I remember the first couple of weeks and months after saying goodbye to my precious Jonah at 30 weeks gestation due to a heart condition as extremely difficult and filled with so many ups and downs, I felt like a marionette doll living someone else’s life, because there’s no way that much sadness could be…
You never really take on board, that everything can change in an instant. As little as 24 hours your whole life can change. We assumed once she was on the journey home, neonatal death was out of the question.
One day we woke up excited to be seeing our daughter in NICU, she had been born at just 26+6 weeks due to HELLP syndrome, even as little as 670g she sailed through the expectations the medics had for her.
Out of everything, the 24 hours are hours I won’t forget, so few yet so significant, I hold tight to this day.
We traveled to see her as we did every day, she had moved closer to the door; closer to the low dependency unit. We were counting down the days for her to come home, we had plans, we were told to make plans for her home coming.
Nothing goes to plan.
As we entered the unit, full of smiles, in a bubble of happy. We only had my son with us as her older sister had gone to a party. We had been told she was behaving and doing as she should have been. Her O2 level was still a little higher from a procedure she’d had a couple of days before. But she was doing okay.
She were able to leave her incubator to have a cuddle, to meet her big brother properly, he had only ever seen her in the incubator, stroked her hand and face through a circular window, their relationship was always through plastic and some wires. It was the most amazing moment, he was so thrilled, and so excited about finally seeing his sister properly.
My son kissed her head, stroked her face, let her grip his finger. He told her all about his train collection, which train she could play with first; her little face turned to his, she knew his voice, she knew this little person was hers. He was so looking forward to taking her home to play with him. He had not long turned 4.
Everyone was so excited for this little baby to be come home in a matter of weeks.
We had a family photo minus my eldest daughter (guilt of course I now live with – always).
I held her, took in her warmth and her smell as I did every time I was allowed a cuddle. Stroked her face, although I can never remember kissing her forehead, something I do religiously with my children, but I can’t remember (why can’t I remember?) The fine coating of hair on her head.
We soon had to leave, I had promised my daughter we would have a girlie day the following day, we had planned to take a picnic, spend the day together. The nurses had said she could have helped with a nappy change, and assist with feeding, she was even being offered to have her first cuddle.
Leaving the hospital at about 2.30pm, our plans for the next day were in place, we were excited counting the hours until our first of many girly days.
I never said goodbye. I was always too scared
to say it. Too scared it would be the last time she’d hear it.
The next day came, instead of our girly day…less than 24 hours from when our plans were made…She died.
We had to hear the words “I’m afraid she won’t survive”.
Rewind to overnight, we learnt that she began to feel poorly at about 11pm, she’d had fainting spells before, but always came round. (If she pulled out a feeding tube, she’d make herself gag, then pass out). There was a long wait for her to be seen, a long time for her to receive antibiotics. She grew tired, and needed a rest, and was placed on a ventilator. Neonatal Sepsis began to overwhelm her.
Early hours of the morning, the medications were given, but was sadly too late, her heart was restarted five times, in order for us to say goodbye.
We arrived at 9.15am expecting to be told she was either having a ‘blip’ or she was going to be transferred.
But she died. Fifteen minutes later she was gone. She was only five weeks old.
Just 24 hours before, we had been excited, we were getting ready to spend the afternoon with her, we had cuddles.
24 hours it took for us to feel her life leave us.
24 hours was all it took to change everything.
It wasn’t in the plan, it wasn’t meant to happen to us. Her dying wasn’t part of the plan.
We didn’t realise we could stay with her for long; we didn’t know we could have had the extra time with her.
Approximately 2.30pm we left the hospital. No hopes, No plans. Broken.
Her brother and sister never got to give her a cuddle. She never got to fall asleep on their chests.
Neonatal Death, changed everything.
It only takes a day. 1440 minutes.