On November 23, 2016, after five months in the NICU at Riley Hospital for Children, we brought our Theo home for the first time.

How appropriate that our one year anniversary of being home falls on Thanksgiving; this day of acknowledging and naming the countless, daily graces given to us as gifts.

I don’t think anything could have fully prepared us for those first weeks home with a baby who has a trach and g tube, along with extraordinary lung and heart conditions. We went from the NICU where Theo was monitored 24/7 by a team of medical personnel, to home – with Rick and I responsible for the entirety of his daily medical care. It would be a month before we got in-home nursing help, so we were really on our own. It felt a bit like an exhilarating, terrifying free fall.

That first night home was a mix of joy and anxiety, of fear and wonder. We had left the NICU much later in the day than we would have liked, so we didn’t get home until close to 8pm – and it had been dark and pouring rain during the three hour drive from Indianapolis. (Why not add a little drama to the whole situation?)

Our bedroom was quickly transformed into a hospital room as Rick setup Theo’s medical equipment, which included a trach humidifier, oxygen tank and compressor (the medical rep just dropped the equipment and ran, so Rick had to figure it all out himself. HERO dad!). This was in addition to the feeding pump, pulse oximeter, nebulizer, and suction machine that we had already been trained to use at the hospital.

I won’t ever forget the feeling of climbing into bed that night (actually it was that next early morning!) and having Theo just inches from me. It was euphoric, like a dream come true.

All those nights of kissing him goodnight at the hospital and leaving him in the care of a nurse had been excruciating for me, even though we had the most wonderful nurses a parent could hope for. What was especially hard for me was that Theo could make no verbal sounds because of his trach. I had constant nightmares about him crying and no one coming to comfort him because his cry was not audible.

I would call the hospital multiple times a night, every night, to talk to the nurse and make sure that Theo was okay. Even on the nights that I had stayed at the hospital and “slept” (I use that term loosely) in his room, it wasn’t enough, wasn’t close enough. I wanted to crawl right into his NICU bed and snuggle him close to my chest, our hearts beating together as they were intended.

Home began a new chapter for us, a very different chapter than our first one, and one that we had longed and hoped would come. And it had.

Our biggest concern was that something would happen to Theo at home. In the hospital we had seen him code several times, watched him get chest compressions and be “bagged” (being “bagged” is when he is given manual breaths with a hand held pump that looks a bit like a balloon). We had been trained to help him in most scenarios where something could go wrong, but we had endured so many terrifying moments during our time in the NICU and these memories were not far from our minds. We had also heard many stories of babies ending up back in the hospital, for a variety of reasons, sometimes within days of going home.

Those first weeks and months home, our bodies were on constant alert to every movement Theo made. I was up hourly, through the night, for months.

Thankfully, as the days turned into weeks Theo grew and flourished. He became more stable and we began to feel like we could take a deep breath.

One year later we have a beautiful, thriving seventeen month old who has not required any unplanned hospital admissions and has had no acute complications.

Throughout the scriptures and particularly in the Old Testament, God’s people are told to remember and mark the many ways God has been gracious and faithful. Sometimes this even meant erecting an altar, a pile of stones, as a physical marker, a tangible reminder of Gods faithfulness.

We mark days like today. Remembering where we have come from and celebrating the progress we’ve made. Friends, God has been gracious to us this past year!


I’ll never forget the first time I walked into 4106 West, the room in the NICU at Riley Hospital in Indianapolis where Rick, Theo and I would spend the next four and a half months of our lives – 138 days. That first night is cemented into my mind, the images of Theo hooked up to so many machines and wires and IVs that I could hardly see his broken little body.

That night I could not have imagined all that this room would hold.  

I didn’t know that first night that this would be the room where we would receive the worst news and the best news; where we would meet the nurses, nurse practitioners, respiratory therapists and doctors who are God’s hands on this earth; where we would weep for what everyone thought would be our last day with Theo; where we would witness a miracle; where I would learn to be Theo’s mother, learn courage, learn to be a warrior.

