Eliana Update and Reflections
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Eliana Rivera
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Eliana Rivera
Prayer Requests for Tonight
1. Rest, vomiting, and nutrition
Our biggest prayer for tonight is very simple: that Eliana would have a deeply restful night and that the vomiting would stop.
Her continuous feeds are being paused overnight from 9:00 p.m. to 5:00 a.m., and we are hopeful that giving her stomach that break will help. Please pray that her body receives well what she has already taken in through her feeds and, now, through some actual food.
This matters for far more than just tonight. We are realizing more and more that the night is deeply connected to the day. PT, OT, speech therapy, neuropsychology, simply getting out of bed and being awake and engaged, all of that requires an enormous amount of energy from a little body that has been absolutely ravaged by this disease and everything required to keep her alive.
So we are praying for a virtuous cycle to begin taking hold: good sleep, better energy, more engagement in therapy, more strength, better nutrition, more healing, and then another good night of rest.
2. Her kidneys
Please continue praying for the complete restoration of her native kidney function.
Her urine production has been really encouraging. What is still lagging behind is filtration. Her BUN and creatinine increased on the most recent labs, so we are specifically praying that those stabilize and begin coming down as her kidneys increasingly take back the filtration work they were created to do.
Even with those elevated numbers, most of her electrolytes remained stable. Her sodium was an issue, but that appears to have been related in part to all of the vomiting and some dehydration, and they have supplemented her with IV fluids.
Most importantly, nephrology did not see a reason to rush her back into dialysis.
Eliana has not had another dialysis treatment since leaving the ICU.
That is better than what we originally expected, and we are incredibly thankful for it. We praise God for every additional day her body is able to go without needing that machine.
They are currently checking her labs roughly every 24 hours, so please pray specifically for the next set. We want to see evidence that things are moving in the right direction, not simply numbers that are acceptable enough to avoid dialysis, but kidneys that are progressively recovering and functioning the way God created them to function.
3. Swallowing, eating, hydration, and her voice
Today brought something we are genuinely thankful for.
To be very transparent, I went into Eliana’s swallow study with very little confidence. Deep down, I really thought the whole thing was going to be a complete failure.
I was praying that it wouldn’t be.
And, if I’m being completely truthful, I was also praying against my own doubt while I was praying for her.
That’s kind of where my mind and heart are right now.
But she did not fail.
She still cannot safely take the thinner consistencies right now. They move too quickly, and some can move toward or into her airway. We wish that weren’t true. It is concerning, particularly because hydration remains so important, and it keeps open the possibility that she could eventually go home with a feeding tube.
But she was able to safely handle Level 3 consistencies.
That is a big change from what we knew 24 hours ago.
She can now begin eating certain foods and can take liquids when they are appropriately thickened. And because the renal formulas and continuous feeds have been so difficult for her body to tolerate, causing vomiting, discomfort, disrupted sleep, hydration issues, and downstream electrolyte problems, being able to introduce real food could meaningfully change the way we nourish her.
The hope is that eating begins becoming primary, tube feeding becomes supplemental, and eventually she simply does not need the tube anymore.
The medical team may believe that going home with a feeding tube is increasingly likely.
I haven’t acquiesced to that yet.
It may happen. I’m not pretending that isn’t possible. But I’m praying against its necessity and waiting to see what her body does as she eats more, strengthens, works with speech therapy, and continues healing.
Please pray that her swallowing continues improving, that she progresses to thinner liquids, that her hydration can eventually happen normally, that her voice continues returning, and that ordinary eating and drinking increasingly replace what the feeding tube has had to do for her.
And please praise God with us for what happened today.
It was not complete recovery.
It was incremental progress.
And right now, we are learning to thank God for incremental progress.
Reflections from Today
I listened today to an old Tim Keller sermon called “Joy in the Mourning,” from John 16:16–22.
I have talked before about 1 Peter and what Scripture tells us about the inevitability of suffering. Peter doesn’t speak as though trials are strange abnormalities that Christians somehow ought to escape. He speaks to people who are genuinely grieved by trials while simultaneously possessing a hope and an inheritance that their circumstances cannot destroy.
That can sound like a sobering message.
But today I was reminded of the other side of it.
There is not only an inevitability of suffering in the Christian life.
There is also, ultimately, an inevitability of joy.
In John 16, Jesus doesn’t tell His disciples that they will avoid sorrow. He tells them they will weep. He tells them they will grieve. He knows exactly what they are about to experience.
And yet He also tells them that their sorrow will be turned into joy.
There is a joy coming that no one can take away.
That struck me today because Christianity does not require me to choose between those realities.
I can hurt tremendously and still possess joy.
I can be afraid and still possess joy.
I can break down and still possess joy.
I can look at what has happened to my daughter and refuse to minimize one ounce of its horror while still believing that Christ is good.
For me, faith right now is not pretending the suffering isn’t there.
It isn’t suppressing it.
I don’t think there is strength in being stoic or trying to convince yourself to minimize the feelings you’re having. I would warn against that.
It doesn’t help me to tell myself something doesn’t hurt when it does.
