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- HIElights of Hope
I’ll forever go back to the day I found out I was pregnant – scared; nervous and terrified to have my first baby. I wish more than anything I could rewind my life to that moment and be as naïve as to what could happen as I was back then.
I had a picture-perfect pregnancy. Everything went smooth, at least as smooth as you can ask for it to be, until it wasn’t. I carried our sweet Jackson to 40 weeks and 3 days and was then induced. Mistake number one? Maybe, but we’ll never know.
Jackson was born on February 21st 2019… Dead. He had NO heartbeat. Nothing. He was gone. He didn’t cry. They had to resuscitate him. My now husband got to meet Jackson before I did. They came back to talk to me about what was going on with Jackson and were given a few options including pulling life support and not giving him a fighting chance.… I hadn’t even SEEN my child yet.
I lost it.
How can you possibly be telling me to let my child die and I haven’t even met him yet?
A while later he was sent on life-flight with my husband and I was released four hours after giving birth to drive two hours to be with them at the children’s hospital. We got there a little after midnight, found my husband where doctors had been questioning him about what had happened and trying to get Jackson stable. I touched my baby – and was basically told “You just gave birth – go get some rest. He’s stable enough and we’ll talk more in the morning.”
The next few days were a blur. HIE was explained to us, how it happens and what it means and entails. Jackson was cooled for 72 hours and we could put our hand on him but couldn’t hold him. He had EEG’s that showed next to no brain activity. Even on cooling – not exactly what we hoped for. But maybe things will change?
After a long 4 days I finally got to hold my son for the first time. I cry as I write this – because I still feel it like it was yesterday. I remember finally FEELING like a mom to a child I had carried for the last 40+ weeks. Feeling his skin against mine was the most calming feeling. I didn’t get to hold him long because he was still running an EEG machine because he was of normal temperature and they had to do a comparison to the previous EEG.
The next few days of testing and holding our son were yet again ultimately a blur. Wake up.. go to NICU, love on Jackson, sleep, eat and repeat.
Day 5 was MRI day.
On day 6.. we had a care team meeting scheduled for that afternoon. I sit here writing still in tears as I remember that day perfectly. They had brought a photographer in to do family photos of all of us and I remember clear as a day a nurse walking in and saying “Results are back – SEVERE global damage.” Well, so much for the “happy” family photos we were supposed to get. All you see in those images now are utter pain as I’m beginning to realise my son isn’t going to live.
The meeting.. as terrible as you think it was.
Jackson wouldn’t walk, talk, he would be blind, and he would need a tracheostomy and he likely wouldn’t breathe on his own without a vent.
We discussed what life would look like for us – and what life would look like for Jackson if we decided to keep up with what we were already doing. Shelby and I asked for a few days to sort through our emotions and have conversations and really.. more time. How do you make a life or death decision on the spot? Especially for your own child you’ve known for 6 days.
Life goes back to a blur. I know they started those “memories for later” projects as I like to call them. Art projects, stories, hand prints, foot prints.. Castings.. all the things.
On March 1st – I remember our favourite doctor, Brook – coming in and telling us she needed to have an upfront conversation with us. Essentially she said as a doctor she can’t understand how a parent can put their children through so much when they know the outcome, but that as a parent – she understood that sometimes those life choice conversations need to come across different. We talked more about the life Jackson would have. The life we would have caring for him. And ultimately Shelby and I agreed that at the end of that day we would pull Jackson’s life support; knowing he could then pass at any time. We signed DNRs. The pain in my chest right at this moment typing this is still as real as that day and being the one who had to say “yes you can remove his vent” as I was holding my then 8 day old baby watching them take his life support away.
We had a photographer in the room next door to take family photos of us as we didn’t know how long we would have Jackson with us moving forward and we wanted some pictures without tubes and his vent.
The next day we spent cuddling Jackson and honestly feeling like parents. He held on and man did he fight. We talked; we laughed and we just enjoyed him. We took so many photos and loved every one of his little sounds and hiccups knowing the end was lingering.
On March 3rd; we had our family bring our dog up from home. I wanted my family together and I wanted a full family photo. Bentley knew immediately who Jackson was and loved and kissed him instantly. I’ll forever be thankful to the staff that allowed this moment to happen for me and my family as I will forever remember it fondly.
We went back to our room in the NICU that day and Jackson took a turn, immediately as if meeting Bentley was him almost saying “I know mom and dad will be okay.”
We watched that day as the color left his skin. Knowing the end was close. We ate dinner and I remember my mom leaving that evening with tears in her eyes as she went back to the hotel with a “knowing” that she had just kissed her grandson for the last time.
I called the doctor in at one point because his breathing was the most shallow it had ever been, and she confirmed his time was here and she and the nurse left. I held Jackson tight. Too tight maybe. With my husband behind me as we talked to him and promised him that we would be okay and that his dad and I would fight to stay together and would keep his memory alive. We told him it was okay if he was ready to go and that her would feel better soon.
More than anything – I remember feeling his last breath leave his body and just knowing he was gone and calling the time on the clock myself March 3rd, 2019 10:27 pm.
Dr Brook came back in probably about a half an hour later and confirmed. I told her time of death and that’s what went on his death certificate.