Those first weeks were such a blur. The number of people coming into our room on a daily basis was staggering – teams of doctors, nurse practitioners, social workers, case workers, custodians, lactation specialists. During morning rounds we were listening to numbers, trying to understand all these new acronyms – TPN, NPO, SVT, and what they meant for our Theo each day. We were learning to be his advocates and make sure the best decisions were being made. I was pumping breastmilk every 2-3 hours.  

Our entire universe became this room. Everything happened here: 18 days of ECMO, multiple PICC lines, a heart surgery (yes, IN this room!), an abdominal surgery, bronchoscopes, too many X-rays to count. This room held it all. 

I won’t forget the place I was standing when the nurse practitioner told us Theo had a lung condition that was incompatible with life… and the place I was sitting when a week later we were told he did NOT have that condition.

I won’t forget the spot on the floor in the corner of the room where I lay in a crumpled heap, begging God to save Theo as he coded, have mercy, oh God, his heartbeat slowing from 120 to 75 to 60 to 27. His oxygenation dropping from 90 to 59 to 15. The code blue alarm, the crowd of medical personal filling our room, gathered outside our room; chest compressions; the nurse who knelt on the floor next to me and let me cling to her hand. 

This is the room where I witnessed death and resurrection. 

I won’t ever forget the place in this room where the doctor sat when she told us that there was nothing more to do and we just had to make Theo comfortable, hold him one last time. I remember so vividly that she cried and it meant so much to me that she cared. My heart walked through that day and those moments in such anguish. I think of it as the day that he died. I still have to remind myself that he didn’t, that he is here, beating heart and all. 

On those death days I would sit next to his bed all day. I would tell him about what our life was going to be like. That it was going to be his job to chase the bunnies from the garden and that he had to help me pick strawberries and that summers in northern Indiana are the best. I would whisper to him that he couldn’t leave me; that I needed him and he must fight to stay with us. I didn’t know what day it was or the date or sometimes even the month. It all blurred together like a centrifuge around his bed, spinning and whirling and I was just trying to hold on; hold onto him, onto my heart. 

This is the room where we waged war for Theo’s life. Where we prayed over his body and spoke LIFE to his spirit. Where we read scripture over Theo – words containing all those promises, all those victories, the image of a Father who is only and always good. The stories of a God who loves to hear us pray and loves to answer those prayers. A God who always desires healing and wholeness. 

This is the room where we sang truth over Theo. Songs from others, songs from our hearts, songs given as gifts; songs sung, songs played; songs in the quiet of the afternoon and in the moments that were filled with pain and uncomfortable procedures. I am here baby boy, and all I can give you right now is a song. 

I wanted to be as close to him as possible during every painful procedure. If I could have crawled into his bed and wrapped myself around him I would have. 

This tiny room held our hearts. And I often wondered what other hearts it had held; what babies had lived and died in this room? and would Theo be remembered with the ones who lived or the ones who died? 

Once you leave the NICU at Riley you don’t go back. The NICU is for babies who haven’t been exposed to the world. They come here fresh from their mother’s wombs. If a baby is admitted to the ICU and they come here from the outside, they go to pediatric intensive care unit. And so our goodbye here will be final, bittersweet. 

Tomorrow we will say goodbye to the nurses on the 4th floor at Riley, nurses who have wrapped us in love and the best possible care. Who have loved our son and watched him grow the first four and a half months of his life. Who have cared for him night and day, at times not knowing if he would make it to the next. Who have invested themselves in us, have opened their hearts to us. 

You can’t undo any of what has happened over the past four and a half months, not in this lifetime. I wish for Theo’s sake that I could undo it all. All the pain and separation and sticks and surgeries. These months have been awful, hellish, there is no denying it, but God has met us in it. He has walked these dark days and nights with us, had shared our moments of anguish. He has met us in time and space in this room. 

4106 has become a sacred, holy place. It’s were we walked through fire, through the dark valley, and we have been changed. 

