The NICU Saved My Son And Killed Me.

 I don’t even know where to start. That is part of the problem. There is no beginning anymore. There is no clear sequence of events. There is no neat explanation that makes any of this make sense.

It is all just one giant tangled ball of nerves and pain and anger and fear and guilt and exhaustion that lives inside of me all the time.

It never shuts up. My brain never shuts up. Even when I am sleeping, if I am sleeping, I am still here. 

I am still in the NICU. 

I am still listening for alarms.  I am still waiting for the phone to ring. 

I am still wondering what decision is being made without me. I am still wondering whether someone is responding to Leo. 

I am still wondering what I forgot, what I missed, what I should have questioned, what I should have pushed back on harder.

I feel like I have been screaming into a void for 108 days.

And I am so fucking tired of screaming.

The NICU has taken everything from me.

Not Leo. Never Leo. I would choose Leo every single time. I would walk through fire for him. I have walked through fire for him.

But this place has taken almost everything else.

It took my pregnancy. It took the ending I was supposed to have. It took my birth. It took hearing my baby’s first cries. It took having him placed on my chest.

It took the moment where the whole room disappears and there is nothing but a mother and her baby meeting each other for the first time. It took bringing him home. It took the newborn stage.

It took the fourth trimester. It took the sleepy newborn cuddles and the quiet nights and learning my baby in my own home without monitors, strangers, rules, schedules and an audience.

It took the version of motherhood I was supposed to have.

And then it just kept taking.

It took my ability to be home with my other children. It took bedtime with my toddlers. It took birthday parties. It took dinners with friends. It took dinner with my own family. It took sitting around my own table. It took attending my daughter’s school event. It took taking my daughter out to practice driving. It took something as small and stupid and normal as dyeing her hair. I have not even been able to do that because I am never home long enough.

Because I have to be here.

Because every single piece of my life has to be weighed against the hospital.

Can I leave? Can I make it back? Can I miss this care time? Can I miss rounds? Can I go home? Can I take a shower? Do I have enough time to take a shower? Can I go to the grocery store, or do I have to order groceries again? Can I go home and cook dinner, or do I need to stay? Can I make my post-op appointment? Can I meet with my psychiatrist? Can I go to therapy? Can I take my children to therapy? Can I take my kids to the dentist? Can I take care of myself? Can I go to a massage therapy appointment? Can I sit down for one fucking second without looking at the clock?

My entire life exists in three-hour blocks.

Three hours.

Three hours.

Three hours.

Care time.

Pump.

Drive.

Rounds.

Feed.

Pump again.

Can I squeeze one small piece of my real life into the space between now and the next three-hour mark? Can I be a mother to one of my other children for forty-five minutes before I have to leave again?

Can I be a wife? Can I be a friend? Can I be a patient? Can I be a human being? Or do I have to be Leo’s advocate every second of every day because there is no consistency and no continuity and no one else has been allowed to know him the way I know him?

When I am at the hospital, I am missing my children. When I am home, I feel like I have abandoned Leo. There is nowhere I can go where I am not failing someone. There is nowhere that does not hurt. The hospital does not feel like home. My house does not feel like home. I spend the drive to the hospital wishing I could stay home. I spend the drive home wishing I were back beside Leo.

I exist somewhere between parking garages and pump parts, between hospital hallways and car seats, between being the mother of five children and feeling like I am failing every single one of them.

I miss my kids while they are still living in my house. I miss my husband while we are still married.

I miss myself while I am still technically alive. It has taken my marriage.

We cannot even consistently go to marriage counseling anymore because I have to be here.

Because every appointment becomes another impossible decision.

Do I work on my marriage or do I attend rounds?

Do I sit beside my husband and try to save what is left of us, or do I sit beside my son and make sure someone explains the plan?

Do I go to counseling, or do I stay because a new nurse has him and says, “I don’t think I’ve ever had him before”?

One hundred and eight days.

One hundred and eight days, and people still walk into his room and tell me they have never had him before.

One hundred and eight days of introducing my son.

One hundred and eight days of explaining what works.

Explaining what does not work. Explaining how he settles. Explaining what he likes. Explaining what he hates. Explaining what we already tried. Explaining what happened last week. Explaining why I am concerned. Explaining why I am asking. Explaining why this matters. Explaining the same baby over and over and over to an endless rotation of people.

And then people wonder why I cannot leave. I cannot leave because I have seen what happens.

