operation floor, we had to wait an extra half hour there because no one informed us we weren’t supposed to give him water. I had words about that but moved on and focused on River; that’s where my energy belonged. Here is a pic of him right before he got wheeled away. After being wheeled away, the neurosurgeon talked with us about all the different scenarios he could see taking place, which I will come back to at next and final update. Summary: they were about to cut open his head, that was certain, but nothing else was. It could be a one night stay or a two-week stay. We said our farewells to the doctor, putting our trust in his hands, and went to get dinner.

Nate snapped a photo of me in the cafeteria as we waited for surgery to be open. He sent it to my family with this text:

“Sitting in the cafe with my bride now. So grateful for so many things right now, including:

1. My wife’s foresight to call neurosurg this AM

2. Kris and Lou for jumping into action and picking up/watching the boys (and tonight overnight)

3. My parents and sister’s family for hanging with the boys during the Steelers game

4. The Lacroixs for letting my boys join them for trick or treating

5. Our entire familial support network 

6. Having world class pediatric healthcare in our backyard

7. Knowing that God is way bigger than me and is looking out for River, even when things seem weird from my vantage point.

Love you all!”

Always. Be. Grateful. You’ll never regret being grateful.

To be continued…..

Part Three

Thank you for hanging with me!

So many tears shed at last update I was told—happy to report the story has a happy ending (at least to this chapter)!

So, where we left off was Nate and me in the cafeteria and River back in the OR. We made our way back to the dark empty waiting room to wait for the report from the doctor about what it is they found in surgery.

There were two possible scenarios of what the neurosurgeon assumed he would find:

1) There is indeed a problem (and simple fix) with the shunt, which was likely since there was not much CSF available to be extracted from the shunt tap

2) The tube (part of shunt) is working just fine, in which case they’d pull the tube out and leave it out for two weeks, because this means the blockage is actually stemming from a cyst in the belly (that they tried looking for in ultrasound before surgery but too hard to tell).

In this scenario, they’d give him antibiotics for two weeks to clear the cyst, and then reinsert the tube. This would also mean the tube would be draining EXTERNALLY that whole two weeks (and we’d be in hospital the whole time). And then they’d have to go BACK in after two weeks to re-route the tube back to his belly.

The bloodwork to check for infection that we did in the first few hours of being there did not appear to indicate infection, but they needed to go in to see which of these two scenarios were taking place, and even if first case was reality (shunt not working), the plan was to extract more CSF during operation, place it in a culture, and let it develop for 10 days. They were set on giving it a full 10 days before ruling out infection. If something were to develop on culture (indicating infection), even if we had already been discharged, we’d need to go through all that is laid out in scenario 2–coming back in to hospital for the two-week antibiotic cycle with external shunt and then another surgery to put shunt back in correctly.

Never thought I’d be hoping for a shunt malfunction/revision but here we are! But either way, I was just relieved to know that in either case, there was a plan!

We heard a door open and saw the shadow of our doctor–the shadow of the most important person in the world in that moment….had his form memorized in my head in this critical moment.

He told us everything went well, that it was indeed a clog in the shunt which prevented it from draining properly (scar tissue or other bio matter…*barf*), that they replaced the valve and it’s now working properly. He told us as long as the culture did not develop anything within the next 10 days, we are good to go, and in the meantime, we can leave tomorrow if he is recovering well.

And my oh my, does that boy recover well. He bounces back in ways I cannot fathom. It was the very next morning in that hospital room that he was already the River we know and adore with his smiles and sounds and mannerisms that are unique to him. I took a video of him to send to my family, knowing how mind-blowing it would be. It truly is!!!! I’ll never forget this one picture I took of him joyfully playing with a big blue ball at the base of our driveway, taken the very hour we were home the morning after surgery, because it has come to represent his incredible resilience and unstoppable joy. I always say River is made of stuff straight from the heavens. God has blessed us with a boy who doesn’t wear his hard experiences–you would have no idea. He just lights up a room with joy.

