For NICU Awareness month, our CEO Kim tells her story.
When you think of a NICU ward, you tend to think of tiny, premature babies lying in incubators.
At 37 weeks pregnant and being induced for high blood pressure and a ‘small’ baby, I never imagined spending the next three weeks the next 3 weeks of my life in the NICU ward at St Marys in Manchester.
Did you know that up to 1 in 7 babies need to be admitted to NICU because they are sick, underweight or premature? Whilst Prematurity is the most common reason, full term babies are admitted too, with issues such as respiratory conditions, low blood sugar and jaundice. And there’s the tiny 2% of births that my baby fitted into; those needing lifesaving surgery due to a congenital anomaly or condition.
Orion was born with Imperforate Anus; an “anorectal malformation” which affects 1 in 5000 births across the world. He was born without an anus to poo out of, so he was unable to feed or pass the important meconium until he’d had emergency life-saving surgery. Everyone was under the impression he was going to be a healthy baby as nothing had been picked up on my scans, including the anomaly scan at 20 weeks (where we were told we were having a girl!).
My induction did not go to plan and I ended up with an emergency C-section. After lifting him out, we heard cries but what followed next was totally unexpected.
My husband was invited to see the baby and came back white as a ghost.
“We’ve got a boy!” He said, which was the first shock 😲 and “the doctors said he doesn’t have a bum hole”
This didn’t make sense to me, I was still in a sleep deprived state full of different drugs and stuck on still hearing we had a boy!
As soon as I saw him, none of it mattered. I fell in love. The first thing I noticed were his big milky grey eyes, and I was so glad I finally (but briefly) had my baby in my arms.
At this point, things started to ramp up. I had become quite unwell following losing lots of blood during labour. It was in recovery that someone came to me and my husband and told us that the baby would in fact have to be taken to St Marys in Manchester as he needed surgery. He would need to be transferred via Ambulance in a special incubator in the next 2 hours. I was able to see him again for five minutes before he got transferred; my body was in shock but I held it together to see him.
I then went back up to the postnatal ward, where I was put in a bay with other mums and babies and offered tea and toast like nothing had happened. Listening to the babies around me cry reminded me I was not with my baby and I struggled with this. It is not normal to be separated from your baby moments from birth, we didn’t even get the golden hour or first feed! I couldn’t wait to be reunited with my baby.
All I remember about the rest of that day is giving permission over the phone at 11pm for Orion to have surgery and have a colostomy bag fitted, so he could feed and finally have some milk.
The next morning I hoped desperately that I could be discharged or transferred to my baby. Unfortunately I had a Kidney injury due to dehydration, requiring antibiotics and was told I needed to stay in Bolton.
I told Adam (Orion’s dad) he needed to get to the baby as fast as he could as my heart could not bear the thought of our baby being alone without us in his first 24 hours of life. I was moved to a side room and that’s where I would stay for the next 4 days! It felt like I was in prison, I just couldn’t understand why I wasn’t allowed to be transferred. Luckily, I had my own mum and dad with me; they had travelled 200 miles to be with me after the birth. Never have I needed my mum so badly as then!
Once Adam arrived to Manchester to see Orion, he was able to hold him properly. The medical team briefed Adam on his condition and the impact it would have on our lives, including Orion requiring more surgeries later down the road.
They spoke to me and ask me how we would like him to be fed, and of course I had said I wanted to breastfeed him – the thought of me getting there to the hospital and being able to put him to my breast was the one thing that was keeping me going. St Marys were amazing and explained that if I was able to express milk for him, they would show Adam how to tube feed him through an NG tube, so he didn’t start to get bottle / teat preference. It was a really great example of us as parents being involved in his care and not have these choices taken away from us.
Adam had video called me so I could see him, and I remember that was the first time I tried hand expressing my milk. I had chosen Bolton hospital to give birth in because of their infant feeding team – my wonderful friend Kirsty happened to be on shift that week and she had helped me hand express some colostrum whilst I was being induced, so I knew the technique. And once I started, I couldn’t stop! I think the pure oxytocin from thinking about my baby and seeing my husband hold him was enough to make my milk flow and flow.
At first, it seemed like I was producing too much, but then Orion started to enjoy his feeds, and by day 3 he was needing 65ml per feed and the pressure was on to produce more and more each time. I will talk about this more in my blog for BOOBS but I was then given my own pump to have at my bedside so I could pump and produce the amount of milk my baby needed. It was so strange having to think about pumping when all I had prepared for was how to breastfeed directly – through years of work at BOOBS but also during my pregnancy.
Getting to NICU
I finally arrived in Manchester, by ambulance on May 24th at 4am; it had been decided that I still needed IV antibiotics, but I was well enough to be transferred. By 8am I was walking on to that NICU ward for the first time. Orion had been moved to a room where most of the babies didn’t have ventilators and some babies, like him, had only a cot and not an incubator.
And so that little square of the hospital became my focus for the next 3 weeks. When I first saw him, I became overwhelmed with emotion; he was still attached to so many wires and he was being fed glucose to keep his sugar levels up in between 3 hourly tube feeds and ‘cares’ which involved checking his stoma output and measuring it to make sure he wasn’t losing weight or too much fluid.
It didn’t feel real that this was my baby they were talking about – it felt like I was in a dream for those first few days in NICU where we were visited by what felt like every professional under the sun; from family support workers to midwives (checking on me) to the consultant and doctors who checked on him everyday.
When I held him to my breast for the first time and fed him, it felt so natural, so right and like everything I had imagined – just the feeling of my milk flowing for the first time and seeing him gulp it like he was the hungriest baby in the world. It was pure love and magic!!
