Amelie’s Story

Hi everyone, I'm Amber, I’m 26 and a first-time mummy to my little miracle, Amelie Althea.

Amelie is nearing 6 months old, and I am currently still on maternity leave from my job as a Paediatric Haematology/Oncology Nurse.

Going in to have my baby, the last thing I expected was for her to end up in NICU.

A bit of background

I’d had a pretty rough ride through pregnancy, terrible morning sickness and heartburn, and having open abdominal surgery at 16 weeks pregnant. This was to remove a large cyst on my right ovary which was found to be a stage 1a ovarian cancer. But despite all of that I never expected a NICU stay. We had regular growth scans and monitoring after the surgery and our baby girl was growing well so we thought the hardest part was behind us.

I was advised I needed a full body MRI following the surgery to check there was nothing else sinister going on. The doctors said that although they do perform MRIs during pregnancy, they could not 100% guarantee it was safe for the baby and so I opted to wait until after the birth, but requested it be done as soon as possible afterwards for my own piece of mind. With this in mind, I was booked in to be induced on my due date, 7th March 2020.

I went in and was advised that I would have a balloon induction, however as they were in the process of inflating this, my waters broke. I naively thought this would mean we would meet our baby girl by the end of the day, but in fact she did not make her appearance until some 31 hours later.

As a result, I was classed as a PROM (premature rupture of membranes) which resulted in both Amelie and I showing signs of potential infection. Her heart rate was nearing 200 before she was born and I had a temperature and was needing lots of fluids pumped into me.

Our NICU journey:

After what felt like a lifetime, our beautiful baby girl made her appearance into the world at 00.12 on 9th March. I thought that was the end of it, we would be in hospital for a day maybe but then go home and start our life as a family.

Amelie was put straight on my chest when she was born, but quite quickly we could tell that something wasn’t right. She was struggling to cry and making a grunting noise like she was really struggling with her breathing.

The midwife was starting to stitch my episiotomy and I remember her telling me to rub and put her back a bit to get her to clear her airways... I wasn’t on this planet... I was an exhausted, hormonal mess and this brand-new baby had just been put on my chest. I might be a nurse but let me tell you, when it’s your own baby, it feels like everything you know goes out the window.

Thankfully the ANNP (Advanced Neonatal Nurse Practitioner) arrived as they had been on standby for Amelie’s arrival due to being PROM and potential of a ventouse delivery. As soon as she came in, she asked if she could take Amelie from me to try and clear her airways a bit and help her with her breathing. Before we knew it there were lots of people in the room, Amelie had oxygen on and they were talking about sepsis and blood gases, it was terrifying.

I just remember in that instance the fear that I was going to lose her. We’d got this far, through the surgery and birth, I couldn’t lose her now.

The ANNP was amazing, she came over and explained what was going on and the fact that they would need to take her round to the NICU. My husband, Arron, was able to go round with them when they took Amelie, as I couldn’t bear the thought of her being alone. I was still led with my legs in stirrups, semi numb from the epidural and having my episiotomy stitched so I wasn’t able to go with her. Thankfully I did have my mum with me as a second birth partner so she stayed with me so I wasn’t alone.

After what felt like a lifetime, the midwife said she was done stitching me, and helped me get up and dressed so she could wheel me round to NICU to see Amelie.

I was exhausted, terrified and overwhelmed. I’d envisioned this little newborn bubble, skin to skin in a dimly lit room and the first breastfeed. Not this. I never imagined this.

In the NICU:

When we arrived in the NICU there were Doctors and Nurses surrounding Amelie, she was now in an incubator, she had little wires poking in her head to monitor her brain, the ANNP was desperately trying to get a cannula in to her tiny veins to start the antibiotics, another nurse setting up the CPAP (continuous positive airway pressure) machine, tubes and wires everywhere! I’ve seen these so many times at work, but nothing can prepare you for being there yourself.

By the time they’d got Amelie stable, it was around 2.15am. They wheeled me in next to her incubator so I could hold her little hand. We then decided that the best thing for us all, was for us to try and get some sleep even though this meant being separated from our baby girl. I couldn’t bear the thought of being in the bay on the ward with other mums and their perfectly healthy babies next to them, so my mum very kindly offered to pay for a private room so that Arron and I could both get a bit of sleep.

One of the doctors came to update us shortly after we got to the ward, and advised that things were looking as good as they could be given the circumstances. She also said that so far, all of the brain monitoring was looking normal which was a great relief.

After a few hours of sleep, we got up and showered and I pressed the call bell for the midwife and asked if I could have my observations done and have my antibiotics/pain relief ASAP so I could get down to see my baby girl. The midwives on the whole were great and really accommodating, understanding that I was desperate to get down to see Amelie as soon as I could. Being separated from your baby is just not natural.

We got down to NICU in time for the ward round, they said that the 6 hours of brain monitoring were complete and all was normal. She was doing well on the CPAP too and so the plan was to gradually reduce the pressures and oxygen percentage to hopefully wean it off as soon as possible.

Arron did the honours of our first nappy change; changing nappies through the little arm holes in an incubator is definitely a challenge!

