Six Years Is A Long Time by Dani

It has been six years since precious Jasper died.  In this blog, Dani shares with us her memories of what has occurred since Jasper died and her memories of the time surrounding his death.

Photo taken and copyrighted to Dani Hall

Every once in awhile, I remember how long it’s been. Days like today (18th November) – his 6^th birthday, particularly mark the passing of time. Time really passes. It is not something we imagine. But the passing of time is both objective time and subjective time. But there is also personal time, which is measured in your relationship to memory.

When I stop to think about it – really think – so much has happened since his passing. We lost our house, went through fertility clinics to try and discover my infertility problems, we had a rainbow, we raised money for a camera kit for Heartfelt, I’ve lost 3 nephews – one to SIDS and two to prematurity, I’ve been blessed with 4 nieces, helped my mother-in-law find happiness with another partner and watched her get married, gotten a job as a sleep scientist, graduated university with a Bachelor of Justice and currently enrolled to complete a Master of Social Work, volunteered online with SANDS, enrolled my rainbow in prep, took a family road trip, watched Gangad pass, had two sisters get married, my rainbow had surgery and broke his leg, watched many friends get married and have babies and I’ve gotten 3 tattoos. And that’s just what I can think of, off the top of my head.

But then there’s the other side of time. Where it seems like it hasn’t passed at all. Where I think about his birth – rushing for an emergency caesarean and his admittance to the NICU. The strong yearning to see my baby – to hear him cry. The fond memory that we thought he was a girl right up until the moment he was born. The name we had picked out for him – Taryn – until he was born and we had to think of his name on the spot. The sheer relief that flooded through me when he was born, knowing he would be taken care of. The feeling of my heart plummeting when they told me to make the choice to continue care or remove him from life support. The knowledge that I had seen him only a few hours earlier and he was alive – kicking, responding to my touch – and knowing I’d never see that again. And in there hazily, the memory of my dad holding his oldest grandson, saying goodbye, telling him how proud he was of him. Getting wheeled back to my room after kissing him goodbye, knowing I’d never see him again. The sheer pain in my heart – hurting to move – hurting to breathe. The guilt for removing support. Preparing a cremation and funeral. Something no parent should have to do.

The overwhelming support and the text from my dad I will never forget “Dani, you should be very proud for creating a life and trying to give him the best chance possible – not many people can do that”. The foggy memories of loved ones visiting – and trying – really trying to connect but not being able to. The loss of friends.

The memories are right there, as though it all happened yesterday, but it’s been 6 years. 6 years ago we still thought he was a girl. 6 years ago we knew our baby would be born early we just didn't know when. 6 years ago I was still in ignorant bliss that our baby would survive. Little did we know in 24 hours our baby boy (surprise not a girl) would be born at 25+6 weeks and another 10 hours after that we would have to take him off life support and watch him go to heaven in my arms.

Time has taken away a lot of my innocence, given me a lot of grief, taken my son further and further away from me. But it has also given me many happy moments, blessed me with another son, made me who I am today.

“No matter how much time passes, no matter what takes place in the interim, there are some things we can never assign to oblivion, memories we can never rub away.” 

– Hakuri Murakami

Dani

If you require support after reading this blog please contact

Sands on 13 000 72637

Danielle Hall

Wife to Corey and Mumma to two boys: Jasper Rhys in heaven and Harrison Phillip Robert in her arms. Jasper passed away after PPROM at 23 weeks and birth at 26 weeks, surviving for 10 hours in the NICU unit. Currently completing a Master of Social Work with the goal to aid in the safety and protection of all children, because all children deserve to feel safe and loved.

The NICU

Dani shares with us the time Jasper spent in the NICU and having to make the hard decision to turn off life support.

     "I could have stayed in that NICU unit for hours just touching his delicate hands 

      and stroking his arms and head, but we weren’t allowed. Many of the babies

       in the NICU are very sick and I know they try and limit contact until babies 

      can be removed from their special chambers. Regretfully I agreed to go back 

      to my room."

November 18, 2011, at 9.31am my sweet baby boy Jasper was born at 9.31am by emergency classical cesarean at 26 weeks. When he was born I didn’t get the opportunity to say hello, or to see him, he was in respiratory distress. The nurses showed us some photos before he was whisked away to the NICU unit.

It would be almost 4 hours before I got to see him for the first time. He was intubated and was on a positive airway pressure machine to help him breathe. He was so small at 785 grams but he was fighting. In his small humidification chamber I could see his tiny legs kicking and I could see him trying to cry – he couldn’t make a sound because of the breathing tube. I was told I could put my hand in and touch him as long as I sterilized my hands first. That first touch – his skin so soft, but so bruised and red from the trauma of his birth. But I didn’t even notice the colour of his skin – all I could think was that I had birthed a perfect baby boy – a fighter. He was naked, save for a tiny nappy that could have fit on my fingers, and a teenie tiny leg band that won’t even fit over my finger. The doctors told us he was doing very well and that they were able to reduce the pressure of his machine and that he was starting to breathe on his own.

I could have stayed in that NICU unit for hours just touching his delicate hands and stroking his arms and head, but we weren’t allowed. Many of the babies in the NICU are very sick and I know they try and limit contact until babies can be removed from their special chambers. Regretfully I agreed to go back to my room.