We have waged war in this room and you have waged it with us. And we have won. 

Farewell, 4106 West.


Undoing All the Sad

While waiting during one of Theo’s surgeries. 

I’ve lost count of the times I’ve had to wait in this OR waiting room. Of the times I’ve been asked to be braver than any mother wants. Of the times I’ve kissed tiny cheeks goodbye with tears streaming down my own. 

I long for “normal” days to come; days when I’m not counting the numbers of breaths Theo takes or how high his oxygen saturation is or isn’t, or how fast his heart is beating. There is no normal here and my heart grieves this loss for Theo, for me, for Rick. That we can never get this time back, we can’t re-do it and erase the trauma that the last 56 days have held.

I keep telling myself that we will make this all up to him. That when we are done with endless blood draws and discomfort and surgeries, that we will make sure he is so happy to be alive, that all of this pain was worth it because this life is with living; that there is good here and it’s worth the fight. 

Many wonderful Christian thinkers speak of the hope to come after this life, what N.T. Wright calls “the life of the age to come,” when heaven and earth are one. When all is finally well. Timothy Keller talks about the undoing of all the sad things – that all the sad things will come untrue. John speaks of it in his book, Revelation – the wiping away of all tears, finally and completely. Dostoyevsky writes of it when he says that in the end all the pain we experienced will be made up for. 

I cling to these truths. If all that we have is in this life, even with all its good, it would feel so hopeless. But to know that all of the pain and loss that my baby is enduring, that I am experiencing – all the pain of all the mothers in the history of the universe – will be undone, will be made up for, will be transformed into something good? This is hope. 


Reflections of a NICU Mother

You never think that it will be your baby who ends up in the NICU. It won’t be your baby who has a broken heart and broken lungs and other little broken bits. 

That happens to other people. Other people and other babies who are not you and certainly not your baby. 

But then it does happen and everything you once thought you knew about life is indelibly, violently changed. Watching your baby suffer and living in the uncertainty that comes with life in the NICU – or any ICU, alters your soul, the core part of you, in a way nothing else can. Regardless of the outcome, life is never the same. You can’t ever go back. Your heart is seared with the terrifying realization of both the fragility of life and of the singularity of the child you love with such fierceness it consumes your entire existence. Were this particular child to no longer be here, there is the sense that it would be a loss for the entire universe.  

My heart broke a hundred times a day our first month in the NICU. Each hard moment came like a wrecking ball to my heart, over and over until I didn’t think I could bear another moment, another procedure, another hard day and night, another second of my baby’s face distorted in pain. But I do keep bearing it and my heart does keep breaking. Huge, weighty pain. Like when you pound your finger with a hammer and there’s nothing that makes it better. 

My baby boy has been on this earth for 8 weeks and I’ve not yet heard his cry or seen his face without the tape and tubes that are keeping him alive. I ache that I’ll never have those sweet delicious first weeks of life with my boy, tracing the pattern of his fingers and nose, snuggled close. I mourn this loss deeply. 

It takes a team of people to move him from his bed to my aching arms. I’ve not breast fed him and though I pump day and night, 3am in the dark of my hotel room while he is in a hospital down the street, his little body has had a hard time with food. I ache that we sleep in separate buildings, for weeks and now months. I feel as though my very DNA has been altered by all of this separation – like I am missing a limb or organ. 

I’ve lived in a place where the walls know death all too well. Where it is always lurking, always nearby. Where mothers leave with empty arms and ache that has no words. 

Procedure after procedure and I’m discovering that waiting rooms are the place of wrestling hearts and battles. The TV in the background and my eyes locked on the door waiting for someone in scrubs to walk in and tell me what I ache to hear. Prayers for Jesus to wrap my boy and be to him what I can’t be in this moment. I believe, help my unbelief. My heart is in my stomach and I would give my own heart for his, my body; if I could bear this all for him I would. 

I write a note to our previous neighbor, the mama who lost her baby boy last week. 