I have seen babies cry and scream while no one goes into the room. I have walked into Leo’s hallway and heard him crying and fussing while nurses were busy, unavailable, somewhere else, or completely unaware.

I have seen enough to know that I cannot blindly trust that someone will always respond to my baby.

That is not me being irrational. That is not anxiety inventing a problem.

That is something I have witnessed. The NICU has taken my ability to trust that people will respond to my baby.

It has taken my ability to trust that his emotional and developmental needs will matter when I am not standing there.

It has taken my ability to go home and sleep without imagining him crying in a room while the rest of the unit keeps moving.

So I stay.

I stay because someone has to remember.

Someone has to notice.

Someone has to respond.

Someone has to speak for him.

Someone has to ask why.

Someone has to say no.

Someone has to challenge the plan.

Someone has to fight.

And that person has been me.

Day after day after day.

I am angry because so much of this did not have to be this hard.

Maybe it could not have been prevented. Maybe the NICU stay itself could not have been prevented.

Maybe Leo needed all of this medical care.

But so much of the psychological destruction could have been displaced by one simple fucking thing:

Consistency.

Continuity.

Familiar faces.

A primary nurse.

Someone who knew him.

Someone who did not need the entire story explained again.

Someone who remembered what happened yesterday.

Someone who knew me well enough to understand that when I raised a concern, it was not because I wanted to be difficult.

I asked for that when Leo was like eight days old.

Day of life eight.

I knew then what we needed.

I asked. I advocated. I pushed. I pleaded. I begged for primary nurses and continuity of care. 

And now he is 108 days old. One hundred days after I first asked.

And it still has not happened.

Other babies have two or three primary nurses.

Other families have familiar people who know their babies.

Other parents get to walk into the unit and see the same faces.

And Leo does not.

How is that fair? What was different about Leo? What was different about me?

Why was the thing I begged for, the thing that could have given me even a small amount of peace, somehow impossible for us while it clearly existed for other families?

I am so angry because even a little bit of consistency could have changed my entire ability to cope.

It could have allowed me to separate from the NICU for a few hours.

It could have allowed me to go home and believe that the person caring for Leo knew him.

It could have given me one night where I did not feel like the only person holding his entire history in my head.

It could have let me attend my daughter’s play without staring at my phone.

It could have let me sit at dinner with my family without feeling like I had made the wrong choice.

It could have let me go to therapy. It could have helped me make it to my own medical appointments.

It could have helped my marriage. It could have helped my other children have their mother.

It could have prevented some of this from becoming so fucking unbearable.

And I know that because I have seen what consistency looks like for other families.

I have seen what happens when a nurse knows a baby.

I have seen the relief it gives parents. I have seen the trust that can develop.

I asked for it. I kept asking for it. And I was fed the same meaningless lines over and over.

“Let me see what I can do.” 

“We’re working on it.”

“Let me look into that.”

“We’ll send out an email.”

“I’ll get back to you.”

Those words do not mean shit to me anymore. They make me angry. They make my stomach turn.

They are a cop-out. They are something people say when they want the conversation to end.

They create the illusion that something is happening while absolutely nothing changes.

It is like dating someone who keeps telling you he is going to buy you flowers.

He says he wants to. He says he is planning to. He says he has just been busy.

He says he did not have time to stop at the store. He says maybe tomorrow.

And eventually you realize that the flowers are never coming.

Eventually the promise itself starts to feel insulting.

Eventually hearing “I’ll see what I can do” hurts more than hearing no.

At least no would have been honest.

I did not stop asking for continuity because it stopped mattering.

I did not stop asking because I was better. I did not stop asking because I no longer wanted it.

I did not stop asking because Leo no longer deserved it. I stopped because I got smart enough to realize that nothing was going to change. I stopped because I got tired of asking the same question and receiving the same empty answer. I stopped because hope became another way for this place to hurt me. I stopped because every promise forced me to let myself believe for one second that maybe this time would be different.

And then it was not.

Again.

And again.

And again.

I gave up on that fight because I was exhausted from beating a dead horse.

But I still need it. I still want it.

Whether Leo is here for five more days or five more weeks, I still wish he had a primary nurse.

I still wish he had consistency.

I still wish the final days or weeks could feel even slightly easier after everything we have already survived.

I still wish I could walk through those doors and know who was caring for my baby.

I still wish I could go home without fear.

