It’s taken nearly a year to put together my thoughts, feelings and words to share with you.
Never for one second did I think that I would learn so much about prematurity and the journey that goes along with it, much of which you learn as you go.
If your baby or a baby you know is currently in hospital, having been born early or you have experienced a traumatic loss; I hope that you can take some comfort in knowing that you are not alone.
The Neonatal Unit is a different world entirely from what we are used to. One filled with fear, sadness, anger, frustration, loneliness, hope, joy and so many more emotions in between.
Maybe the toughest journey you will ever endure.
Our journey began in March 2019.
At 28 weeks pregnant, at a private 3D scan, we were asked if we wanted our daughters measurements taken, just a routine check. Little did we know that our daughter was, in fact, 3 weeks behind on her growth. We didn’t think much of it at the time, as we’d been told at 20 weeks that it was likely our baby would be quite petite due to my small frame.
We were unware that this would turn out to be the start of our prem journey.
One emergency hospital scan later, our daughters growth was confirmed as significantly behind her gestation.
All the terminology that went with it at the time, too much to digest, to understand.
Growth Restriction
Poor Blood Flow
Weekly Growth Scans
Within days, we were being scanned twice a week, checking blood flow in the cord.
We saw our daughter grow slightly with each scan and clung to hope that all would return to ‘normal’ and we would continue our pregnancy to 40 weeks as anticipated.
At our next scan, the consultant told us:
“We are going to try and get you to 32 weeks before your daughter is born… but let’s try to get to 30 weeks first”
That was the first time we really realised how serious the situation was. That’s when the worry really set in.
“It’s nothing you’ve done that has caused this, it sometimes just happens”
We heard the consultants say this many times, but its hard to believe it when your world has just been turned upside down at what was meant to be an exciting 3D scan.
We were given steroid injections to prepare our daughters lungs for early delivery. C-Section was mentioned.
We got to 30 weeks and at the next scan, our consultant was beaming, congratulating us on making it that far. It felt really strange. But it also gave us a glimmer of hope.
Blood flow looked great in the scan, our daughter was growing, she was healthy.
We could almost breathe.
Two days later, at our next scan, we sat silently looking at the screen. We knew what to look for at this point, after multiple scans.
Something didn’t look quite right.
“When are you 31 weeks?”
I looked nervously at my husband. 31 weeks would be next week.
“The blood flow is very poor today. We need to admit you for monitoring”
Sheer panic set in. Surely we were going to make it to 32 weeks, no?
Doppler checks, heart rate monitoring, consultant meetings.
“You will be having your baby in the next few days”
None of this sunk in. Not one word.
A nurse doing our monitoring then said”
‘”Aw today will be your babies date of birth!”
Today? Wait, what? Today? No. Surely not.
We were hooked up to magensium sulphate to protect our daughters brain in delivery, to minimise a bleed on the brain. Words cannot describe how painful that was. They almost stopped it, but we knew how important it was so I endured the excruciating pain, feeling as if my veins were about to explode.
My husband nipped out for something to eat, while I continued to be monitored. A doctor came to see me, discussing the anaesthetic, a spinal injection. I was asked to sign a form to consent and get ready for theatre.
I was so confused, I thought we had a few hours yet to let the magnesium sulphate work its way into my system.
The blood flow was now so bad, we were being taken to theatre immediately for an emergency c-section. I phoned my husband to come back, and off we went.
As much as I can describe here, I don’t think anything will ever come close to describing the overwhelming sense of fear.
Fear of losing our daughter
Fear of paralysis
Fear of pain
Words fail me here. By far, the most traumatic experience of our lives.
Our daughter, born at 30 weeks, and weighing less than 1kg, came out crying and breathing on her own. Both of which we were told not to expect.
And so our journey really began…
55 days in the Neonatal Unit. Nearly 8 weeks.
Intensive Care
High Dependency
Special Care
Incubators
Oxygen tubes
Needles
Cannulas
Heart Rate Monitors
Tube feeding
Examinations
Blood tests
Daily consultant meetings
De-saturations
Adjusting oxygen levels
Hot cots
Eye examinations
Hearing checks
Oh and the constant beeping
Beeping for temperature.
Beeping for oxygen levels.
Beeping for heart rate monitoring.
We saw it all.
In the early days, you’re on cloud 9. Your baby is alive, safe for now. You are ignoring the trauma of what you have just been through and focusing 100% of your attention on your little miracle in a tiny incubator, hardly visible from the endless tubes, needles and monitoring. Not forgetting the blue light for jaundice.
You can’t dress your baby. You feel like you need to ask permission to hold your baby. Nappy changes are a bloody nightmare, trying to work around an incubator, never mind all the tubes. You feel like your every move is being watched.
I hated it. I hated feeling watched, like I didn’t know what I was doing. I felt angry at every single person. I felt out of control. I felt tired. I felt… helpless.
We got excited with every tiny development, from a reduction in oyxgen support, to a temperature change in the incubator.
You don’t realise at the time that there is this “honeymoon period” where babies tend to make big improvements in the first few days.
Nothing prepares you for the backward steps though. Looking back, they wern’t backward steps, only part of our journey. But at the time, it is almost impossible to see that. And that’s ok to feel like that. It’s tough. Remember that.
The small changes lead to big changes.
From weeks in intensive care, to high dependency.
From incubator to hot cot.
The first outfits.
And then the moment you to go special care, after all those days, weeks, months of waiting. Waiting, when you felt like you had absolutely zero patience left, totally unaware that you have actually become the most patient person in the planet.
Special care, the last room before you go home. The room closest to the door. The room where you wish time would just hurry up. The room that appears to take the longest. The room where babies need to demonstrate that they can feed on their own, breathe on their own and maintain their temperature on their own and you get frustrated when these things don’t all click.
The magical words:
“You can go home now…are you ready?”
When even though you thought you were ready 55 days ago, you really aren’t at all.
We are so very aware that our precious daughter is one of the lucky ones. One of the babies who made it home with her family. Made it home with no complications. A healthy, happy baby. A baby who will be 1 next month!
We are so very aware that there are many families out there who don’t get that opportunity. So many families who, depsite putting up a courageous fight, do not get that magical moment where they can take their baby home.
Looking back, the way I isolated myself in the neonatal unit, the anger I built up, and the fear I carried with me, didn’t allow me to really process what we went through as a family. But don’t worry, it is totally normal to feel like that.
The NHS are wonderful. They really are. The consultants, doctors, nurses, specialists, they all have so much patience, so much determination and you see raw emotion on their faces at many times in the neonatal unit. They are human after all and they understand what we’re going through. Talk to them, allow them to help you. Build trust in them if you can. They want to help, even though at times it seems like they don’t listen. They are doing what they can to help your baby.
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The Prem Diaries have been created as a space for families and friends of families like ours, who are currently going through a prem journey or have been at some point in their lives. Something to offer comfort in those hours of darkness, to offer hope, no matter what path the journey takes.
Let’s create a community to support each other, to lean on, to relate to, to cry with.
If I could tell myself a year ago, that I wasn’t alone in this then I would.
I invite you to share your own journey. Keep it anonymous if you like. Let’s share our experiences to provide that space for people to escape from their own minds for a little while. Mums, dads, family members, friends. All of your stories are important. They matter.
If you’d like to contribute, please email your story to: thepremdiaries@gmail.com
Love,
The Prem Diaries
P.S. Here’s our cheeky little girl now. Alice, age 10 and 1/2 months
The Prem Diaries 