The experience of having a baby in a neonatal unit is often described as a ‘rollercoaster’. I understand why: ‘rollercoaster’ outlines the ups and downs, the twists and turns, the fear and exhilaration of a baby’s and their parents’ journey. A pretty succinct description.
While it is an apt description, I have never liked the ‘rollercoaster’ term. To me, it implies something fun. Something undertaken voluntarily. An activity that creates adrenaline, the fear is forgotten. Once the rollercoaster has finished, you might be so exhilarated you exclaim ‘again, again!’.
The neonatal experience is not fun, nor was it undertaken voluntarily, and I am in no hurry to repeat it.
I am reflecting on rollercoasters today because it is the first anniversary of the day we were told that Hugo was unlikely to survive. Every day since Hugo had been born four weeks earlier was full of joy, happiness, worry and anxiety – but we were not at all prepared for that news, or the subsequent days (I don’t think it is possible to be prepared).
A year ago today, Hugo’s nurse told us the consultant wanted to see us at a certain time. That time was around the same point I would be expressing my breast milk, so I shifted my timings and hurried back to the nursery. He and Martin were sat next to Hugo’s incubator. I walked in with a smile, which quickly vanished when I saw the look on Martin’s face.
Martin had already been told the consultant’s news: that morning, while we had popped out for a break Hugo had started to regularly desaturate, and to a worryingly low level. While he had subsequently recovered, the consultant explained that one day Hugo might one day desaturate and not come back. No one could say when that could happen.
Ultimately, he explained, babies with similar issues do not survive. This explanation was given softly, kindly, compassionately. He repeatedly said how sorry he was.
He advised that steroids could be tried to help Hugo’s lungs develop, but they don’t work on all babies. The steroids had potential side-effects that could make other functions worse.
I remember sitting in shock. Yes, we knew that Hugo was very ill, and with an uncertain outcome. But I didn’t want to admit that to myself, and Hugo Boss was so very strong and feisty I thought (hoped) he just needed time to grow bigger and stronger.
I was terrified that Hugo might have a final desaturation when I was not there, that I would not be with him to comfort him.
The consultant left, and I sobbed over Hugo’s incubator. The nurse hugged me and told me how sorry she was, too.
Hugo hated being handled, meaning we had not yet had a cuddle. In the aftermath of that news, we were told we could have a skin-to-skin cuddle that afternoon. It might be our first and only chance.
I went to the toilet to get myself ready (I needed to whip off my bra etc). I was still so shaken by the news and wracked by sobs, but wanted to make the most of my cuddle with Hugo and try not to cry. Furious, I got my anguish out the quick way, by kicking the toilet wall several times. Fortunately, I was wearing boots, otherwise I would have had broken toes to add to my list of woes.
The video footage we shot on our mobile phones clearly shows our raw emotions. Getting Hugo (a baby who weighed no more than a tin of baked beans) out of his incubator was quite a process, involving three nurses because of all the wires. When he is lifted out you can see exactly how tiny he was, in perspective to the adults around him.
Hugo settled quickly on the skin between my boobs. It was absolutely incredible. Exhilarating, wonderful, amazing and all other similar words you can think of. For four weeks I had made do with comfort holds, and with Hugo gripping my finger.
Now, I could feel his soft, warm skin against mine. I could smell him. I could feel his little hands tracing my skin, and feel his feet kicking me. I could feel him boogy as I sang to him. I could hear the little sucking noises he made.
I sang to him, told him how much I loved him, and told him all sorts of other things too.
Despite the devastating news I had heard just an hour or so earlier, I felt on top of the world. In fact, the rest of the world ceased to exist. It was me and my baby (and Daddy, too).
Knowing it was possibly the first and last cuddle, I wanted to drink up every single moment. I didn’t want to let Hugo go, but Daddy needed a turn too. Watching Hugo snuggle into Martin’s chest, and the look on Martin’s face was equally wonderful.
Leaving the unit later, I felt like I had won the lottery. The flood of hormones and emotions relating to the precious mummy and baby moment overrode my sense of sorrow.
For a while.
Once those hormones had worn off, the reality hit. I sobbed and screamed in despair, sorrow, fear and frustration.
Both Martin and I spent a lot of time with Hugo that evening, so scared of losing him.
Hugo held on, and the next morning it was agreed to start the course of steroids.
The previous day had been a rollercoaster of emotions. As the week progressed, it turned out that rollercoaster was one from a small funfair. The biggest rollercoaster, like all the scary ones from Alton Towers put into one, was to come.
At first, the steroids seemed to be working brilliantly. We hoped they were working. We might take our boy home! The scary rollercoaster journey was all worth it.
Then they stopped working.
Out of the five weeks Hugo lived, the last was by far the most wonderful because of all the cuddles we enjoyed. It was also the worst because of hopes raised, hopes dashed, awful decisions made.
Like the rollercoaster at Alton Towers that disappears vertically into the abyss. But doesn’t raise you up again.
It sometimes felt like a pretty effective form of torture.
What I try to remember from that week is those amazing cuddles. Watching Hugo’s face in a mirror, him opening his eyes. Such simple pleasures.
Memories no one can take away from me.
I love you, Hugo, and miss you so much.