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I am a 33-year-old mother of two boys, aged 6 and 5 years old. My younger son, born in 2017, was admitted to KKH NICU. He was stable enough to be discharged from the NICU at 68 days old and we brought him home while he was on breathing and feeding support.
The start of our NICU journey was an intimidating and fearful one. Apart from having to cope with my son’s often-fatal congenital birth defect which was diagnosed prenatally, the sight of having my baby taken away from me and straight to the NICU immediately after birth was beyond what I could prepare myself emotionally for. After birth, it took the KKH medical team several hours to stabilise my son in the NICU. My husband and I reunited with our son at his bedside as soon as he had settled down. Truth to be told, it was a very heart-wrenching moment for us when we first saw our son being hooked up to many monitors and equipment. But deep down in our hearts, we knew these support were exactly what our son needed for his survival. In the months that followed, it was a roller coaster of emotions as we witnessed our son fighting against the odds that were stacked against him. It was not always a bed of roses during our time in the NICU. We stood by our son when he was fighting for his life and celebrated with him during his triumphs, no matter how big or small. Through it all, we are grateful to have the KKH NICU team with us as they offered us encouragement and support every step of the way.
Looking back on my son’s KKH NICU stay, several things have helped us to cope with our journey from the start.
Open communication with the medical team
Even though I was a second-time mother myself, nothing could prepare me ahead for my first NICU experience with my younger son. My husband and I made sure that we maintained open communications with the medical team and asked simple questions such as “Will I be able to hold my baby after delivering him?” The medical team played a huge role in managing our expectations and, although it still was not easy, we were at least prepared for the situations that came up.
Arrangement of logistics
My husband and I took turns to keep our son company by his bedside. Aside from dealing with the emotional pain of having to leave the hospital without our newborn son every day for the first few months of his life, it was also taxing on our relationship as we had to make logistical arrangements for our daily visits. This was all done on top of having to also care for our elder son who was just over one year old then. There is no hard and fast rule with regards to the amount of time you should spend by your child’s bedside in NICU. From our experience, the amount of time we saw other families spending in the NICU varied drastically too. While we hardly saw some families, we also noticed that some families made sure to have someone by their child’s bedside for the most part of the day. Many working parents also could not come by until after-work hours.
As difficult as it might have been, I found that physically being there with my son in the NICU helped me to bond with him even though he was not ready to be cradled in my arms. I also found great joy in witnessing his daily progress and took the time to document these precious moments in my journal. These moments are invaluable and have now become part of the memories we have shared in my son’s growing-up journey.
Every NICU experience is unique
Somehow or rather, everyone knows someone who had a child in the NICU. The stories that we hear from these experiences are usually comforting and uplifting. It might be worthwhile to understand that these stories should not invalidate any emotions you might feel while embarking on this NICU journey with your child. Every NICU experience is unique in its own way. You have the right to experience fear, anxiety and insecurities associated with having a child in the NICU and these emotions should not be taken away from you because of other families’ experiences.
Talking to other NICU families
While families and friends can offer support and encouragement along the way, no one can truly understand what you are going through except a fellow NICU family. When I felt that we were having it rough, the NICU mother sitting next to me had it worse. That said, the NICU is a place with very complex emotions. While some cases are heartbreaking, others are inspiring. I found that my emotions were much better managed by talking to fellow NICU mothers. Indeed, it felt awkward and invasive when I first initiated a conversation with fellow NICU mothers who were in the same NICU cubicle as I was. But the awkwardness soon wore off and we started to forge a very special bond simply because we are all going through the same journey. We genuinely shared each other’s joys and sorrows, and helped one another along the way whenever possible. On the day of my son’s discharge, many NICU mothers came by and offered their well-wishes, with some even shedding tears of joy for us. It was a truly special moment.
Look for the silver linings
Every case is different in the NICU. While some families had a shorter stay than ours, other families could be longer. And tragically, not every baby survives in the NICU. Instead of being hard on yourself, I find that it helps to take the NICU journey 'one day at a time'. When no one was even sure if my son could survive his life-saving surgery, I made sure to treasure every moment that I had with him, even when I could only watch him from his bedside. I looked forward to every chance that was given by the doctors and nurses for me to assist in his diaper change and milk feeds (via a feeding tube). Simple tasks like these allowed me to interact with my son and that gave me a huge sense of fulfillment.
At 30 days old, I cradled my son in my arms for the first time since his birth. It was a monumental moment for every one of us in the NICU. As he was still attached to several monitors and equipment, it took a combined effort from several doctors and nurses for this skin-to-skin contact to be made possible. Although I ended up holding my son only for a few minutes, I would not change anything in the world for that brief moment.
Throughout our NICU stay, the doctors and nurses played pivotal roles in imparting us with skills that were necessary to care for my son after his discharge, especially since he was brought home on respiratory and feeding support. During our caregiver training sessions at the NICU, the doctors and nurses were always around to answer any questions we had. They constantly imparted us with new knowledge and provided us with a wealth of tips relating to infant caregiving needs. It was daunting for my husband and me when we started to learn about the handling of our son’s equipment and his feeding tube. But with all the guidance from the nurses during our hands-on session, we soon gained confidence in doing so. After much practice, things became more manageable as we better understood our son’s cues and temperament as advised by the nurses who took care of him.
When it was really time to bring our son home, my husband and I were confident enough to handle our son’s care. Follow-up home visits by the homecare team played a huge role in easing our transition from hospital to home. They also gave us the assurance we truly needed by reaffirming us that our son was well cared for at home.
My son is now a happy and active 5 year old child. While I would never wish for any other family to experience a NICU stay, I have come to appreciate the fact that our very own NICU journey has taught us many, many invaluable lessons in life. The memories of our NICU stay have been internalised as memories that are unique to our little family. With this NICU journey, we were provided with endless reasons to give thanks and to express our gratitude to all the medical staff who have made my son’s survival possible. Looking back, it was indeed a sea of emotions in the NICU. I felt the highest and the lowest in my life when we were there. While there is often pain, fear and despair behind those NICU doors, there is also definitely a lot of love, strength and courage.
And finally, to the person who is reading this: always remember, with hope, the odds do not matter.
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