It took so much begging to the nurses before the consented us to go back down and see him. They finally allowed us at 7pm, but when we got there, it was not cheerful anymore. The doctor was about to call us. Jasper had stopped taking oxygen and was suffering pulmonary hyperplasia, meaning his lungs weren’t developed. The doctor gently explained that with the amount of time he had been without sufficient oxygen, the chance that he would get through this was remote – and the chance that he would ever be able to see, talk, walk or be without oxygen for the rest of his life was nil. They told us they believed that his death was inevitable and that we had a choice. To remove his life support and let him fly to God peacefully, or keep him on his oxygen and to see if he improved.

How does a parent make this choice? My mind was numb. Could I possibly live the rest of my life knowing that I agreed to remove care? The doctors said his death is inevitable but what if they’re wrong? Can I live with that? My mind was numb. I looked at my husband. Silent tears streaming down his cheek – still in his work clothes from when he bought me in that morning. My only thought was that I didn't want to be alone. ‘Can I please get my parents here’ I remember asking. The doctors agreed and our parents were called.

Somehow I fought through the fog and mind numbing pain to ask for Jasper to be baptized. I don’t know if there is a life after this, but I wanted to make sure my baby got every chance at heaven and God. Our parents came and finally, Corey and I knew it was time. Time to make sure our baby suffered no more. We knew. He wasn't fighting anymore, he was still. He was exhausted. They placed him in my arms and slowly removed his tubes. I held him tight and all of his grandparents came and told him how much they loved him, touching his hair. In the final moments of life, all he knew was love and comfort. In his mummy’s arms and hearing the voices of people who loved him.

He passed away in my arms at 7.31pm. Finally I was able to give him to his grandparents for a cuddle. They said their goodbyes and I sat there thinking – I had to switch off life support on my son. My first born. I did that. Nothing will ever change what I did. I hope he knew I loved him. I didn't want him to suffer anymore. If nothing else in his short time on Earth I wanted him safe and loved. And I hope he felt that.

The absolute soul crushing, heart wrenching physical pain that comes with losing a child, and the guilt I felt for ending his care – words can never make someone who hasn't lost a baby understand. The pain – it’s physical and it tears apart your heart. You literally feel like your heart has shattered and you are surprised it still beats. Each beat is physical pain. My baby was gone. I helped that along. And 2 days later I walked out of the hospital without my baby, slowly, bruised, and with a broken spirit.

Dani    

If you require support after reading this blog please contact 
Sands on 13 000 72637 

Danielle Hall

Wife to Corey and Mumma to two boys: Jasper Rhys in heaven and Harrison Phillip Robert in her arms. Jasper passed away after PPROM at 23 weeks and birth at 26 weeks, surviving for 10 hours in the NICU unit. Currently completing a Master of Social Work with the goal to aid in the safety and protection of all children, because all children deserve to feel safe and loved.

Farewell to precious Manaia.

Fiona is a new comer to the Sands blog. She shares with us her precious Manaia on the day he died.

It was the 5th of November and as the clock ticked closer to 5.30pm I knew it was nearing the time to say goodbye to Manaia. 

We had just finished weighing and measuring him, trying not to notice his purple arms and legs as he lay there silently on the scales. His face was unscathed, perfect and flawless, we kept telling ourselves 'he just looks like he's sleeping, he'll wake up'. 

His final measurements were 3295 grams and 50 centimetres long at the age of 128 days old. 

We quickly redressed him in his clothes and I put on his final name tags, the tags I never ever wanted to put on our son. 

Baby of Fiona, ID number: 7784039. 

He looked perfect, the most beautiful I had ever seen him. I had never noticed how gorgeous he was until it was too late. 

But then again I was never able to see his face free of all the tubes, cords and wires. In all of his 128 days on earth I had only ever seen his face this clear on one other occasion and that was the day he was born.  It was only fitting that the second occasion would be when he had passed away. 

Not a breath he would take nor a sound he'd make again, this was well and truly it. Manaia did graduate from NICU but instead of going home like most of the other bubs in NICU he graduated straight to heaven. 

I asked the nurse if I was able to carry him down stairs and so I did. 

Walking out of our private room and into a corridor, everyone must've known by the look on our faces, my red swollen eyes and our body language that this was the end of the road for us. 

We left the unit with Manaia in my arms and out into the open corridors we went, walking past a window with the sun shining oh so brightly, it was at that moment that I realised Manaia had never seen the sun because his bed was on the opposite side of the windows. He would never ever see how big, bright and beautiful it could be, nor would he ever feel the warmth of it. 

We got into an elevator with Charlie (my partner), Jan (the counsellor) and the sweetest nurse Amy and down into unfamiliar territory of level 1 we went. 

I remember feeling the weight of Manaia, he felt so much heavier than he was yet in reality he was far from it, he was tiny even for a preemie. This was the hardest walk I would ever have to take in my life and at the same time it was one I didn't want to end. We got off the elevator and walked around a corner and there it was, the morgue. I saw the entrance and realised I'd have to let Manaia go, I had no other choice. 

In less than 24 hours from finding out Manaia was sick, he was gone. And as quickly as Manaias life had ended a new, much more scarier life had begun, life as a bereaved mother.                                                                Fiona

If you require support after reading this blog please contact 

Sands on 13 000 72637

Fiona Mataafa

My name is Fiona and I am a 23 year old first time mother who lost my only child, my 4 month old son Manaia, after 128 days in NICU. I reside in Victoria with my partner Charlie. I hope by sharing my experiences as a bereaved parent that I'm able to, in some way, bring peace and comfort to others going through the heartbreak of child loss.