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Landon’s Legacy

Landon’s Legacy
October 1, 2015 9 minute read

JULY 10

It’s 3am.

I keep waking up thinking this has all been a crazy nightmare. Just over 24 hours ago we met our baby boy Landon James. After about 8 hours of natural labor I was 8cm dilated. Suddenly his heartbeat plummeted dangerously low, and I was rushed to the operating room for an emergency c-section. But by the time they got him out it was too late. His heart had stopped beating. It took over 15 minutes to resuscitate him and by that time his brain was severely damaged.

No one knows what exactly happened. Maybe his cord got pinched as he dropped lower, they say, but there’s no way to tell for sure. The doctors and nurses seem like they are in as much shock as us. He is still on life support but it’s not looking good. We are praying for a miracle.

The last 24 hours have been more emotionally and physically painful than I could ever imagine. Nothing in my life could have prepared me for this. Part me wants to curl up in my hospital bed and disappear, never have to face the real world again.

But at the same time I’m overwhelmed by gratitude. For my husband and my dad who have been with Landon every moment while I recover. For my mom and doula who massage my body that has completely seized up. For my sister who holds me in her arms at night until I fall asleep, and helps me move and manage the excruciating pain.

I can’t tell where the physical pain ends and the emotional pain starts. I can’t remember what life was like before, I can’t imagine what it will be like going forward. The present moment is too hard to bear. Everything just hurts.

amelia barnes landons legacy

It’s 7 pm.

I can’t believe it hasn’t even been 48 hours since Landon was born. It feels like I’m stuck in a nightmare I just can’t wake up from. Time is moving so so slow. Sometimes it seems that the minute hand on the clock isn’t moving at all.

Nothing feels real. Even Landon doesn’t feel real. I was under general anesthesia when he got rushed to NICU, and he took so long to stabilize that I didn’t get to see him for what seemed like a lifetime. I know he’s ours because he looks just like Justin and me, but it’s hard to believe that this boy is the same one that was so lively and healthy inside of me only a few days ago. I just can’t wrap my mind around how this could possibly be happening.

While today was much harder because the numbing effect of all the drugs in me were wearing off, there were some good things. I got discharged early from the Women’s hospital so I could move to the neonatal intensive care unit (NICU). Justin and I got a beautifully furnished room, with even a king size bed, that’s reserved for the parents of the most critical NICU babies. I’m able to spend more time with Landon now that I can sit and even and stand longer, and I’ve been pumping colostrum and using it for cleaning his mouth even though he can’t eat. I even got to change his diaper since he passed his first meconium today! I never thought changing my baby’s dirty diaper could be the highlight of my day, but it really felt good to be able to do something that made me feel at least a bit like a normal mom.

Justin suggested maybe we could try to use this experience to help others going through similar things. It makes me feel a bit better writing about what is happening and knowing that so many people are thinking about Landon.

The hardest thing right now is not being able to hold Landon because of all the tubes he is hooked up to. It just feels so unnatural, so wrong, to be separated from him. He has been a part of me even since he was conceived. I feel like a terrible mother, like I’ve abandoned him in a way. Is he scared? Is he suffering? Is he sad? I don’t know. But it breaks my heart knowing I can’t do anything to help him.

The doctors told us today that not just his brain, but his heart and kidneys are failing too. It’s really just the machines keeping him alive now. We don’t have much time.

Seeing all the other babies around us in the NICU that are crying and kicking and breathing hurts so bad. Even though they are sick they will most likely eventually go home. Landon will never cry, open his eyes, wiggle his little fingers and toes, or even take a breath on his own.

It’s just so fucking unfair.

amelia barnes landons legacy

JULY 12

Well it looks like miracles do exist after all. Last night when we took Landon off life support we were told we would have a few seconds, maybe minutes with him at best. We got a whole 17 hours.

It could have been the worst nightmare of our lives, but in some crazy way that I don’t think anyone in the world could understand unless they’d been there themselves, it was actually the most beautiful thing I’d ever experienced.