An acquaintance from high school/now friend since the River chapter (River has gathered oh so many of us together, in oh so many ways), perceptively pinpointed just what it is:

“I cannot get over everything he has been through and it makes me both sad and angry to think about sometimes but I know you all and River stay optimistic and he keeps smiling so I know we all need to keep smiling for him.”

That is IT right there.

Part Four

Made it past the ten-day mark without culture of CSF growing anything! No additional surgeries or return to Children’s needed; he’s good! New shunt who dis!!

Went to post-op appt with neurosurgery this week with a calmer spirit than usual…no list of questions, no leaving with a fuzzy brain on what exactly might go down and when—it just felt like all the stars aligned for me to take a deep breath and trust I’m getting good care more than I’ve been able to fully do before.

It’s incredible to me how much good can come from bad, the silver linings that really shine. Getting that first shunt revision that we feared so much over with has turned out to feel like a relief in many ways. 

Just feeling like the Lord is banging me over the head in different ways many times over: ONE DAY AT A TIME and that EACH DAY HAS ENOUGH TROUBLE OF ITS OWN. God has a way of taking our prayers that we stumble through, not really knowing what to ask or how to ask it, how to feel….he takes them and He HONORS them and He molds them into something new completely that we couldn’t have thought up ourselves and He delivers them to us in this package that we look at wide-eyed, noticing the packaging reveals a different shape than what we had known before. But nonetheless we take it in and hold it in our hands and as we pull back the layers of wrapping and start really seeing what we are handed, we start to be able to accept and sometimes even understand and appreciate, even if/when it’s hard. Because we know we wouldn’t have it any other way than to hand the keys of our lives to the Creator of life and all things good. It is I who needs to adjust my perspective, it is I who needs to adapt and learn and grow, not God. Blessed to be reminded of this over and over again through the hard times.

Signing off now…….hopefully for a long while.

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.

Part One: Leading Up to Surgery

There is so much to think about and decisions to make when it comes to how we will handle the six-week period of recovery (details forthcoming). I am reminded of the Israelites after fleeing Egypt. They wandered in the desert for 40 years before reaching the Promised Land. During this time, God provided substance for them to eat in the form of manna, a bread-like substance….he rained down this “grain of heaven” for them to gather and eat. They were commanded to go and collect a daily portion of manna each day, enough for that day only, not to try to save any for the morning. Any manna saved up for the next day in disobedience to the Lord would fill up with maggots. Oof, if that doesn’t say it all.

Lord, give us this day our daily bread. Can I get an amen?

Part Two: The Day Of Surgery

I received a text from a good friend who prays for our little River every time she comes across Scripture about rivers. Here is the one she prayed for us on this day of major surgery:

Psalm 105: 41-44
He opened the rock, and the waters flowed out,
so that rivers ran in the dry places.
For he remembered his holy promise
and Abraham his servant.
And he brought forth his people with joy,
and his chosen ones with gladness;
And gave them the lands of the nations,
and they took the labors of the peoples in possession,
That they might keep his statutes
and observe his laws. Praise the Lord.

We are ready, Lord. And all of our prayer warriors are, too. Let’s gooooo!!

Part Three: After Surgery

Huge sigh of relief!!!! We have had this surgery on our radar since March and it’s a bit surreal that it’s now in our rear view mirror. Surgery went as smooth as possible and we left with discharge papers the very next day.

I was recently reading a devotional that stated Pastor Rick Warren’s revelation that he used to think the Christian life was a succession of battles and blessings, whereas now he thinks of life as being on two tracks. “At any given moment in life there are usually blessings, but also battles to face. He gives the example of the huge blessing that came to him through the publication of ‘The Purpose Driven LIfe,’ which became the fastest-selling Christian book of all time. It gave him enormous influence. But at the same time he found out that his wife, Kay, had cancer. On one track of his life there was great blessing; on the other track there was a massive battle to face.”

