Friday, December 1, 2023

365 Days in the ICU

I don't often share the details of our journey unless I think they might help someone else. Mostly, it's because there is a lot to recount, a lot to digest, too much reality for some, or just too personal.
Sometimes, it can be healing to share.
A year ago, today was one of the worst days of our journey. I decided to write it down so, on the difficult days, I can be reminded of how far God has brought us.
On the evening of November 30th, 2022, I was leaving Cohen's room to do a child swap with Todd. She needed to get to gymnastics practice, and he was waiting in the car. To my surprise, Cohen's primary doctor and both primary surgeons were sitting outside his room. It was apparent that the conversation was not going to be quick or pleasant, so I sent my daughter back into the room to wait. Cohen had several immediate issues: his inflamed appendix needed to be removed, he had a fungal infection from his central line that required the line to be replaced, and his pancreas was filled with sludge and stones. Furthermore, they wanted to perform all of these procedures in the morning. There are so many details that need to fall into place when Cohen goes to the OR that there has been an unwritten policy to avoid "add-on" trips at all costs. None of us felt great about deciding this at five in the evening, but everyone agreed that it needed to be done.

Cohen was already experiencing breathing issues, requiring 2 liters of oxygen and trialing bipap at night. On the morning of December 1st, I had a sinking feeling in the pit of my stomach, a feeling some refer to as "mama's intuition." I felt the need to take lots of pictures and videos while holding onto his hand. The morning seemed to drag on forever as we anxiously waited to hear when they were ready for him.

We were so excited to discover that we had one of our favorite anesthesiologists. During our huddle, I shared that things were a bit different, and Cohen now required supplemental oxygen. After the preop time out, Cohen and I did our final prayers, hugs, and goodbyes. Not knowing that hours later I would replay those moments over and over again in my mind, desperatly trying to relive every second while begging God for the opportunity for more. 

The girls and my mother-in-law came to wait with me that day. We were up in his room, and I was busy with my usual nervous tasks when my phone rang. I had only left him thirty minutes ago for what was scheduled to be a lengthy procedure. When I saw the name on the caller ID, my heart sank. It was our primary surgeon. "Carrie, where are you?" The memory still echoes in my mind. He told me to wait there and said that he was coming to see me. You don't have to have ever had someone you love in surgery to know that whatever he was coming to tell was not going to be good. I paced the halls of our unit, waiting for what felt like an eternity. Word quickly spread that I had received a call, and our primary nurse practitioner met me in the hallway.


Minutes later, our surgeon and anesthesiologist appeared from around the corner. I remember thinking, "Why are both of you here... Who is with Cohen?" My brain wouldn't allow my heart to piece together the details. Suddenly, as if she had appeared out of thin air, our primary doctor, Stella, stood beside me and directed us to an unoccupied patient room. I don't know when others joined us, but I remember scanning the room and suddenly seeing it filled with nurses, child life specialists, and attendings. I don't know how to explain it, but it feels like all my nerves are exposed, allowing me to perceive and experience words and sounds as they surround me. Someone suggested calling Todd. Stella reached for the phone, recognizing that my hands were too shaky.

"Cohen immediately got into trouble when we brought him back into the OR, and we had to call for help." They went on to tell us that they struggled for a while trying to re-establish his airway, but they were finally able to place a breathing tube with the help of the Critical Airway team. At that point, he was too critical to undergo the surgery and needed to be transferred to the ICU to be reevaluated before the possibility of surgery could be reconsidered. We have always asked them to be honest and transparent with us, and this was not the moment to sugarcoat anything. They went on to say that it was an incredibly dangerous situation, and they were extremely concerned that if the tube accidentally came out, they would not be able to reinsert another one. The tube was very fragile due to his severe allergies, so they could only use ties instead of tape to keep it secure.

All I wanted to do was to see Cohen and hold him, but they needed to stabilize him in the OR before it would be safe to transfer him. Our team wanted to get back to him so they could provide us with a better update. Stella went to talk to the girls because I was too upset to return to the room and see them. I didn't want them to witness me so upset. She shared a portion of the news with them, delivering it in her remarkably gentle manner. After taking care of me and the girls, she informed me that she was going to check on Cohen and promised to update me soon.