We kept Jackson with us for a few more hours while we waited for the funeral home to come and take him. We packed our things and I kept Jackson on my chest. It was the most peace I had felt in 10 days and what a weird feeling that was. I still can’t describe it to this day because I honestly haven’t felt that peace since.
The funeral home showed up and I remember wrapping my sweet Jackson up in a blanket, kissing his face, telling him I loved him, and handing him to the nurse as she walked away with my baby.
We never saw him again.
My mom offered to drive us to the hotel but I said I needed to walk. Talk about the most lonely walk of our life. We walked to the hotel in silence, hand in hand, uncontrollably sobbing in negative 10 degree weather on ice.
From there started a whole new life I never imagined. Shelby and I signed papers at the funeral home the next day and we took off to the coast to be at the ocean and try to find some peace for the next week without anyone able to ask us questions or make us relive what we had just went through. It was honestly the best decision we could have made.
Jackson was cremated and the day we picked him up and brought him home was calming. I finally got to bring my baby home – just not in the way a parent would hope to.
For the last 3 years now – we have been on the grief journey. Days were hard and nights were long and sleepless for a long time. It felt like everyone’s worlds went back to normal and ours were stuck. I was mad – heck, I still am mad. How is this my life?
In our HIE groups, I had received 50 messages probably and I hardly responded to any of them because it was just too hard. But for whatever reason I responded to Ashley Stremer. She and I hit it off as she had lost sweet Peyton Rae Hope Stremer to HIE just a month before Jackson was born. Our stories were similar and while she had a wonderful 7.5 months with Peyton – I just felt so connected to her and her daughter. I swear to this day she’s part of the reason I am still here because of how much we talked for months on end. All this time later and we are still friends and she’s going to be one of the Maid of Honor’s in our upcoming wedding. She’s my heart person; and I love her daughter Peyton as if she was my own, even though I never met her.
Grief is like an ocean. You hear it all the time but honestly it is. The waves come and go and they wash over you. Sometimes you’re treading water – somethings you’re drowning with no air. The HIE Loss Support Group is amazing – and so full of support and love. My heart shatters every time a new parent is introducing themselves and telling their story to the group as what we’ve all gone through you can’t even begin to imagine.
But our children’s legacies live on.
They live on through us, as their parents. Because sometimes that is all we can do. I talk about Jackson as often as I can. I include him when people ask how many children I have – no matter how uncomfortable it makes the other people feel.
In the hospital with Jackson, they gave us a recording of his heartbeat in a Mickey Mouse build a bear and that Mickey now wears Jackson’s first outfit and goes everywhere.. I mean EVERYWHERE with us. It’s like I’m bringing Jackson with us on vacation. He’s been to Disneyland, Hawaii and he even went to Colorado as ring bearer in my sister’s wedding.
To honor Jackson and his memory and help other families out, we started a non-profit organization helping out fellow NICU families with NICU survival kits for both moms and dads. We do awareness walks as well as fundraisers each year with Jackson’s name and cute face plastered all over the place.
Ultimately the biggest fear of a loss parent is people forgetting our children – people not talking about them anymore. I want more than anything for people to ask me about Jackson all the time if for no reason other than I can talk about him.
We have his footprints on our forearms and it’s my favorite thing when people ask about him and how old he is. His little sister’s foot prints are right beside his and I get to talk about both of my babies.
Isabella came into our lives during COVID shutdowns. Pregnancy was terrifying but she’s the light of our lives and I know for a fact that Jackson picked her and sent her to us when he knew we were ready. Ashley (mentioned earlier) made her a book all about her big brother Jackson and Bella reads it often. She knows where his case of memories is and touches his hand and feet moldings often and she’s very picky about who gets to touch and hold Mickey.
I often get guilt that this isn’t how our lives should be. This is not what I ever imagined my life being and even three years later there’s still days I’d trade a lot of things away to be able to actually hold Jackson again. The thought of maybe seeing him again someday is what keeps me going – along with the fact that I KNOW he sends us signs when we need them most. He sends us feathers in the most random places, he shows up to my sister in the form of a butterfly often and I know he’s the reason that Bella giggles often in her sleep or talks to the corner of the house that has nothing in it.
I could type for the rest of my life about Jackson. I could almost tell you how many hairs were on top of his perfect little head. However I know this has gotten to be long enough – and there are other stories to read from other parents. If you are a family member of someone who is dealing with HIE – just know my family and I send our love.
To the doctors and nurses – please remember to help and love these families every step of the way and that sometimes taking the “doctor talk” out of the equation is all we need as parents in this scary world.
To Jackson’s Team specifically .. You’re all amazing. You’ve touched our family forever and we are forever thankful to call you guys “the family we never wanted to have.”
To Isabella – I promise to always tell you about your brother and make sure you know how much your big brother in heaven loves you.
To my husband, Shelby – I promise to continue holding up the promises we made to Jackson to keep our family together.
And to my sweet, sweet Jackson – I’ll continue talking to you forever until I can hold you again in my arms. Keep sending us signs and know that your mom, dad, sister and dog brother love you forever and always to the moon and back a million times over.
To YOU who managed to read the entire thing.. Thank you for sharing in this piece of our life story. I wish you a wonderful rest of the year, but honestly THANK YOU for letting me share Jackson with you because I don’t get to do it enough.
Codi Ward; Jackson’s mom
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