I just do not ask anymore because I do not believe it is going to happen.

And that is another thing the NICU took from me. It took the part of me that believed asking could make a difference. It took the part of me that hoped people meant what they said. It took the part of me that believed a system would respond if I explained my pain clearly enough.

That part of me did not disappear all at once.

It was worn down.

Conversation by conversation.

Promise by promise.

Meeting by meeting.

“We’re working on it.”

“Let me see what I can do.”

“We’ll look into that.”

Until one day I stopped asking. Not because I surrendered the need.

Because the part of me that believed anything would happen had died.

There are a lot of parts of me that have died here.

I physically did not jump from the top of that parking garage months ago.

But emotionally, I think part of me did.

Part of me never came back down. Part of me stayed up there. Part of me stayed in the operating room.

Part of me stayed beside the incubator. Part of me stayed in the psychiatric emergency room.

Part of me stayed in every parking lot where I sat in my car and cried before driving home to children who still needed a mother. Part of me stayed in every pumping room. Part of me is in every bottle. Every syringe. Every hospital bracelet. Every note I wrote because I was terrified someone would forget. I have left pieces of myself everywhere. And I do not know if I am ever going to get them back.

The NICU has taken my mental sanity.

Literally.

I have gone insane inside of this.

I have ended up in a psychiatric emergency room.

I have never been on this much medication in my entire life.

I have rescue medication.

I have taken the rescue medication and still felt like I was going to crawl out of my own skin.

I had a massive panic attack and wanted to run my car into a tree. I'm safe now. I probaly always was. But that doesn't decrees the reality of what it is.

But I also need someone to understand how bad it gets. I do not want to make that sound prettier than it was. I do not want to wrap it in language that makes other people comfortable.

Itss was terrifying. It's real. And it happened after months of being told to keep going.

Keep advocating. Keep pumping. Keep showing up. Keep fighting.

Keep trusting the process. What process?

The process of being worn down until I no longer have the energy to argue?

The process of being pushed until I am so desperate to take my baby home that I will agree to almost anything?

Because that is what is left now. A mother so broken that she will do anything to take her baby home.

Even if it means giving up. Even if it means letting them do whatever they want. Even if it means swallowing every question. Even if it means agreeing to plans, I do not agree with. Even if it means tucking my tail and lying down because I do not have the strength for one more battle.

And I am angry because sometimes it feels like that is exactly what they want.

It feels like they do not want parents to fight back.

They do not want us to push back.

They do not want us to say no.

They do not want us to challenge the plan.

They do not want us to ask questions that require explanations.

They do not want us to ask whether there is another route.

They want agreement.

They want compliance.

They want the parent who nods and says okay.

They want you to believe that asking questions makes you difficult.

They want you to believe that disagreement means you do not understand.

They want you to feel grateful enough that you stop challenging them.

And when you do not stop, when you keep asking and pushing and fighting, the system exhausts you. Maybe no one sits in a room and says, “Let’s break this mother.” Maybe it is not a conscious plan. But that does not change the outcome.

The outcome is a mother who has been kept in crisis mode for 108 days.

The outcome is a mother who no longer trusts anyone.

The outcome is a mother who has no life outside of the hospital.

The outcome is a mother who has stopped asking because she has learned that asking changes nothing.

The outcome is a mother who will eventually agree to almost anything because she is desperate to escape. Whether that is intentional or not, that is what this system has done to me.

The whole unit feels designed to prevent people from becoming too close. Friendships are made almost impossible. Connection is treated like a problem.

I cannot just stop at an open door and say hello to another family, even when that family has told me it is okay.

I cannot walk into another hallway to drop off a gift for a friend without being made to feel like I am doing something wrong. I cannot go see a favorite nurse and catch up like a normal human being.

God forbid a nurse becomes familiar. God forbid someone is assigned to Leo again. God forbid a parent finds one safe person inside this place. God forbid we build a community with the only people in the world who might actually understand what this feels like.

Everything is controlled.

Everything is separated.

Everything is limited.

And then people wonder why NICU parents feel isolated.

They wonder why we feel alone.

They wonder why we cling to the bedside.

They wonder why we cannot regulate ourselves.

They wonder why our entire nervous systems are on fire.

We are trapped in a place that tells us to build trust while making continuity almost impossible. We are told to take breaks while being shown over and over that care is inconsistent. We are told to go home while our babies are handed to another person who has never met them. We are told to care for ourselves while every aspect of the system teaches us that leaving is dangerous.