I almost feel like I have to do the opposite.
I have to acknowledge it. Look directly at it. Immerse myself enough in reality to know what I’m actually feeling.
But then I have to allow truth to hold dominion over it.
My feelings are real.
They are not always the whole truth.
And yesterday was a pretty good example of that.
Last night was brutal.
I was exhausted. Afraid. Discouraged. I did not have a tremendous amount of hope going into today. Even with the swallow study, while praying boldly for Eliana, deep down I really thought it was going to be a complete failure.
That’s how pathetically fickle I am right now.
I’m trying to be steadfast. I’m trying to be even-keeled, and most of the time I’m just not. Recently, I’ve found that my emotions are far more susceptible to taking over.
But I’m learning that one moment does not define the journey.
Neither does one breakdown.
Faithfulness is not apparently going to mean that I maintain some perfect emotional equilibrium through the worst experience of my life.
It means that tomorrow I continue.
Sometimes I remind myself what is true.
Sometimes Shar reminds me.
Sometimes I remind Shar.
Sometimes a brother or sister in Christ sends something at exactly the moment one of us needs it.
Sometimes the church carries us because neither one of us feels particularly capable of carrying ourselves.
And underneath all of those things is something infinitely more important than my own ability to pull myself up by my bootstraps:
Christ in me, the hope of glory.
That phrase has been sitting with me today.
Paul says that these present afflictions are preparing for us an eternal weight of glory beyond all comparison.
I don’t pretend to fully understand everything contained in that statement.
But I think part of what Paul is telling us is that Christian suffering is not meaningless simply because we cannot presently identify its meaning.
There are things happening right now that I cannot explain.
There are things that have happened to Eliana that I would never call good.
HUS is not good.
Watching my little girl suffer is not good.
There is no theological need for me to make those things good in order to defend God.
And I don’t need to invent some earthly explanation that makes all of this “worth it.”
Paul gives us a much larger horizon.
What we see now is not all that there is.
The present affliction and the coming glory are not comparable.
And that brought me back to C.S. Lewis.
Lewis writes in Mere Christianity about this strange longing inside us that nothing in this world seems capable of finally satisfying. Earthly joys are real joys, and we should receive them gratefully, but they are not the final thing. They awaken something. They point somewhere.
Lewis talks about our “true country.”
And in The Weight of Glory he describes earthly beauty and longing almost as news from a country we have never yet visited, the far-off country for which we seem somehow to have been made.
I think that’s part of what I feel when I hear the gospel.
The word gospel means good news.
But why does that good news hit the Christian heart the way it does?
Because it tells us something that, by God’s grace, resonates at the deepest place within us.
You were made for God.
I was made for God.
We were made for communion with Him.
The final Christian hope is not simply that pain ends.
It isn’t even ultimately streets of gold, restored bodies, reunions, no hospitals, no machines, no disease, though I desperately long for restoration, and Scripture gives us tremendous reasons to hope for the renewal of all things.
The deepest promise is Him.
To be with Christ.
The far-off country is glorious because the King is there.
And somehow that future glory reaches backward into the present because the Christ for whom we were made is not merely waiting for us at the end.
He is here.
That’s one of the things I want anyone reading this to remember.
Because I’m not special.
Yes, I am a child of God.
Yes, I bear His image.
But if you belong to Christ, so do you.
This isn’t simply my story.
Suffering is part of the human experience. Christians across generations have walked through it. Some of you reading this already know exactly what I mean. Some of you may be suffering right now. And others will someday enter a kind of darkness you cannot presently imagine.
I would never pray suffering upon you.
But when it comes, I want you to remember something I am trying desperately to remember myself.
I cannot tell you what God will do with your circumstances.
I cannot promise you the outcome you want.
I cannot tell you that the diagnosis will reverse, the relationship will be restored, the person will survive, the prayer will be answered exactly as you are begging Him to answer it.
I don’t have that authority.
But I can tell you something else.
Christ will enter the darkness with you.
He will not leave you.
He will not forsake you.
Even when the place feels empty.
Even when it feels isolated.
Even when you cannot sense His presence.
Even when your own faith feels embarrassingly small.
Darkness is not abandonment.
And perhaps that’s why today affected me so deeply.
I had to leave Eliana for a while to get some sleep.
And I missed her.
I’m writing much of this before heading back to the hospital for another night, and all I can think about is what an unbelievable privilege it is to walk this journey beside my daughter.
I understand what someone could say: of course you are there. You’re her father. That’s your job.
Yes.
It is.
But obligation doesn’t begin to explain the joy.
I don’t know if I have words sufficient for it.
Today Eliana got into her wheelchair to go to the swallow study she had been excited about for days, the same swallow study Shar and I had been frightened about because we understood what a bad result could mean.
And she reached out for my hand.
She held my hand on the way there.
And I know something of what is happening inside her when she does that.
Daddy is here.
If Daddy is next to me, I can do this.
I can’t adequately explain what that does to my heart.
Because I know what kind of father I am.
