written by: Nathan Marley – Asami’s daddy

(versão em português)

I want to tell you about my daughter, Asami Opal Marley, our morning beauty 朝美.

She’s the most amazing, beautiful thing I’ve ever known. The most precious baby girl. Her cries are so silent, she is such a quiet baby.

Asami has the most beautiful big blue eyes and long eyelashes. She is very present and alert, like she has been from the very first day of her life. She will lock eyes and just stare up at you. If a stranger is around, she’ll always look over at the them, then look back at mommy or daddy, checking to see if we are there and if this person is ok. She raises her eyebrows in a most peculiar and funny way.

If she ever sees either me or Brittany crying, she’ll get sad herself and start crying. :D She always has eyes for daddy. She loves her mommy and daddy, and brother Benjamin and sister Soraya, so much!

When I get home from being away, I’ll smile real big for her and say “Hi baby! It’s daddy!” and she’ll see my face and my smile, and she’ll smile real big herself, a big happy gummy smile (no teeth yet! :D).

Summary

I’m sitting writing this in Little Rock, Arkansas. The last few days have been a whirlwind for me and my family.

This news will come as a huge shock for anyone who knows my family and I, and anyone who’s ever met our precious Asami Opal. Our baby girl went to be with the Lord on Tuesday evening, December 19th at around 6:45 PM. She died peacefully in Brittany’s and my arms. She was 7 months old.

Please don’t be upset if we haven’t told you about her situation yet, or if you only got a short update about her being sick, even if we consider ourselves close friends. It’s not that we didn’t think about you or everyone else that Asami has touched with her beautiful presence. We just didn’t have time. Also, please don’t take it personal if we haven’t reached out to you personally to tell the news. Asami has touched so many people, and it’s such a heavy and hard news to deliver, every time.

Everything has been a whirlwind of emergency room visits, ambulances, doctors and just trying to take care of our sick girl. It all happened so fast.

But now, we have all the time in the world as our precious girl is in heaven, laughing and dancing and spinning around in the sunshine in fields of lavender wearing her purple dress. We have time, and I feel like it’s my duty to share her story with the world.

Asami came to this earth for a purpose, and I believe part of that purpose is to bring people together and to soften hearts. I don’t think we’ll ever know the full extent of her purpose or the full reach of her impact on this world. And she completed her mission so well.

She’s softened her daddy’s heart and taught him the importance of kindness, because you never know what the random people you see on any given day might be going thru. She’s brought us together with the girl we saw today, randomly at a store miles away, that we initally met at the hospital last week. She’s helped bring together all the family that we love but rarely see, and she’s taught us to focus on what really matters in life, people, family, relationships. Being kind.

She completed her work, but our purpose here on earth continues, and I would be disrespecting her if I didn’t share her story with the world. That’s my purpose. At least part of it, and it’s current my mission right now.

Overview

Asami got sick with RSV last week, and also bacterial pneumonia. We didn’t know it at the time, but apparently she had a congenitial neurological disease that she was born with and we simply didn’t know until now. After x-rays, testing, and consulting with many many specialist doctors, we discovered her bell-shaped chest, extremely low muscle tone, and later, some heart issues. I believe the heart issues were ultimately the final deciding factor in her death.

If you’ve picked up Asami in the past few months, you might have observed her rib cage kind of sticking out forward, a bit more than you would expect for most babies her age. You would also have noticed her weak neck, that she couldn’t really hold her head up very well by herself. You definitely would have noticed that she wasn’t able to sit up, roll over or really move her legs much at all, which is not typical for a baby of 7 months. Now that we got these diagnoses (or at least what we have so far), things start to fall into place. She just wasn’t destined for this world for long. She has other missions to accomplish. I’m so grateful she chose us, that she chose our family to join for her short period on earth.

So, after discovering the RSV and later underlying neurological issues, she was just struggling to do everything her body needed to stay alive. She was able to live with support for a few days but her body, weak muscles and heart just couldn’t keep up. She stayed on and gave us about 5 extra days with her, and we are so grateful that she held on for so long. It was so hard to watch her struggle to breathe, with her small, irregularly shaped chest (due to muscle issues) and her abdominal breathing. Now we’re grateful that she let go and is able to rest, and is no longer in pain or suffering.

A Timeline

On Thursday December 14th, Asami woke from a long 4-hour nap at around 5 or 6 PM with really labored breathing, and she looked strange. We weren’t sure what was going on. We monitored her and she seemed to get better thru the night, and was breast feeding throughout the night.

The next morning, early morning (Friday) she seemed ok initially, so we were a bit releived but still monitoring closely. But by mid-morning she was struggling again and we were worried. I left work early and we took her to an urgent care clinic. The doctor said to get her to the emergency room immediately.