Waiting again to be told that I could be with him felt like torture. Our NP decided to take me down to the ICU and find his room ourselves. We went to the wrong wing, and when she asked the HUC where his room was, she informed us there was a code in the OR and didn't have any other information. Her words felt like a thousand blades, cutting me open. About that time, our NP's phone rang. It was Stella asking her where she was and that she needed her. As she rushed off to find her I suddenly found myself alone in the waiting area, experiencing a type of fear that I had never known before. Waiting once again for any sign that my sweet little boy was alright. After about twenty minutes, I texted Stella that I was scared and needed to know if he was okay. A minute after minute went by with no response, and my mind began to let my heart in on the details that were now enveloping me like a tsunami. Frantically, I called Todd, barely able to form words through my sobs. "I am so afraid he is gone!" Is all I could repeat. He turned his concern to me and tried to calm me down while he navigated through traffic.

Still alone in the waiting room, thirty minutes passed as I endured the anguish of believing that we had lost him. Finally, our primary child life specialist, who had been called to come to me, came around the corner waving her hands. Knowing that the sight of her presence would immediately provoke more fear, she attempted to signal that she wasn't there for "that" reason. Although she didn't know his exact condition, she was aware that he was still alive and that efforts were being made to transfer his care to the ICU team. However, it was a challenging task. She sat with me as I began to settle. We even managed to find some peace in looking at his silly videos, laughing and crying together.

Soon, members of his team began trickling out to me, Stella, and our NP, and then Todd arrived. 

Our incredible anesthesiologist even joined us in our decompression circle. Everyone sat on the couches, which I now pass daily, feeling drained and trying to process the events of the day. We discussed what had happened and contemplated our next steps. Our anesthesiologist probably felt the weight of it all the most. I could see it in his face and hear it in his voice. He was upset, revealing to me that during the code he had feared that we were going to lose him. He shared with me that he kept talking to "his buddy," reassuring him that he could do this because he was the strongest little boy he knew. It was apparent how much Cohen had impacted the lives of these individuals over the years and how deeply they cared about him.


Once reunited with Cohen, I immediately slipped into my role of overseeing the important details of his care. I had no way of knowing that in just a few days, another day would rival our worst nightmare ever, when he would code for a second time. Maybe one day, I will feel up to sharing the details of those difficult weeks that silently unfolded into a year.

Perspective was the greatest lesson I learned throughout this year. In the weeks leading up to November 30, 2022, I had been pleading with our care team to allow us to go home for Christmas. But on December 1, 2022, I was just grateful that Cohen was alive and that our family had the opportunity to celebrate another Christmas together... I no longer cared where we spent it!!!

So, the answer to the age-old question, "How do you keep doing this, Carrie?" is because I came too close to not having the opportunity to do it anymore.

Because he continues to do it, therefore I can too.
Because not doing it means not having him.
Because I know others who would sacrifice their own lives to continue doing it for their child.
Because he is worth it!!!


Cohen's name means "priest; giver of God's word." We didn't realize the meaning when we gave him that name, but God knew. His middle name, Isaac, means "one who laughs and rejoices." And though I have never been one to care much about the meanings of names, I believe that these names must have been divinely chosen for him. When Cohen was born, a dear friend told me his name was a good and strong one. I had never thought of it that way, but I couldn't agree more. Every day, he proves that he is more than worthy of them.

Please. Do not feel bad for us because we have spent 365 days in the ICU out of our 495-day admission. Instead, be grateful with us that this child has the opportunity and determination to continue fighting. Most importantly, he has the potential to make a difference in the world while doing so.




your photo name

Tuesday, August 28, 2018

Dear God

Dear God,

He is so little. I will never understand why some people are born with broken bodies while the rest of us enjoy the freedom of properly functioning ones. It hurts so much to see him suffer. How do I trade places? Why can't I take on the broken body for him? The pain of watching him struggle is unbearable at times but what is worse is knowing I am helpless in taking it from him.

When does our mountain move, our storm stop raging, and the sails fill with wind again? I know you are there and I know you are good, but this doesn't feel good. I believe you can speak a single word from your lips and make this all go away. I trust your ways are pure and I know you hold our future but what about today. 


