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Dana R’s Story

We lost our third son, Julian Daniel, after surviving 36 hours at 34.5 weeks gestation. Neonatal demise is what they called it, and oh how those words still send chills down my spine even two years after his passing. Having had a molar pregnancy, two living sons and a miscarriage previous to Julian, I always thought once I made it past the twelve week mark I was “safe.”  I look back and think how naïve I once was, yet also miss the innocence that came with it.

My two living sons had perfect anatomy scans, perfect pregnancies, and perfect births; and only after losing Julian do I see how truly blessed and what a miracle it is to bring home a healthy child.

At 19 weeks gestation, my husband and I went into the anatomy scan still with names bouncing around in our heads.  After all, he is our third son so boy names were becoming harder and harder to pick out. But our minds would soon be flooded from the carefreeness of choosing names, to wondering if our baby would make it.

Fluid was found on our son’s lungs. My heart felt like it had stopped. We were given three options; termination, amniocentesis, or a blood test to rule out any infection. We chose the latter.  Every single thing, other than the fluid, was perfect on our son. We wanted to keep fighting, we wanted him to keep fighting.

From that moment on I would be monitored by MFM every single week to check the fluid; to see if more would come, or if it would disappear altogether. The biggest worry was a medical condition called hydrops; when fluid gets into one or more organ and into the tissue. Hydrops was the thing I feared most as it only has a 5% chance of survival.

At 23 weeks it was shown that the fluid was slowly increasing, and some was now dripping down to his abdomen.  We were advised to have a procedure done to remove the fluid from his lungs so that they wouldn’t be compromised and did an amnio at the same time.

Everything came back negative, except for a PIEZO1 gene mutation that he had.  After further testing it was discovered I was the dominant carrier of this gene and my second living son also had it.  Being that little information is out there on this gene and that my son and I had it with no issues, it was becoming less likely that was the reason for Julian’s lung fluid.

But his lung fluid came back.

He kept fighting.

We kept praying.

As the weeks went by, my amniotic fluid started to rise, and at 34.5 weeks my fluid levels were 50cm and I needed a reduction as it was causing contractions.  The hope was to reduce the fluid so my body would stop contracting; but I didn’t. I had polyhydramnios and 1.6 liters was removed. This sent my body into full blown labor and Julian was born hours later.

On August 3, 2019, 12:28am at 34.5 weeks we delivered our beautiful baby boy, weighing 7lbs 7oz. They whisked him away and immediately began poking him to drain fluid out of his body. Julian was more sick than anyone anticipated.

Our son was born with hydrops.

He had skin edema from his head to his toes, in his lungs and in his abdomen. He fought a hard 36 hours before doctors told us there was nothing more they can do for our sweet baby. His oxygen levels were dropping, and he was losing brain activity.  We then made the incredibly hard decision to take him off everything. The amount of machines and tubes that surrounded him didn’t allow us to see my son’s beautiful face. I wanted to see him, hold him, kiss him, breathe him in. I wanted my son in my arms. And so, in what seemed like seconds, all machines were taken off, the breathing tube was removed, and there he was placed in my husband’s and my arms.

Seconds started going by. They told us it would only be minutes before he took his last breath. I can’t describe the feeling of the race against the clock. I wanted time to stand still, forever. I didn’t want to say goodbye to our third child, we had so much planned for him.  His brothers, who were 5 and 3 at the time, were expecting him to come home. How would I explain to them he wouldn’t be?

My deep howls filled the room. I kissed him, sang to him, put his heart next to mine in hopes that his wouldn’t stop.

Three minutes later, at 12:18pm on August 4th, our son Julian took his final breath.

My life has been forever changed since that moment, for I was now a mother who lost her child.

Since then I have poured my grief into writing.  I currently have eight published pieces in various online magazines including Still Standing, Still Loved, Scary Mommy and Her View From Home. I write for me, for my son, for those who don’t have the words, and those who are willing to learn.

Fast forward, we came pregnant again in January 2021 and immediate feelings of fear, hope, sadness, and joy were all rolled into one.

This time, we were having a girl. Oh, how I feared people would immediately think this was why Julian had to go, that this was the reason, so that we can “finally” have our daughter.

I made sure to let anyone and everyone know that there will never, could never, be a reason great enough that could take away the life of a child.  Rather, he sent her to us, because Julian’s life existed just as hers.

The past 9 months have been a major roller coaster of emotions which have caused me to write new blogs about my pregnancy after loss journey.

But no matter what, the love I have for my daughter, our rainbow, is immense, just as it is for all three of my sons.

Our daughter, Olivia Juliana, entered the world (with her big brother by her side) on September 14th, 2021.

We chose Juliana because it cannot be written without first spelling Julian, and she simply wouldn’t be if it weren’t for him.

So, to my rainbow baby girl, your colors are so bright, you helped pull me out of darkness. Our sweet Livi, you have filled our hearts with hope again.

And to our Julian, you are the driving force behind our rainbow, the reason our rainbow ever got to peak its colors  from the gray skies in the first place. The grief we endure day in and day out is the storm, and that’s not going anywhere because we will always miss you and wonder who you’ll be.

But what I want people to recognize most is the next time they see a rainbow, remember to think about what had to come first in order for it to appear. I want people to remember that the storm is just as important

… as the rainbow itself.

You can follow Dana on Instagram at @thelittlestbrother803.

Photos taken by Melissa Lawless, Russell’s Photography Studio.

Rainbow photo edits made by Ashley Rose-Photography.

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