NICU in a nutshell – A world no one prepares you for
Exhausted yet exhilarated, overwhelmed and fearful yet hopeful, NICU is the never-ending rollercoaster of emotions.
Our baby girl, Lilah, was here. 3 months early and in a wild rush to make it earthside. She was relatively stable, her lungs were strong not needing to be intubated, only requiring CPAP for breathing support. Her stomach was not ready for milk, but I started expressing colostrum straight away, so it was ready for her when she was ready. This commenced a 2year feeding journey, expressing breast milk as well as direct breastfeeding, to help our baby grow.
Lilah was bruised from head to toe from the rough delivery, but she was perfectly formed, with the longest fingers and the toes and the longest limbs. She was a great weight for her gestation, so overall, she was quite healthy for a 27 weeker, just very early and needing to continue to develop. Watching your baby grow behind the glass of an isolette is the strangest thing. Like having a window into the womb. I sorely missed feeling connected to her in my body knowing I no longer had the chance to carry her with me wherever I went.
I was sore, I was bruised, I was bleeding, my uterus was contracting. It was hard to comprehend what my own body had just been through and all the pain, worry, grief and loss from your own journey is pushed aside, because in those moments, the single most important thing is watching your baby fight for every breath and learn to live in the outside world.
By day 4, my milk had come in and boy oh boy was that a whole new experience. Like having 2 heavy bowling balls attached to my chest. Trying to get comfortable in bed was a nightmare and then laying there, feeling this big, empty hollow in my womb where my baby was once safely growing was just brutal. It is not normal to birth a baby and then find yourself without them, even though they have survived. It is hard to describe the feeling of detachment, the feeling of guilt. “Why did my body fail her?” “Am I not a good mother?” “What did I do to deserve this happening to my baby?” So many questions and so little time or energy to unpack them all.
Lilah was born close to midnight on a Monday, and I was discharged by the Thursday morning, even though my pain was severe from having a classical C-section and my premature baby was fighting for life downstairs. Another brutal blow to add to all the trauma. Having to travel 30 minutes each way to and from the hospital, 7 days a week to be with my baby, was stressful and painful. I felt every single bump in the road. I was exhausted and we still had such a long road ahead of us.
I was expressing every 4 hours around the clock. There was very little room cot side, so I would get the pump and sit in the “milking room” feeling like a cow expressing my milk. There was not a lot of guidance or advice about the ins and outs of expressing. If only I knew then, what I know now, my expressing journey may have been a little smoother and a lot less taxing. Breast milk is so important for the gut health of these tiny miracles, especially in regards to necrotising enterocolitis (NEC). It is comforting to know that donor breastmilk is available, so that if, for whatever reason, you are unwilling or unable to express, premature babies still have access to breastmilk to assist their development.
One of the worst things you can say to a new mum of a premature baby in NICU is “well at least you can get a good night’s sleep without a screaming baby waking you up through the night.” Never in my wildest dreams, did I ever imagine having a tiny newborn baby fighting for her life, that I had to leave behind in a world I did not even know existed, have to wake up to an alarm rather than a scream, strap a breast pump on my sore, engorged boobs, stress every moment about what was happening with my baby and pray that she was ok, all whilst trying to navigate this new chaotic world that no one prepared me for. Give me a screaming baby to cuddle and kiss and feed and change any day, over how my introduction to motherhood was going! I had not even been able to hold my baby yet or kiss her beautiful head or smell her. All I could smell was the stench of hand sanitiser and all I could hear was the sounds of the beeping alarms from all the equipment, which haunts you well after you are home for the night, trying to navigate that “amazing sleep” your unsuspecting friend or family member thinks you have the privilege of getting.
The neonatal intensive care unit (NICU) is the epitome of swings and round-abouts. Almost everything is out of your control, and you have to place immense trust in people you have never met. You are not able to touch or hold your baby without asking and then when you are able, you fear you may break their tiny bodies. It can be a challenging time building that connection with bubs, especially when they are swiftly taken away after delivery. I only got a glimpse of Lilah, I was not able to hold or touch her or even see her properly until hours later.