Today hurts.  

Patiently, we wait for your plan to be revealed and your work to be made clear. I know that greatness waits for him on the other side of this journey but right now I can't see it through the raging storm.

Where are your angel armies? We have surrendered all to you and we humbly wait.
You are God, even the wind obeys your command. Yet you choose to let it swirl.

And somehow in the midst of this place I find peace, the peace needed to wait on your timing because I know you are never late.

With all of my pain and with all of my desires I still speak through the storm and say, 
Not my will but yours be done. 

Words that cannot yet leave my lips but are spoken to you through the voice of my heart. I don't know how to face tomorrow without you and I accept the peace that comes with knowing you are already there. 

This is my child whom you created. Although, it is hard to conceive I know you love him deeper than I ever could and that his suffering must bring you great pain.

We are ready Lord and we eagerly await you. 

Sincerely,
Your Child



your photo name

Sixteen Years Ago I Found My Calling

It didn't go the way I imagined it would. I had spent months... no years, envisioning the day that I would become a mother. He was the first grandchild on both sides and the anticipation for his arrival was immeasurable. We had been doing all of the typical planning and preparation that couples do prior to the big day. There was the usual building up of excitement for the pending debut of this little buddle of joy, but this child had some added pressure.


His paternal grandmother had just been diagnosed with breast cancer and began her aggressive treatment two days before he decided to make his grand entrance. This would be the much needed distraction and blessing we had needed in the midst of that difficult time. But as if that wasn't enough... he also decided to arrive on a very special day, the birthday of my sister, Theresa.

Theresa, was a special blessing herself, but one that we only got to hold on to for a very short time. My sweet little sister was born with a congenital heart condition which limited her life to only eighteen short months here on earth with us. It was a special gift to have my first little one share her birthday but we soon found out that they would share more than just a special day,

It was a long difficult delivery but that all instantly disappeared the moment I held him for the first time. My joy must have cast a shadow over any looming concerns that the medical staff may have had upon his arrival. This sweet boy, named after his father, was perfect... at least through the focus of my eyes.

It wasn't long before we were made aware of the medical teams concerns, "His heart isn't pumping fast enough and we aren't sure why." Those words came across my mind in slow motion as I looked at the caring hand of my nurse, now resting on mine. Suddenly, the reality of my current moment and my parents' past journey with my little sister, came colliding together.

This child was supposed to be the bridge between the pain of the past and the healing of today. Born on her birthday. A tribute of her life in the form of a beautiful gift of this brand new life.

 Her heart. His heart?

There couldn't have been a more difficult statement to hear in that moment.

Those first days of his birth were not the ones I had envisioned. I wasn't supposed to see somber faces looking at my child, I wasn't supposed to be crying tears of fear for his life, and I wasn't supposed to leave the hospital without a newborn. For the first time in my life I understood the depths of a parent's heart and the extent of what they would go to in order to protect their child.

But what I remember most from that time of uncertainty was the comfort I found in my husband and his words of faith which carried me through those days. His reassurance that we could do hard things with the hope of our God and His promise to lead us through the valleys.

It was the first time in my life when my faith was tested to the core. God did not leave us nor forsake us during that time.

In all of the confusion of those days one things stood true and unclouded, this child was mine. The love that poured out of me was something I didn't even know was possible. The instinct to care, love and protect this little child was the driving force for every breath I took from the moment he was born.

This is not the beginning that I would have chosen for him, but it is the one we were given. Although, I can't say the fearful memories of those days have faded, I can say that my clearest memories are of the faith, hope and love that surround us during those days.

That same heart that was once deemed broken now holds more love and compassion than I have ever seen in someone so young. His generosity and concern for others is contagious, you can't think of him and not smile. His spunk, humor, and sheer presences leaves you feeling better for having spent time with him. I am so blessed to have been chosen to be his mother and have a front row seat to watch him grow and bloom into the incredible young man he is today.

Sixteen years of having the privilege of being on this amazing journey with my sweet boy.