With the help of the incredible staff here at the hospital, we were able to spend our last night and day with Landon just as we’d hoped. We knew he had no more brain activity, and the rest of his body was quickly fading. He felt no pain, but it would take some time for his body to pass.

We got to bring him to our bedroom and spent the whole night with him, as if he was home with us. We cuddled and kissed every part of him. We decided his feet and ears and lips were like his daddy’s, and his nose and cheeks and hair were like mine. We told him about all the fun things we did when he was in my belly, and what we had hoped to do if we’d been able to bring him home. We told him about Cody and how we wished with all our hearts that they would meet. We talked about what we were going to do over the next few months to grieve and stay busy. We ate homemade soup my mom made and I pumped a ton of milk since I’m a fountain now (which I’ve decided to donate to a baby in need). We laughed, we cried, we kissed, and we took a ton of photos.

Before this week neither of us had ever seen birth before, and neither of us had ever seen death. These things are usually hidden and feared in our society. But Landon taught us not to be afraid of either. That’s something people look their whole lives for and never find. So in a way he was our little miracle.

amelia barnes landons legacy

My mom took this photo the moment Landon was placed on my bare chest for the first time. It was also the moment he took his last breath.

It’s strange to see me smiling. How did I manage to smile the moment my son slipped away from this world? Thinking back I remember feeling a deep sense of relief. During the 17 miraculous hours Landon spent with us off life support, we never knew if his next breath would be his last. In fact, many times his breathing stopped and his colour changed, and we were sure he was gone, but then the little guy would starting breathing again. Each time, his pudgy hands would squeeze my fingers, not consciously, but as a result of the stiffening of muscles that happens when you die. It was hard to see at first, but once we understood that he wasn’t suffering at all, but simply preparing his little body for the eventual transition, we were able to relax and just really savour each moment we had with him. By the time the next morning came around and he was still going strong, we were even able to find humour – we joked that he was being a little trickster like his Dad, making us all believe he was gone and then – “Just kidding!”.

But although those hours of waiting were precious and miraculous, they were also agonizing.

It was so hard watching him struggle to breath, knowing that there was nothing we could do to save him. I felt so completely powerless. I had tried so hard to protect him and keep him safe for nine months inside me, and now there was nothing more I could do but hold him and wait.

amelia barnes landons legacy

I think the hardest part of dealing with the situation of having our baby on life support for those three days was not knowing how much, if anything, he felt or sensed. I could never know if he heard my voice, knew my touch or my smell, or if he longed to be in my arms just as much as it broke my heart not being able to hold him. I wondered if he wanted all those tubes and needles out of him. If he suffered at all. The doctors said no, he has virtually no brain activity left – but how can anyone really know?

I am so grateful that Landon chose to show us that yes, he was there – at least in some small way. During the minutes, then hours, that followed after he was taken off life support, he waited patiently for the perfect time to leave. He gave us a whole night just for Justin and I to cuddle and kiss him. He gave us a whole morning to marvel over his precious body with sunshine streaming through the windows, and the chance for some of his close relatives to hold and cuddle him.

By the time my sister, who is a NICU nurse and very passionate about the importance of skin-to-skin, insisted we un-swaddle him and laid his little naked body on my chest, I was ready to let him go. I didn’t want him to suffer anymore, trapped in a body that no longer functioned. I wasn’t afraid anymore. The moment his skin touched mine, I could feel him completely relax. “Let go”, I told him. “It’s OK”. His soft breathing slowed and soon stopped. His strong heart faded away.

At that moment I knew he was at peace. He wasn’t afraid either. He was ready to go. It was the most beautiful thing in the world – I realized that he just wanted to feel like he was back in my womb again so he could finish his journey. I guess maybe he did feel safe and protected. At least that’s what I hope.

Sincerely,
Mama

amelia barnes landons legacy

this is an excerpt from Amelia’s book Landon’s Legacy, available as an e-book and in print soon. Follow her blog and Instagram for more details on how you can purchase the full version. 

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