There are the highest of highs and the lowest of lows in the NICU journey. You find yourself celebrating the seemingly smallest of things, like being able to kiss your baby’s head for the first time or having your first cuddle. I will never ever forget those incredibly special moments, moments that other parents often take for granted when a baby is born healthy. You cherish the smallest of moments because the journey is so unpredictable, you do not know when your next cuddle may be, it is not just a given. It is so important to document these special milestones, by journaling and or taking photos. It is a therapeutic to look back on, especially when things are tough, to remember how far your little miracle has come. There are beautiful milestone cards specific to the premature journey such as the ones from Miracle Mumma. Things like these really help you to celebrate this kind introduction to motherhood. It may not be “normal” but boy is it still special. You witness miracles daily!
The journey can often feel like 2 steps forward, 5 steps backwards. Some babies sail through NICU whilst others battle at every turn. It is so unpredictable. It is difficult not to start to compare to those around you as well as take on others stress and emotions. It really is a world like no other. It is difficult to really comprehend the size of these tiny miracles. Family and friends would see photos of Lilah, and then by the time they would make it into the hospital to visit, they would be gob smacked by just how tiny she was (even though she was growing by the day). It is funny how quickly your perception changes. I would walk past the full-term babies in special care and almost be shocked at their size. 3 or 4 kilos and wearing baby nappies and even clothes…. they looked old enough and big enough to be walking and talking!
2 weeks into my journey with Lilah, her ride was getting a little bumpy with feed intolerance, concerns around the possibility of bowel perforations, the need for blood transfusions, the list went on. With all the trauma and exhaustion, I had become very run down and vulnerable to infection, picking up virus which meant I was unable to visit NICU, due to the vulnerable nature of the occupants. Terrible timing but not surprising given the circumstances!!! Staying away from any premmie parent if you have even a sign of a sniffle is one of the most important things you can do to support them. Having to stay away from your baby, knowing things can change in an instant is the cruellest form of torture. Supporting and nurturing your immune system is a must and this is one way friends and family can show their support, by making and delivery healthy, nourishing meals, because trust me, this is close to last on your list of things that seem important in that moment.
Lilah always seemed to teeter on the edge of disaster but thankfully never took the leap. She had a small brain bleed that did not cause any issues. She did have a PDA but it closed on its own. There were a few times when it looked like she was developing sepsis but then turned the corner. She developed retinopathy of prematurity but it stopped in its tracks before laser surgery was required. She had a lot of feed intolerance and there were concerns of bowel obstructions and perforations, but we made it through unscathed. At the time, it was the most terrifying and stressful experience of my life, but it was not until years later with our daughter Mahlia, that I truly understood what a horrendous NICU journey actually looked like. Not that you should ever downplay the feelings that arise in any given moment. Just walking through those NICU doors is terrifying. Yes, lifesaving miracles occur behind those doors, but any single intervention that is needed is stressful, no matter how seemingly small. It is so important to acknowledge that, and it is one of the reasons that it should not be so taboo to speak about NICU life. Unfortunately for some of us, that is our introduction to parenthood and sharing our experiences no matter how brief, is one way to help others not feel so alone and isolated.
By 39 weeks, Lilah was ready to come home, one week before her “due date”. It is often the expectation that most premature babies will be in NICU until around their due date. With Lilah being 3 months early, we were told to expect to be in NICU for around 3 months. Some babies breeze through faster than expected, others spend much longer depending on the complications they face, and sadly, some babies do not make it home. Every journey is unique.
Lilah came home just over 3kgs, line free, and fully breastfed with expressed milk top ups via a bottle. We were ready to start our journey at home as a family of 3, a love bubble that we felt eternally grateful for. Our very own dear little miracle, home with us where she belonged!