Todd Christopher, thank you for making my dreams come true by giving me the name, mommy. I am so amazed by the wonder of your incredible imagination, your ability to create joy where there was none, and your deep compassion for the forgotten. You are smart, kind and energetic. I know you will someday move mountains. I can't wait to see what God does with the beautiful light that shines through you. Happy 16th birthday sweet boy, I love you to the moon and back.


Happy Birthday to you as well little sister. One day will be untied again in paradise.

your photo name

Friday, March 16, 2018

"Don't worry, you can't catch what I have."





"This is my little brother, he has an illness where he can't eat and has to go into the hospital all the time because he gets sick a lot."

I listened from the other room as an introduction took place between my seven-year-old daughter and her new friend. My heart had become terribly used to a lot of jabs but it wasn't quite prepared for the pain that would come from the next few words spoken.

On the floor in front of them, sat a sweet little five-year-old boy who had become very adjusted to his medical isolation, and apparently, without me knowing had become extremely aware of his own medical condition.

This new friend looked curiously at my son and without missing a beat, he replied, 
"Don't worry, you can't catch what I have."
In that single moment, I was whisked back in time to a scene of me rushing a vomiting toddler out of a children's museum. I could vividly see the gawking parents in the play area, their faces, resembling that of the child which then stood in my living room. That day in the museum had been etched into my memory. I carried my young child in one arm while using the other free hand to catch vomit. As I made my way towards the exit I could feel the piercing eyes of concern from the parents around me. In my need to defend our presence in the children's play area, I defensively began to repeat, 
"You can't catch what he has, please don't worry, you can't catch what he has!"
My instinct at that moment was to free the onlookers of their fear of catching a virus from another child. I have come a long way from that moment in the museum, yet suddenly I found myself transported back to the insecurity of those feelings.

My heart broke knowing my child felt the need to make that same distinction to others. 

"You can't catch what I have!" 
No child should have to make that kind of clarification to someone. No child should have to feel the need to defend their existence that way.

His words broke me... but not him. 
To him, it was just a simple reassurance which he sensed this new person needed.

When did he become so aware? I still see him as a young baby that has no knowledge of his differences. Yet, here he sits trying to comfort others with the news of his illness.

Daily he watches others consume food, something he has never been able to do.

Daily he watches others run and play outside, something his body just doesn't have the stamina to do.

Daily he misses out on bathing even though he would love to indulge in the water that he covets.

Frequently he watches others swim, something he can't be apart of because of his central line and risk of infection.

Often he misses out on life while stuck in a hospital, enduring procedures and fighting infections and fevers.

Yet, he feels the need to reassure others, bringing them comfort in coming to an understanding of his situation. These circumstances have just become his way of life and he has an incredible ability to make the best of it. Never asking,
"Why me?"
Yet, no one would blame him if he did.

Instead he,

...pretends to eat food when everyone else sits down to eat a meal.

...watches through a window shouting funny activities for others to act out while he giggles at their silliness.

...splashes his hands in a sink full of water, while others submerge in a bath.

...drives a motorboat and shoots water guns at the others while they play in a swimming pool.

...turns a hospital room into an imaginary world filled with pirates and dinosaurs, while others continue on with their lives on the outside of the hospital.

How can one little boy endure so much and still find joy in each day? He teaches us that we are so much more than our circumstances. He reminds us that all life has value and purpose, modeling how each of us must choose to find the good and allow it to cast a shadow over the struggles we endure.

Once again this little child has taught me a valuable life lesson. My instincts often lean towards sitting and licking my wounds, dwelling in the sadness of such moments. 

His, however... is to address the concerns of others by giving them comfort and reassurance.
 "It's the best day ever mama."
Words that often follow days filled with pokes, procedures, and tests. 

Words that my perspective would not have allowed me to utter, yet somehow he freely offers them as an attempt to comfort me.
"How's your day been?"  
A question I hear him frequently pose to those he encounters throughout his days. Leaving me to wonder, when's the last time I concerned myself with the goodness of someone else's day?

Perhaps if we all focused on a concern for others and less on the darkness of our own days, we too could redirect our perspective, guiding our own attitudes towards hope and joy.

It sure seems to be working for this amazing little five-year-old boy! 



Once again I am humbled by his young wisdom and pure heart.
your photo name