It is gaslighting.

That is what it feels like.

Being told that I need to step away while being given no reason to trust that I can. Being told that people are working on things while watching nothing change. Being told my concerns are heard while having to repeat them again the next day. Being told I am part of the team while being made to feel difficult whenever I disagree with the team. Being told to rest while living in three-hour blocks. Being told to trust while my baby is cared for by a revolving door of strangers. Being told to take care of my mental health while the basic thing I have identified as essential to my mental health—continuity—has been treated as optional.

I am angry.

I am so fucking angry.

I am angry at the system.

I am angry at the rotation.

I am angry at the lack of consistency.

I am angry at every empty promise.

I am angry that I had to become a medical expert just to feel like my baby was understood.

I am angry that I have had to fight against medical choices I did not agree with.

I am angry that asking questions made me feel like an obstacle.

I am angry that advocating for my baby became a full-time job that consumed the rest of my life.

I am angry that I have spent half of this NICU stay fighting the NICU itself.

And now I am too tired to fight.

That is not peace. It's defeat.

That is not trust. It's surrender.

That is not me finally understanding the plan. That is me being so broken that I no longer have the strength to challenge it.

There is a difference.

And then on top of it all there is breastfeeding.

Breastfeeding. The one thing I thought might still belong to Leo and me. The one part of motherhood that felt like it might be ours.

Except it is not ours. Not really. Yes, I can breastfeed.

But only with stipulations.

Only at certain times. Only according to the schedule. Only around care times. Only after the temperature. Only after the weight. Only if the monitors reach. Only if the oxygen tubing allows it. Only if someone is available. Only if we can measure it. Only if we still give a bottle. Only if he gets fortified feeds. Only if it fits into the plan.

That is not just breastfeeding. That is breastfeeding under surveillance.

It is breastfeeding as a medical procedure.

It is one of the most intimate things between a mother and her baby turned into weights and numbers and clocks and people watching.

Pre-weight. Post-weight.

How much did he transfer? How long did he nurse? Does it count? Does it meet the volume?

Does he still need the rest through a bottle? Every part of it belongs to someone else’s rules.

And while I am fighting to hold onto breastfeeding, they keep increasing his feed volumes.

Again. And again. And again. More volume. More milk.

More than my body can make. My body is trying. God knows my body is trying.

I pump every two hours. I power pump. I wake up at night.

I set alarms. I drink water. I eat. I try supplements. I rearrange my entire life around a machine.

I leave my baby’s bedside to pump milk for my baby. I leave my other children to come to the hospital.

I leave the hospital to try to see my other children. Everything is leaving someone to take care of someone else.

And still, my body is falling behind. Every feed increase feels like a judgment.

Every increase feels like another race I cannot win. Every increase feels like someone moving the finish line farther away while I am already crawling.

I watch the ounces go down. I watch his needs increase faster than my body can respond.

I watch the gap get wider. I know people are going to say that fed is best. I know formula exists. I know love is not measured in ounces. I know all the correct things people say. That does not touch the grief. This is not about whether Leo will eat. 

This is about one more thing being taken. One more piece of motherhood slipping out of my hands. One more place where I am not enough.

After my pregnancy. After my birth. After the newborn days. After losing time with my children. After my marriage. After my sanity. After everything.

Now my body cannot keep up either. It feels like my body is failing him.

I know that may not be medically fair.

I know there are explanations. I know stress affects supply. I know pumping is not the same as nursing.

I know his needs are growing because he is growing. I know all of it.

But in the middle of a panic attack, facts do not matter.

It just feels like failure.

It feels like the NICU has taken everything it could take from me and is now standing there waiting for the last few ounces.

People tell me to be grateful.

I am grateful. I am grateful Leo is alive. I am grateful for the medicine that kept him alive. I am grateful for the people who have cared for him well. I am grateful for every step forward.

But gratitude and grief are not enemies.

Gratitude does not cancel anger. Gratitude does not erase harm. Gratitude does not mean silence.

The NICU saved my son’s life.

The NICU has also taken pieces of mine.

Both are true. I am allowed to say both. I am done pretending the second truth is an attack on the first.

People say we are almost there.

Almost where? Home? What is home anymore?

People think discharge is the finish line.

I do not.