I hear the helicopter land on the roof above us and my heart drops into my stomach. Things are never good when your baby arrives at the hospital in a helicopter. Jesus, be near. 

All of the beds in this NICU are full and my heart rages against this. 

I walk through the lobby and see a dad pulling a red wagon carrying his little girl and her oxygen, eyes dark and skin pale. The world broken. Evil is so hateful, so cruel to take these most innocent ones. 

Last week we again walked through the valley of the shadow of death, so close I tasted it, smelled it, touched it. We were at the end of what could be done and that conversation with the doctor that you have actual nightmares about. The thought that haunted me was how would I be able to leave his body in the room and walk away? And what do hospitals do with dead babies?  How could I say goodbye for the last time? How could I ever let go? 

We were spared that as tiny miracle after miracle quietly, discreetly crept in until hours had passed and then a day and then a week. The nurses still peek their head into our room with a smile and a “we’re so glad you’re still here!” 

The only thing more exhausted than my emotions is my body. Utter exhaustion. My postpartum has been spent in the halls and rooms of two NICU’s. I demanded (nicely) to be released from the hospital, just 24 hours after an incision in my womb, because my baby was in a NICU on the other side of town. He had been earthside for 24 hours and I’d seen him 20 minutes. 

People say I have to care for myself, but NICU moms know how silly this is. Of course my world is now this baby and all I can do is stand next to his bed. My back and neck will probably need chiropractic work for life from hunching over his bed all day, for weeks. My ankles and legs swell. I’ll sleep later. 

I can’t look at Facebook or Instagram – all that filtered, effortless happiness. What a miracle to have a healthy baby. I’m stunned by it, almost incredulous. How does so much go right so often? How are all these people walking the earth and their hearts work so well? How is it that my heart works so well, beating, aching? 

My lens of the world shifts and this is one of the gifts that suffering brings. Those who suffer are given a piercing awareness, an appreciation, an ability to more deeply absorb the good and beautiful in the world and to differentiate what is empty and meaningless. What may have been blurry before suddenly comes into sharp focus. When you’ve walked through the darkness of The Valley, the rest of the world is never the same. 

It’s wild how suffering changes you, molds you, presses on you. I have scars on my body and the ones in my soul are still forming. I hold tight to those words I’ve read – the ones about the undoing of all the sad things, the reversing of all the broken things; about all the tears that will be wiped away. There are so many tears here. And so we wait and ache and hold on to hope. 


Through the Darkness of Miscarriage

I am among the 15-20 percent of women who will lose a baby to miscarriage. It was our first baby. Fall of 2015.

Doesn’t the human soul desperately yearn for the unspoken promise of escape from the bitter touch of pain and suffering? And yet suffering comes, ruthlessly and uninvited, ignoring boundary lines and invading even the most precious places.

What scars does your heart bear from marks carved deep?

Slow Hearts, Broken Hearts
I am in a doctor’s office in a dimly lit room, lying on a table covered in crinkly paper, my heart threatening to beat out of my chest. An ultrasound technician stares at a screen as she moves a probe across my belly and my eyes anxiously search her face for a hint of what she is seeing. Time is suspended; the moment an eternity. She turns the screen toward me: a small, fuzzy, pulsing circle. My baby’s heartbeat.

The technician quickly explains that the baby is not growing and the heartbeat is slow. Too slow. In this moment I am forced into an uncharted cavern of ache as death hovers over my womb.

We wait three anxious, torturous weeks for the too slow heartbeat of our first child to stop.

How, exactly, do you wait for your baby’s heart to stop beating? What do you tell your own beating heart? And what about a world filled with millions of lifeless babies, never permitted a breath outside the womb? Or too few breaths? What of the countless mothers asked to bravely move forward despite death trespassing and the world’s greatest sign of hope becoming their intractable horror?