I am finite. Inadequate. Inconsistent. Afraid. There are a thousand ways in which I fall short.
And yet God has given me this unbelievable gift of fatherhood and allows me, in these tiny moments, to provide my daughter with the faintest glimpse of something infinitely greater.
I’m here.
Give me your hand.
You don’t have to walk into that room alone.
And as I experience that with Eliana, I am simultaneously reminded that my Father is doing something infinitely greater for me.
I am holding my daughter’s hand.
And God is holding both of us.
Today I also got to watch her eat.
Applesauce.
Yogurt.
Simple things.
Things most of us consume without thinking about them.
I came in toward the end as she was finishing one of those squeezable applesauces.
And she was just lit up.
Pure, unadulterated joy because she finally had permission to eat again.
Think about what lights you up.
How many things produce that kind of inexpressible joy in us anymore?
And there was my daughter, after everything that has happened to her, absolutely joyous over something as simple as being able to squeeze applesauce into her mouth.
I got to stand there and watch it.
I got to experience that with her.
Because you have to remember that just days ago, I was watching her intubated, not knowing if she would recover, and not even being able to fathom whether she would consume anything ever again.
That isn’t simply something I will remember.
Something happened to me through experiencing it.
I know something now, existentially, about loving and serving another person that I did not know in the same way before.
And I pray, not that you would suffer, but that when life gives you an opportunity to stand in the gap for somebody, to serve somebody, to love somebody when it costs you something, you don’t miss what can exist there.
There is joy in it.
Deep, immeasurable joy.
The strange thing is that Eliana is supposed to be the seven-year-old learning from all of us.
And I feel like I’m learning from her constantly.
Today in physical therapy she walked until she needed to stop.
Then she wanted to sit next to me.
And for the first time in what feels like forever, I got to put my arm around my daughter’s little body and just hold her beside me.
Oh man.
My heart.
After everything, after machines, tubes, dialysis, ventilators, monitors, medications, emergencies, nights wondering whether she would live, there she was.
Next to me.
And I got to hold her.
She has been through pain, fear, uncertainty, novelty, unfamiliar rooms, unfamiliar people, procedures, weakness, loss of independence and a body that suddenly could not do the things it had always done.
And somehow she keeps going toward the next thing.
Not without fear.
But fear does not seem to get to make the decision.
She goes.
And so often she goes smiling.
She is still thoughtful.
Still herself.
Still capable of tremendous joy.
I look at this seven-year-old and I’m amazed at what she is teaching me.
And someday, Lord willing, I want her to read this herself.
That’s one of the primary reasons I’m writing these things down.
This is for all of you now.
But in a very particular way, it is for her.
Someday Eliana will be older.
I desperately wish I could promise her that this will be the last time she ever suffers.
I can’t.
She will live a human life.
She will love people and probably lose people. She will experience disappointment. Fear. Grief. Questions. Perhaps forms of suffering neither of us could imagine tonight.
And sweetheart, if you ever read this years from now, I want you to know what your dad was learning while sitting beside your hospital bed when you were seven.
I don’t want you to remember simply how strong you were.
You were incredibly strong.
But someday you may not feel strong.
And that is okay.
I don’t want your confidence to rest upon your ability to reproduce the courage you showed us at seven years old.
I want you to remember who was faithful to you when you were seven.
And who will still be faithful when you’re seventy-seven.
Jesus.
When suffering comes again, I cannot tell you what He will do with it.
I cannot promise you how He will answer.
But I can tell you what I am becoming increasingly convinced of in the deepest places of my soul:
There is nowhere you can go where Christ will refuse to go with you.
When you are strong, He is there.
When you’re afraid, He is there.
When your faith feels powerful, He is there.
When your faith feels futile, He is there.
When you’re angry, exhausted, confused, grieving, or cannot feel Him at all, He is still there.
And whatever darkness you encounter, it will not be the final reality.
This is what these Scriptures seem to keep telling me from different directions.
Peter tells me suffering will come.
Jesus tells me sorrow will not have the final word.
Paul tells me not to confuse what I presently see with everything that is real, and that an eternal weight of glory lies beyond comparison with present affliction.
Lewis gives language to the longing: we are homesick for a country we were created for.
And the gospel tells me why.
We were created for Christ.
So here we are.
Suffering now.
Christ now.
Tears now.
Joy now.
And glory still to come.
And tonight I will walk back into that hospital room, probably carrying some fear about what the night may hold.
But I will also walk in carrying what today gave me.
The sight of my daughter smiling in a wheelchair.
Her little hand reaching for mine.
Her face lit up as she finished that applesauce.
Her walking until she couldn’t walk anymore.
Her body resting against mine.
And the astonishing privilege of being her dad and walking beside her through all of it.
Not because I am extraordinary.
Not because my faith has been extraordinary.
But because Christ has been faithful when mine has wavered.
And if anything from this story is remembered years from now, that’s what I hope remains.
Not how strong we were.
Not how well we navigated this.
Not what we figured out.
Jesus was faithful to us in the darkness.
And He alone gets the glory.
Emilio Rivera
6 days ago
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