Read Olivia’s personal story for NICU Awareness Month

Published on September 27, 2021 by TFP Team Category: From our team
baby in neonatal intensive care unit

As September is NICU Awareness Month, our technical manager, Olivia, wanted to share her experience to help bring understanding, appreciation, and maybe even some comfort to those who need it. Here’s her story.

Going through a relatively eventful pregnancy during a pandemic for a first-time parent was interesting enough. Throw in becoming a “premmie” parent, and you’re at a whole new level of adaptability, pain, happiness, joy, guilt, stress, strength, resilience and, well, every emotion in-between. The list is too long to write.

At 30 weeks pregnant, I was rushed to hospital to give birth to my baby girl, Grace. She was born 10 weeks early at 1.145kg (2.52lbs).

If that wasn’t hard enough, due to the circumstances in the hours before her birth, she was really struggling in such an unfriendly environment. So, when she was born, the first Apgar score she received was a 1 out of 10. Basically, she had a pulse, and not a strong one. She wasn’t moving or breathing, but the neonatal team fought for her, and she fought right along with them.

When she was born, I didn’t get to see her or hold here as she was taken to be intubated and then straight to the NICU.

I still remember the alarms going off and the neonatal team in the theatre calling out for help because they couldn’t get her to breathe or intubate her. This lasted for six minutes.

That feeling of terror instantly vanished and made way for numbness when they called my husband over to cut the cord of our baby. So, eight hours later, I was finally wheeled round to the unit to meet my little girl. She was tiny, and covered in wires and tubes, but alive and that was the most beautiful sight I have ever witnessed. It was all thanks to the amazing team who worked with us.

After a couple of days, she was no longer on the ventilator and only needed continuous positive airway pressure (CPAP) and then bilevel positive airway pressure (BiPAP). Finally, after a little over a week she no longer needed oxygen.

Then, when she was three days old, I was allowed to hold her – although we weren’t allowed to do “skin to skin”. She had to be bundled in a blanket due to her inability to control her body temperature while she was outside of the incubator, and because of the number of wires and tubes going into her. We needed to avoid getting these caught if they were exposed outside of a blanket.

At least it was progress!

The ups and downs of the NICU

NICU is known for being a roller coaster full of ups and downs. We were lucky that her progress was, for the most part, on a positive trend.

We had one day, which we refer to as her “blip”. I came into the unit, walked straight to her room (room 8). As I approached, I saw the curtain pulled around her incubator with several doctors and nurses gathered around but, before I could get any closer, I was blocked by a nurse asking if I was Grace’s mum.

Unfortunately, Grace (the “good girl” on the ward) had started screaming an hour before. She barely moved usually, let along made a sound. Over that hour, her breathing became an issue, she started to turn grey and lose colour. She also became cold and her tummy became distended.

I was not allowed to see her. If you’re a parent, I don’t even want you to try to imagine that because it was horrific. I sat in the waiting room for an hour waiting for my husband to get there, knowing that she was suffering, and I wasn’t allowed there to be with her.

During this time, I had a number of visits from the doctors and nurses working on her to keep me updated and calm (well, as calm as can be expected). Finally, we were allowed in. We were then told that she was immediately put on two spectrum antibiotics, taken off of all food, and given oxygen again. The temperature in her incubator was also increased. By that night, she was moved into the high-dependency suite we had just come out of.

After a couple of days, she was back on track and moved out to room 8 once again.

After five weeks, she was taken off full heart rate monitoring, SATs and temperature and given an apnea monitor. This only alarmed if she didn’t breathe for 20 seconds, and it only went off once (any NICU parents will know the frequent panics caused by a slipped wire!).

It was also around about this time that we were told her PDA (patent ductus arteriosus or hole in the heart) had sorted itself out and did not require any additional medical intervention, and her brain bleed was cleared up.

Up to six weeks she had to have caffeine everyday (to be fair, I totally get the notion of needing a little caffeine to start the day, especially after a year of sleepless nights!). This was to trigger that part of the brain to tell her to use her lungs to breathe because, at this point, she still wasn’t supposed to be out in the open doing that, so they need a little help remembering. After six weeks, she was allowed to try feeding from a bottle rather than the tube.

After six weeks and four days, her feeding tube was removed. We then were allowed to room in the hospital for two days, and provided her weight reached 4lbs, we were finally allowed to take her home (she reached so close to 4lbs that they allowed us to take our tiny warrior home).

“Though she be but little, she is fierce” – Shakespeare’s A Midsummer Night’s Dream.

Learning from the experiences

I feel like I learned so much from these experiences:

  • I learned how to check the acidity of the contents of Grace’s stomach before her next feed
  • I learned how to feed her through a tube
  • I leaned about all of the amazing things a mother’s body can do through the process of “kangaroo care” (skin to skin)
  • I learned so much medical jargon, I feel like I could bore you all day long
  • I learned about the community of parents with similar yet completely different experiences
  • I learned about the different types of babies to end up on this ward
  • I learned about the brilliance of the charities who work tirelessly to support people like us and our baby, including Bliss
  • I also am so proud to have witnessed the amazing heroes in our NHS first-hand (in the labour ward, delivery room/theatre and the neonatal unit).

Over those 47 days, we had her first Christmas and New Year. The wonderful nurses, doctors, consultants and premmie/NICU charities made this the best, considering she was spending it in a small plastic box.

Our time in neonatal with Grace has changed me for the better. I am so much more aware of the fragility of life, but in the sense that I appreciate every single second far more then I feel I would have before.

My patience has reached saintly levels (at least some of the time), and I am now so conscious of the power of kindness on someone else’s life. I hope more, trust willingly, love fiercely, and feel stronger for having experienced NICU.

There is a community and so much support for you. You have a fighter; they are stronger than they look. It’s an emotionally confusing time. You’re so happy and joyful as you have a newborn, but equally terrified and sad and guilty over what has happened.

It’s one of those places where the walls have heard more prayers than churches.

Where you can talk about stomach fluid being a certain level of green and be happy about it.

Where you witness everyday heroes care for your baby when you aren’t able to.

Where you can sit and celebrate Christmas Day with people who are with your family instead of their own. Where you can bring in the New Year with those same people, who have given up their time to scrub in and care for your children.

NICU is where you celebrate a weight gain in mere grams.

Where your baby can join you for your morning coffee because it’s exactly what the doctor ordered.

Somewhere you bare your soul without a second thought.

For the unfortunate few that need to go through NICU, it is tough. But in the words of Dumbledore: “Happiness can be found even in the darkest of times”.

Thank you for taking the time to read this and allowing me to help raise some awareness of the NICU experience in this country. And, of course, thank you to the NHS for saving our babies.

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