Soon though, we were under pressure to make sure Orion didn’t lose too much weight and was taking enough milk so he didn’t lose too much fluid from his stoma. I got discharged from St Marys a couple of days after arriving, as they had found me tablets I could take.
Crazily, I was so determined to breastfeed that after being discharged, we got offered a room for the night in the NICU ward and I thought I was going to be able to get up every 2-3 hours to feed him. I finally left the ward at nearly 1am and at 5am I was woken up by the nurses calling me and asking me to go to feed him. Blearily, I traipsed down the corridor and into the room where I thought Orion was, only to be met with a very confused nurse saying ‘hmm no we didn’t call you, he’s just been fed!” so I went back to bed, only to get another call 5 minutes later asking where I was. It turned out I had gone in completely the wrong room and had sat down to feed the wrong baby!
It was after that incident that Adam and I had a very frank chat and determined that I was so sleep deprived and couldn’t manage the pressure any more of feeding him my milk day and night. I hadn’t slept more than 2 hours at a time since I had arrived on the ward at Bolton 15 days earlier and had been in a hospital environment with not much outside time for all that time. So we spoke to the nurses and let them know that we wanted him to be fed formula milk overnight and that I would be back early in the morning to feed him breastmilk.
After my one night at home, we were extremely lucky to get called by Ronald Mcdonald House and be offered a room to stay in next to the hospital. Ronald Mcdonald House Charity is a wonderful organisation offering rooms, kitchen and a ‘day room’ for parents who have sick children in hospital and are away from home. Adam had managed to get us on the list because I was breastfeeding, had a c-section and would have been spending over 2 hours on the bus each day going back and forth.
This meant I could be on the ward from morning until night, next to Orion’s bedside on a reclining chair. I was lucky enough to have a plethora of friends and family who wanted to visit – but none were allowed to see Orion because of the NICU room rules. We settled into a kind of weird routine of seeing the doctors, doing his ‘cares’ , feeding him, and me attempting to go out for ‘lunch’ mid-afternoon for a break – either by myself or with anyone who was visiting that day.
My auntie came all the way from Peterborough on a train to see me for just 3 hours!! I had to time it just right with a nap – or try to because inevitably he would want more milk upon waking and I tried to save my precious expressed milk for night time. In the evening Adam would join us after work and we would take turns holding him, singing, reading and doing the ‘cares’.
The week passed by in a blur of doctors, professional visits and hours upon hours listening to the sound of the alarms in NICU from both Orion and the other babies. By week 2, the stoma team had been round to talk to us about going home – because Orion was otherwise healthy, we just needed to be signed off as ‘competent’ at changing a stoma bag! The first week or so I panicked every time I needed to go near it, and got flustered when trying to use a syringe to get his output out of the bag, but the nurses were so kind and helped me a lot.
That weekend my parents visited and were able to hold Orion for the first time. My mum and I practiced opening and closing the stoma bag, and discussed how we would empty it at home – because in reality we wouldn’t be needing to empty it with a syringe. My mum also showed us how to cut the stoma bags to his size; but me being left-handed and there being no such thing as left-handed stoma scissors this was very difficult. So Adam agreed that this would be his job! At the start of week 3 I told the nurse that I was determined to get signed off so we could go home. We were finally ready.
Going home with our warrior
The day we went home was also the day we registered Orion as a real person, so he was able to graduate from ‘baby’ to ‘Orion’ officially!
After waiting for what seemed like an eternity for them to do final checks, we nervously got him dressed for the outside world. If anyone remembers last summer, it had been a heatwave outside which we were almost totally oblivious to, as the NICU ward was kept at a constant temperature of around 18-20c for all the babies. He looked so tiny in the romper and socks we dressed him in!
We eventually got him in the car seat and I was able to take the picture of Adam carrying him that I had longed for from day one. As we posed for a picture outside the ward, we noticed it looked like he was doing a rockstar pose with his fingers!!
Going home was hard, but we feel very lucky that we were able to go home after just three weeks. Some families there spend months in NICU and then even more time on a specialist ward with their children.
Having a sick child changes you. It ignites something inside you that is purely primal and instinctual. It’s a feeling of how you would do anything, anything in the world for your child to be healthy and you live your days in an adrenaline-fuelled way, with cortisol levels as high as they could be, because you are on alert all the time for there to be something else wrong.
In some ways I am glad this all happened at the start of our journey, and not several weeks or months down the line. There are small blessings too – like the fact that Orion will now sleep through anything loud, possibly because he spent the first 22 days of his life learning to sleep through the sounds of the alarms and monitors in that NICU ward.
Our hospital journey isn’t over, but that’s for another time. Orion is due to have surgery again very soon, this time for a stoma reversal. I have met many parents online whose children have got the same or similar condition and yet each of us have a different story about NICU, about their journey so far.
My heart goes out to anyone who is currently in NICU with their baby or who has had an experience such as ours. It is so important that we raise awareness of what happens in NICU, including the amazing care the nurses give everyday. I had no clue what would happen if my baby had something wrong, because you don’t get told about it during pregnancy.
If you are in Greater Manchester and are now home from NICU, you can reach out for support from us at Visit from the Stork by messaging on social media or emailing hello@visitfromthestork.co.uk and we can signpost you to other charities such as Homestart, mental health services, Infant feeding teams or your local Sure Start services.
We also work in partnership with Motherhood and Milk, which is a fantastic little group, run by mums and their whatsapp chat is available day and night to talk to other mums going through various issues with their babies.
If you are worried about your finances whilst in hospital, or worried about preparing for your baby to come home, we can help with baby essentials. Ask the family support worker on the ward to refer you to our Stork Support project. You can collect your items from a Sure Start centre, or we might be able to arrange delivery to you when you are home or due to go home.
If you are still in hospital, the charity Spoons offer support both on the neonatal wards and in the community.
