Our daughter at 5 weeks old, who never left the hospital, contracted sepsis. A sepsis (which we were told is similar to Meningitis) swamped her tiny premature body.
Rewind 5 weeks.
Due to contracting HELLP syndrome in pregnancy, I was minutes from seizing so the the decision was made to have an emergency c-section at 26+6 weeks.
We had been told she had great odds of survival, 80% actually; even more so because she was a girl.
She was expected to be on a ventilator for at least 10 days.
Less than 24 hours later she no longer needed the ventilator, she switched to the Cpap machine. This, we were told she’d be on for a few weeks too. The next day she came off that too, switched to a Vaportherm machine, which gently gives oxygen, to ensure her lungs wouldn’t stick together.
She surprised everyone.
A Little Diva
She sailed through everything she was meant to.
Feisty little diva – knew exactly what she wanted; including pulling up to 8 feeding tubes out a day.
We even had a discharge date, a date to make plans as a family if five.
Five days before she died, she was out for a cuddle, we loved our cuddles, all her requirements would settle her, she’d be so relaxed. This particular day she had an apnoea whilst on me. She was whisked back into her incubator, feet were rubbed she came around.
We were told that babies often forget to breathe, and she was at that point due for another transfusion.
It was scary.
We visited again I mentioned she had slight odema in her arms, we were told this was normal, not to worry.
I was able to have a cuddle, only this time I was terrified of hurting her.
She was in need of some relaxation, time to recover from her transfusion. Premature babies need lots of rest, even after nappy changes and feeds.
3 days before she died we visited with a milk run, where we discovered she’d had a test – an eye test, we’d only heard about it through other parents on the ward, we didn’t know she’d be having one too.
They don’t like parents being present due to how invasive and distressing it is for the babies (although in hindsight, maybe a cuddle would help the distress), can often make babies unwell.
I only saw her in the incubator on that visit, she had really found it distressing she really needed rest. Her oxygen requirements were raised.
The following day she was still recovering, but she was able to have a feed. We were hoping for a better day. Her final full day, we visited, her O2 was still raised but she seemed to have perked right up. I was allowed a cuddle her brother saw her out of the incubator for the first time.
We left the hospital that day on a high, with plans for the next day for have a girlie day. My eldest daughter was going to get her first cuddle.
Less than 24 hours later Melody was gone.
No girlie day, no warm cuddles.
Over night, the night in which we’d had a wonderful day with her, she was changing.
The O2 requirements increased, in turn she needed a ventilator to breathe for her.
Her heart was restarted 5 times.
Antibiotics sooner could have changed our outcome, something none of us will ever know.
With her CRP level at 110. The sepsis taking hold of her, there was nothing more that the doctors could do.
When we walked into the unit, with only a hint of what was to come (we thought she’d had either another apnoea or was going to be transferred), only to be told our five week old miniature Princess wasn’t going to survive.
We had to say goodbye.
It wasn’t something we were greatly aware of; that Sepsis and Meningitis could happen in a place where your child has never left.
We were surprised when we were told this. We knew that there was another baby poorly with suspected Meningitis on the ward, but we never knew just how common it is in the NICU.
Of course knowledge probably wouldn’t have helped her; we’re not doctors. But awareness that it can happen.
However you never get over the shock of having your seemingly healthy baby die.
Never be afraid to mention changes. Although the nurses see them every day, as parents we’re the ones who learn every single inch of our babies, their bodies.
Ask questions. If you don’t understand then ask again, explain that you didn’t quite understand.
That baby is YOURS.
That part is hard, I found sometimes it felt like she wasn’t ours at times.
Make yourself aware. I never knew milk banks existed, or that I could get breast milk from other sources. I didn’t want her to have formula, it seemed harsh for her tiny tummy, but I couldn’t pump enough, quickly.
Learn about the procedures and tests, again ask. If you’re not happy get a second opinion. There are things we would have wanted and declined had we asked more.
I often wonder whether I did enough. Asked enough, spoke up for her.
Sepsis can happen in the hospital, in the NICU and can kill. It can destroy everything.
It stole our baby.