I see truth in this, and I personally would add that the simultaneous battles alongside the blessings is what makes the blessings feel that much greater and to be cherished. Sometimes, the greater the intensity of the battle feels, the greater the parallel blessings feel, as well. That was true in the days and months following the original hard news that our baby had so many issues that doctors said we might consider terminating the pregnancy. And it was true in the 24 hours following this surgery that occurred on Friday, as well.

The battle was intense: it was an all-consuming minute-to-minute battle trying to figure out how to keep River comfortable. We were told weeks ago that to get to the meningocele, they have to cut through the dura, which they do close after surgery but it’s not water-tight for SIX WEEKS. That meant we were to keep River from straining, which includes “pushing” (they told us to give him laxatives), trying too hard to move around or sit up, and crying fits; otherwise we risk leakage of brain fluid. That first moment he started crying after surgery, I was just cringing at the realization that this recovery was going to be an immense feat. Here he was hooked up to all kinds of wires which made it hard to hold him, and on top of that, he had this massive stretch of stitches (way bigger than we expected to see) all along his neck and back of head, not to mention they “swept” the neck muscles to the side to get to the meningocele (which causes sore muscles). Additionally, he was dealing with pain from the circumcision, gas pains from the anesthesia, and sore/hoarse throat from the breathing tube which affected his willingness to eat. The struggle was physical (he is a BIG BOY), mental, and emotional–pretty comparable in intensity between the three of these. Even between the two of us, we were having trouble meeting all of the needs (including our own) and differentiating between cries/whines, even between basic needs of babies (tired, hungry, etc) vs. surgery aftermath. And to top it all off, the hospital staff came picking and prodding and wanting tests done on him at all the wrong times (like a right time exists, though, right).

In that type of all-consuming battle, the blessings lie in EACH AND EVERY minute of respite. Each and every minute in which he was not crying or whining, each and every minute we were not feeling helpless to comfort our little bubs, each and every minute he was peaceful. Those minutes gave us pause and urged us to just be still and be thankful (theme of the year, am i right?). Perspective changes when stakes are high, when battles are intense. It really sheds light on what I consider hard when I’m not in this kind of moment, reminding me I need to reconsider what “hard” is, and that I need to buck up a bit in the “hard” outside of hospital walls.

But of course, we continually fail in whatever it is we are trying to do, we continue to fail in trying to put into practice what we learned when we were in the trenches. We continually need a Savior! Continually need God’s sovereign hand guiding us and helping us. It’s not a fail that dooms us but a fail that frees us and allows it to be transformed to victory.

One of my besties wrote to me in the thick of it. She sent an image of words stating: “As a mother comforts her child, so will I comfort you” (Isaiah 66:13). She said, “Repeat this back to yourself right now.” It’s what I needed when I was so depleted and insufficient in comforting my own child, to remember I am a child of God and I needed Him to comfort me like I was comforting mine. And unlike myself, His love is perfect and it never runs dry…. “but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life” (John 4:13b-14).

Oh trust me, I had my Psalms 6 moments…..”I am worn out from sobbing. All night I flood my bed with weeping, drenching it with my tears. My vision is blurred by grief; my eyes are worn out because of all my enemies.” Okay, it was never close to this bad but it is for some and it was for David when he wrote this! We aren’t promised a life free of pain. But on this long, hard night, I felt Isaiah 41:10 and I felt it hard, being strengthened by God and upheld with his victorious right hand.

I just want to thank you all for all of the thoughts, prayers, care, encouragement, check-ins, etc. My friend wrote this to me the night before surgery:
“May the symphony of prayers of the warriors rise up to the heavens and God’s grace and mercy flow down upon you all.”
I was struck with the beauty of that image and it stuck with me throughout my entire stay at the hospital. I just felt completely covered in prayer and care and as a result, I felt a peace and calm that transcends all understanding as I awaited the results. There is nothing more powerful than the feeling of being completely surrounded with love and to know there are hundreds of people praying on your behalf.

What a wild ride!!!! And it’s a privilege to have you all with me!!!