Due to the CPAP and the orogastric tube Amelie had in to remove any air from her tummy pushed in by the CPAP, I was unable to start breastfeeding her initially so had the task of trying to hand express my colostrum into a little pot, and then feed the tiny amount I managed to get to her in a syringe.

Almost 16 hours after she was born, we finally got our first cuddles with Amelie, we were anxious about holding and moving her with all the wires and leads attached to her, but the nurses were great and it’s something you definitely get used to.

Throughout the day they had been gradually weaning the CPAP every few hours, and by 6pm one very lovely doctor came in to review how Amelie was doing. She said that because she’d coped really well with the weaning down, she would take the CPAP off completely and see how she was because it could easily be put back on.

The photo of Amelie sat up in the incubator is one I took just as the doctor removed the CPAP, and we finally got to see her face properly for the first time, definitely a special moment I will remember forever.

Amelie continued to do really well and didn’t need any further CPAP, but she continued on the cocktail of antibiotics while the doctors tried to figure out what the infection was. Amelie’s CRP (the infection marker blood test) reached 65 at its highest which meant she needed a Lumbar Puncture (LP) to ‘rule out meningitis’. We told them that we consented to this being done anytime but that we didn’t want to be there for it. There was no way I could watch them stick a big needle in my baby's back.

They attempted the next morning but it was unsuccessful, and so as per their policy, they changed Amelie's antibiotics to the ones they use for meningitis, and thank god they did!

The next day they managed to get the LP done, which showed white cells in her CSF (the fluid around her brain), meaning our baby girl did in fact have meningitis. We were terrified. Meningitis is one of those scary words you never want to hear.

We were reassured that Amelie was already on the right antibiotics and receiving the correct treatment but I was still terrified, what if the antibiotics didn’t work? What about long-term side effects? What did this actually mean for our baby girl?

We were told that Amelie would need to complete a full 10 days of IV antibiotics. The problem was that every cannula Amelie had in didn’t seem to want to last more than a day, and her veins were so tiny and difficult to cannulate.

They gave us the option as to whether we wanted to be there each time they attempted to cannulate her but, being a nurse, I know what it’s like with the pressure of a parent stood over you when you’re trying to do something horrible and difficult like that to their child. So, I said we would wait in the room opposite.

One afternoon it took 3 doctors/nurses and over an hour of trying to get the cannula in. We were left sat in the room opposite, listening to our baby screaming at the top of her little lungs. It was hideous. It’s something that will stick with me forever, and ever since I have struggled with hearing her cry. I think it just reminds me of that day and how helpless I felt.

In hindsight I wish we had gone off the unit for a walk but we just kept thinking, it won’t be much longer so we’ll stay.

My advice to any future NICU parent is if something like an LP/ cannulation etc is being done to your baby, go and have a cup of tea or stretch your legs, don’t' sit and listen to the screaming when there’s nothing you can do to stop it, it’s horrible.

We were really lucky in that the NICU was very quiet when we were there, and it was just before everything changed due to Covid-19, and so we were offered one of the ‘NICU flats’ to stay in. These were essentially ‘premier inn style’ rooms with a double bed, tv and storage space, and our own bathroom, which we could stay in for free, rather than having to pay to stay in the private room on the ward. The rooms were amazing and we will be forever grateful to the ward sister who arranged this for us.

After a few days, the doctors were happy that Amelie did not need continuous monitoring anymore, and so they told us that she could ‘room in’ with us in our little flat. We were so happy as it was one step closer to normality, it meant that between doses of antibiotics and observations we could all be together as a family.

We tried to make the room feel as ‘homely’ as possible, I got Arron to bring in my own pillow, blanket and towel, so much nicer than hospital linen! My mum bought in some nice homemade meals and puddings so that we weren’t living solely on ready meals, and we just tried to make it feel as ‘normal’ as possible.

The future:

After 10 days of antibiotics the doctors told us we could take our baby girl home. This was also the day I got my MRI results and got the all clear for my own health so it was a very emotional day, but this time for very happy reasons. We could finally try and put all of this behind us and start our life as a family.

In regards to the long-term effects of the meningitis, Amelie had to have a more advanced hearing screening when she was a few weeks old which she passed with flying colours. She will also have long term neuro - developmental follow up to assess whether the meningitis has affected her in any way.

She’s currently doing amazingly well and so I try not to worry too much about it. We’re just so amazingly thankful to have our happy and healthy baby girl.

Thinking of others:

In comparison to a lot of other families, our NICU stay was a short one.

The day we went home, I was so happy and excited, but also really felt for the other families still there. The families who’d got there before us, but still weren’t able to take their babies home.

We were also very lucky that Amelie was born just before lockdown and that we were both allowed to stay in the unit with her and for the first few days we were even allowed visitors too. I can’t begin to imagine how tough it’s must be for anyone who’s been in NICU during lockdown.

To any past, present or future NICU parent, you’ve got this. You’ll have good days and bad days, but seek support from friends and family and take every opportunity you can to be involved in your baby's ‘cares’ to try and establish and maintain some sort of normality. Having a baby in the NICU is HARD and its okay to admit that and ask for help.

Thank you for reading our NICU story.

With love and best wishes from,

Amber, Arron and Amelie.