Nearly… Not Quite (newborn death)

by Tam King

Tam King

We were to walk out of a routine ultrasound shaken to the core with the horrific news that our just 18 week gestation baby would never be coming home with us. Just a half hour earlier we had been innocent parents, excited to see the baby that we had waited so long for. Instead we left in tears, with a handful of referrals and no hope.

Ariana Rose was born on the 1st of January 2010, in severe distress at 29 weeks gestation. She had multiple serious health concerns and was immediately rushed to the neonatal intensive care unit. I was wheeled into recovery with just a blurry photo of her, and a handbag. Earlier that day I had come to the hospital concerned because her movements had decreased dramatically and an ultrasound just two days earlier had shown minimal amniotic fluid remained around her. The hospital staff treated me leisurely until the CTG showed our daughter barely clinging to life and then panic stations ensued. I was raced to theatre and there the beginning of the end of our time with our second daughter began.

The practicalities of juggling a terminally ill baby, a very excited and inquisitive two and a half year old little girl who wanted nothing more than to bring her new baby home and the life as a NICU parent quickly set in. Our families stepped up, baby sitting Lucy every night, taking her to daycare and keeping her life as normal as they could. Matt stayed with me at the hospital, rarely leaving my side unless it was to spend some quality time with Lucy or for some daddy daughter time with Ariana in the NICU while I was recovering. By day three we were thinking that maybe this could be done, maybe we could beat the odds, maybe our girl could fight whatever she was battling.

Less than twenty-four hours later the doctors came to us with a three page document. I felt dread as the door opened. If they were visiting us on the ward, it meant something bad. He sat on the end of my bed and very quietly told us that he was holding something called a “Do Not Resuscitate” order. Ariana was deteriorating; they wanted to know should she be resuscitated when her heart stops. Not if, but when, because her heart was going to stop, it was just a matter of when, and did we want to fight to keep her here. He went through her most recent test results. Her blood results were shocking, she was in toxic shock, her organs were failing, her oxygen requirements were through the roof. Most troubling of all was the multiple brain haemorrhages she had been having. I asked him what he would do, what would he do if this was his daughter? If this was his son?

With tears in his eyes he told us he would stop.

We signed the papers and we asked them to stop. We took our family into the special room they had moved Ariana into, and everyone spent time holding her, crying over her, praying over her and loving her. Lucy held her, sang to her and drew pictures for her. Then she kissed her a special goodnight kiss, and with my parents she walked away from the only sister she would ever have. At a little past midnight while held close to my heart and in my arms our beautiful baby slipped away, and we consciously fell into the world of grief and agony unlike any previous pain we had experienced.

Ariana Rose and her Family
Daddy Matt, Sister Lucy, and Mommy Tam

 The hardest moment for me, ever, in the past two years was cuddling and kissing Ariana for a final time, before handing her to the nurse, and watching the nurse lay her gently back into the incubator. The side was down, because she’d been in our arms for the past five and a half hours. As she put her down, the blanket slid from her tiny foot, and I could see her toes, her perfect little feet laying still and uncovered.

My mind was screaming at me to hold her, to warm her, to protect her from the cold. Instead, I turned away and walked out of the room – the last time I would ever see my baby girl.

What followed was an intense period of numbness. I didn’t mourn our loss immediately. Oh, I cried. I cried and I sobbed and I wailed, but I didn’t feel in my heart the pain that I was expecting to feel after I walked away from my baby, my child who had died in my arms. There was a depth of disbelief that I wasn’t prepared for. I felt callous, cold. I felt a great dislike for myself in those first few days after Ariana died, I wasn’t grieving ‘right’, what was wrong with me, how could I be making jokes with her sister just five days later? How could I go to the hairdresser to get my hair dyed for the memorial service? Shouldn’t I be wearing burlap and wailing in the street? Within a fortnight I found that level of hysteria and agony I had been waiting on. I wished desperately I had never wondered about it, for surely this pain would kill me.

What I have learnt is that you can’t grieve wrong. Hollywood has deeply misled the newly bereaved; grief isn’t screaming breakdowns in the shopping centre for all of us. For some, it’s an intense, private battle with insecurity longing and wanting. For others it’s hiding in bed for days at a time, crying until you vomit. For everyone it’s pain. But we all show it differently. And more importantly, we all process and cope with it differently.

People are often amazed to discover that long before Ariana was ever conceived I was already venting my feelings and emotions and personal discoveries on my blog. The hit rate went up exponentially when I announced her prenatal diagnosis and since that time it has continued to grow and thrive. Blogging has been the one way for me to be angry and to spew venomous pain and hurt without actively attacking those around me who have sought to help me in my hardest and most trying times. It has also been a way for me to process those emotions that some days still threaten to overwhelm me.

Grief never ends. You don’t wake up one morning and suddenly realise that you’re done with grief. It follows you around for the rest of your life, but you learn to manage it, to hold it off, to juggle it or to fit it in where you can. There are days where I know I just need to break down. I am kind to myself, I allow myself to have those days. A few short weeks after starting a new job I needed a mental health day – nothing was going right, I’d had to intervene in the beginnings of a situation with Lucy’s school peers and her talking about Ariana and when I got to work everything was chaotic and I could not do it. Looking back, I should have called in sick long before I ever arrived. Instead, I left it until my boss told me to leave, to take some time, and to come back the following day when I felt more in control.There is no shame in needing those days occasionally. Some days I drag myself out of bed because as much as I feel I want to wallow, to cry and hide, I know it’s best for me in that moment to get up and face this reality. As time goes on, you begin to learn the difference between the days where you absolutely need to break down, and the days where you’re not quite right, but keeping on is the best you can do for yourself. And if like me you mix it up occasionally, don’t be afraid to tell someone.

This new normal of living after a baby has died can be impossibly complicated. Some days, it seems as though we are just like every other family. Other days, when my (now 5 year old) Lucy is crying at bedtime because she misses Ariana and wants to go visit her in Heaven? Those days are awful. They break you down and remind you again that you can never really leave behind the grief.

For whatever reason there may or may not be, this is the path we were allotted in this life. Daily I am reminded by the absence of one child how blessed I am to have two others in my life to dote upon, to raise, to teach and to love. Mum to three, parent to two is a hard gig some days but we fight for our family, and we fight through the pain that sits under the surface of our laughter and tears. We can never recover from the loss of Ariana, but we move forward, we adjust and we make changes. None of us are now who we were back then in the wee hours of the new year of two thousand and ten. Rather, we are stronger, more compassionate, better loved, and loving. We were touched by an angel, and the life lessons we learnt from Ariana, and the grief that came from losing her will be reverberated through our family for generations to come. For her, we are truly grateful.

About the Author: Tam King is a 26 year old Mum to three, parent to two. She is a blogger, she works part time, studies part time, parents her two children full time and lives with the loss of her second child, her daughter Ariana at 4 days old all of the time. She uses blogging as an outlet and to keep her sanity and preserve her marriage. She writes about her life, her loss and her grief and the varying dimensions they take on at any given time. You can read more of Tam at her blog, Nearly… Not Quite or follow her on Facebook at Nearly… Not Quite

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