I am terrified that discharge is the moment the noise stops long enough for me to feel everything. Right now, I am held together by care times and rounds and alarms and pumping schedules and the next problem that needs solving. Right now, survival gives me instructions.

Wake up. Drive. Pump. Advocate. Feed. Ask. Fight. Repeat.

What happens when I go home?

What happens when the hospital routine is gone? What happens when there is no next round, no nurse entering the room, no doctor to argue with, no immediate crisis to keep me moving?

What happens when I am finally home and my body realizes we survived? What happens when all of this catches up to me?

What happens if I fall apart?

People think home will fix me. Home will not give me back 108 days.

Home will not give my children their summer back. Home will not put me in the spaces I was absent from.

Home will not give me the birthday parties I missed. Home will not give me the dinners.

Home will not restore my marriage to what it was. Home will not make me trust people again.

Home will not erase the psychiatric ER. Home will not remove the medications from my body. Home will not bring back the part of me that emotionally jumped from that parking garage.

Home will not return every piece of me that I left behind.

I hope I find some of those pieces again.

I hope there is still a Laura underneath all of this.

I used to know who I was.

I was a mother.

A wife.

A doula.

A friend.

A person with thoughts that did not revolve around oxygen, feeding volumes, schedules, rounds and discharge plans.

Now I do not know where the NICU ends and I begin. I do not know who I am outside of this fight.

I do not know how to stop fighting. I do not know how to rest. I do not know how to believe anyone.

I do not know how to leave. I do not know how to stay. I am a bundled-up ball of nerves and pain.

Nothing I feel makes sense, even to me. I can feel hopeful and hopeless within the same minute.

I can be proud of Leo and devastated for myself. I can be grateful and furious.

I can love him more than anything in the world and hate everything we have had to endure to keep him here.

I can want to take him home so badly that I would do anything and still feel terrified that taking him home will finally break me.

I am not writing this to make sense. I am not writing this to be persuasive. I am not writing this to make anyone comfortable. I am not writing it to protect the unit’s feelings. I am not writing it to make sure nobody gets offended. I'm not writing this hoping it will bring a change, because we all know it won't.

 I have spent enough time considering everyone else.

The nurses. The doctors. The support staff. The administrators. My husband. My children. My friends.

Everyone who says they are worried about me. Everyone who wants me to be grateful. Everyone who wants me to phrase things carefully.

This is not for them. This is me and my car and my phone and my brain racing out of control.

This is what it sounds like inside me. This is what 108 days of NICU has done.

It has taken my time. My trust. My marriage. My friendships. My work. My body. My milk. My motherhood. My sanity. My belief that asking for help means help will come. My belief that systems care about the people trapped inside them. My ability to be present anywhere. My ability to rest. My ability to feel safe.

It has turned me into someone who is always bracing for the next fight. And now I am so tired that I am willing to stop fighting.

Not because the fight is over. Not because they were right. Not because I agree. Because there is nothing left. 

They did not convince me. They exhausted me.

There is a difference.

This is not acceptance. This is collapse.

This is not me trusting the plan.

This is me wanting my baby home badly enough that I will swallow the questions.

This is what brokenness looks like. This is what defeat looks like.

This is what surrender looks like.

It is not peaceful. It is ugly. It is angry. It is painful.

It is a mother realizing she has fought so long that she no longer recognizes herself.

It is a mother knowing she still needs consistency and no longer believing it will come.

It is a mother who has been screaming into a void for so long that she finally stopped—not because the void answered, but because she lost her voice.

I while I am safe right now, I am not okay. Those are not the same thing.

I need someone to look at the outcome.

Look at me.

I AM THE OUTCOME.

A mother who loves her baby so much that she has destroyed herself trying to protect him.

A mother who would do it all again for him.

A mother who is grateful he is alive.

A mother who is also furious about what it cost.

A mother who is not sure how to come home from this.

A mother who does not know where all her pieces went.

A mother who hopes there is still enough left to rebuild.

I do not know how this ends.

I do not know who I will be when Leo comes home.

I do not know if my marriage will recover.

I do not know how long it will take my other children to believe that I am really back.

I do not know if I will ever stop hearing alarms that are not there.

I do not know if I will ever sleep without checking my phone.

I do not know whether breastfeeding will survive this.

I do not know whether my trust will.

I just know this is what it has felt like to live it.

This is what it has cost to be Leo’s mom.

And today, I need someone to know the truth.

All of it.

The NICU saved my sons life AND took mine from me.