I have a procedure on a Friday to remove our lifeless baby from my body. It is my darkest day. We park our car and walk towards the hospital entrance and I am just barely keeping a torrent of emotions at bay, like a dam that will burst if the tiniest hole is made. I can hardly speak. The thought that is nearly unbearable: I am walking into this hospital with a tiny baby body inside of me, and I will be leaving without it.

I am terrified of the invasive medical procedure. The next hours are harshly vivid, surreal. The waiting area. The pre-op room. The ceiling as I am wheeled into the cold operating room. Big, bright lights. A mask over my face. It is all too much to bear. And then, mercifully, all goes black.

I emerge from the hospital six hours later, a childless mother.

Dark Days
In the days that follow waves of sadness and loss, wild and fierce, roll over me. My grief is demanding; its intensity unexpected. I am swallowed by emptiness.

In this dark valley, of which there is no going around, only through, I discover blistering heartache.  One only knows heartache by walking in it, caught in its unrelenting grip. I have been caught, forced to look it in the face. My suffering is certainly not the hardest; there are many who are in the midst of deeper, ongoing suffering. But as Nancy Guthrie says, “…there is no real comparison of pain. It all just hurts.”

I am not prepared for how difficult and complicated it is to process the experience of loosing my baby to miscarriage. It is a silent suffering, a secret club, spoken of in cautious whispers and understood only by those who have traversed its way. I look for other mamas who have this same irreparable fracture in their heart, because they know without me even having to use words. There are some people to whom I cannot speak about it, because my heart cannot bear the thought that they would not understand how precious this child was to me.

I wrestle for months with the weight of my grief, and this is what I am coming to understand: all babies who die within the womb are unrepeatable in the history of humanity. I mourn this loss acutely.

Traces of Hope
There is much I don’t know and understand, especially regarding pain and suffering. I wrestle with the darkness and cruelty this world can hold.

I lean into the questions and find more questions. But I also discover that God is better and kinder than I previously understood. This miscarriage is not from him, this taking of my baby. He only gives good. I’m caught in the crossfire of a world that has gone wrong, but is also in the midst of being put back together; I’m caught in the cracks that stem from Eden, still splintering and breaking the earth and my own heart.

As I walk through my grief, I search desperately for truth, like a woman whose sanity depends on it. Timothy Keller’s book, Walking with God through Pain and Suffering, is among the dearest of companions.

Keller says that because of what Jesus Christ accomplished on the cross and through his resurrection, God is going to give back to us what we have lost in such a way that it will allow us to experience greater joy than if we had not lost it in the first place. Greater joy. Also, God will not merely console us; he will fully restore what was lost. 

In the book Preparing for Heaven, Gary Black Jr. captures the vision of heaven that late Dallas Willard had formed after decades of philosophical and theological study. It is one of the clearest visions of eternity that I have encountered and a stunning reminder that death in this life is just the beginning of the best kind of life, that what awaits me is an eternity of ceaseless joy with my child, and that this eternity is a reality more vivid and real – laughter, the smell of grass, a gentle breeze, hummingbirds, tiny fingers –  than my best day here.

And this, that precious promise:

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.”

There is no diminishing the unpleasantness of these waters, rivers and fire and their inescapable reality. What is most important is Immanuel, which literally translates God with us, walking these realities with me; walking in my pain, sharing my ache, my terror, my vulnerability, a ghastly medical procedure. Few know the pain of a mother’s heart broken. He knows it fully.

These truths gives me what I need most on the darkest days: hope.

People also bring me hope. The ones who do pause to be with me, who take my hands and look me in the eyes and acknowledge my invisible, hemorrhaging heart, they help bear some of the weight. They show me the truest of God and humanity.

The ground outside of my home is currently covered in snow. The trees are bare, the world quiet, cold, still. All seems dead. But this is not the end. Spring, wild and unstoppable, will paint the world again and every blade of grass, every tree, every bird, will sing the hymn of resurrection.

He will swallow up death forever;
and the Lord GOD will wipe away tears from all faces,
and the reproach of his people he will take away from all the earth,
for the LORD has spoken.
Isaiah 25:8