We immediately ran out and rushed her thru traffic to the emergency room at Northwest Hospital in Bentonville. We found out she was abdominal breathing and was struggling to get oxygen. They gave her a breathing treatment which helped stabilize her. They tested for Covid and RSV. She came back RSV positive. But we had to rush her to the children’s hospital in Springdale where they could care for her better. Northwest couldn’t continue to help at that facility. We got an ambulance to the children’s hospital.

At the Children’s hospital in Springdale, they put an IV in her arm and gave her oxygen (oxygen might have started in Bentonville, can’t remember). The doctor almost immediately said she needed to go to the ICU in Little Rock, so just a couple hours later Asami and Brittany were en-route to the Arkansas Children’s Hospital via ambulance, and I rushed back to Bentonville to pick up our other children, Soraya and Benjamin.

The ICU period is a bit of a blur. They drew blood for tests a few times (’til we made them stop), and they gave her respiration treatments, (CPT aka “Pat-pat” and Albuterol) every 4 hours. She liked the pat-pats and usually fell asleep during that part of her treatment.

Eventually they put a feeding tube thru her nose and into or a bit past her stomach, because of the risk of aspiration. Asami had never had formula but needed nutrition, so Brittany had to start using a pump to feed her via the tube.

On Monday, late afternoon, we had an echocardiogram done, which is like an ultrasound for the heart. The cardiologist immediately reviewed it and came and told us some more bad news. Her left ventrical was moderately collapsed and her right one was severely collapsed. It was at this point we knew that we would lose her.

We’re not sure the reason for the heart issues, but the cardiologists said that it doesn’t look like something that developed from a virus, but looks like something she’s had for a while. It could also be related to her low muscle tone in general.

They sent off for a genetic test, initially for SMA but then broadened for other things. The cardiologists also asked to broaden the genetic test for some heart things they wanted to check, which of course we agreed with.

Just a bit after this she had other issues where they had to bump her oxygen back up and use more Albuterol because she just wasn’t doing well without support. We changed rooms and our outlook changed to “end of life / comfort care”. We just didn’t want our baby to be in pain anymore. We had a few hours to say goodbye. Brittany and I took the night for ourselves, and then started calling our immediate family in the morning. We wanted to give our immediate family that knew Asami the chance to say goodbye, either via video chat or in person. Our family in Bentonville rushed down to Little Rock to see our precious angel in the final hours of her life, then everyone left around 6 PM to give me and Brittany time to say goodbye just by ourselves.

We held her in our arms as she took flight, and at 6:44 PM she took her last short breath, her heart stopped beating, and she was gone. Our baby is free of pain and suffering! She is finally at peace.

Aftermath

This doesn’t feel real. It feels like a bad dream that I can’t wake up from. Asami is always there. The pain is always there. But I don’t want to shove it down. I don’t want to forget our precious girl, just to avoid my own pain. That would be selfish. I love her so much and always will. She will always be a part of our family. She will always have her own stocking on the mantle and her own tree ornament at Christmastime, and her own area of the house with her things and photos. She will have her photos in every room of our home. We are still a family of 5, just that one of us isn’t earth-side anymore.

Losing a child is the hardest thing for anyone to experience. It’s every parents’ worst nightmare, and if you are a parent I know you will agree. A parent would do anything to save and protect their children. The pain is indescribable. Losing a parent or other relative is also painful, but losing a child is against the natural order of things. Parents shouldn’t have to bury their babies. Babies shouldn’t get sick and die. It’s just wrong. It feels wrong.

If I could have taken Asami’s place, I gladly would have. Anyone who knows her would have. But unfortunately there are some things that even daddy can’t do.

If you know me or Brittany and we run into each other, please don’t try and avoid the subject for our sake. It’s easy to do to avoid awkwardness, but we don’t want to push the pain down and avoid talking about Asami. She is the best thing that’s ever happened to us, and we love her so much. She is our favorite subject, and we want to talk about her. We will probably tear up a bit, or a lot, or sob uncontrollably, so you can expect that from us. But it will pass.

My family and I want to thank everyone who’s been with us on Asami’s journey thru this life, in every way, big or small. Thanks to the doctors and nurses and all medical professionals at the hospitals helping our precious baby. Thanks to all our friends and family, near and far, for your love and support. Thanks to everyone else that’s touched our lives and Asami’s. We would not have been able to get through this experience without you.

My family and I are of course devastated, and always will be. We now have a hole in our lives which can never be filled. But we also have hope, that one day we’ll see our baby again, and we have a mission, to tell her story to the world and see how big her impact can be.

Thank you for being part of our journey. We love you all.

Nathan – Asami’s daddy