To the NICU Mom,
I know this is not what you pictured. Your baby is surrounded by machines and wires and you have to leave the hospital empty handed. Stay strong because your baby needs you to comfort them even when the incubator separates you and your baby needs you to celebrate every victory no matter how small it is. I know this journey is overwhelming but take the time to adapt to your new surroundings. When the NICU feels like your second home and the staff feels like your second family know that your baby is resilient and so are you. You are a NICU mom and you have got this.
A year ago I became a NICU mom. It is not an easy journey and it is such an emotional journey. I know how a small gesture and some support can make such a big difference at this time so I hope this care pack offers you some comfort. While sitting in your NICU room, watching over your baby, I thought I would share my story with you and what I learnt from being a NICU mom.
On the 14/09/2020 I went into labour and gave birth to my twin girls at 28 weeks. Terri was born first weighing 1.2kg and Mia second at 1.1kg.
It was such a horrible time with covid and I went through the birth alone. I can only imagine how my husband (Jeff) felt being alone outside, just waiting. I am so thankful for our medical team who turned out to be my support structure at the time. By the time I made it to theatre I was fully dilated and was prepped for a C-section. The small gesture from Dr. Slowatek by helping me in theatre meant so much to me. I will never forget his kindness by just holding my hand. I was so scared. This gave me comfort that my babies were in good hands. I am forever grateful to our full medical team.
I remember waking up and lying in my hospital bed and waiting. Waiting for someone to come tell me what had happened and if my babies had survived. I had no idea what to expect and had no idea about NICU. I was so oblivious and ignorant to the journey we were going to embark. It did not quite make sense yet. I managed to see Jeff briefly and remember the relief of hearing that the babies survived and were in NICU. At this stage I thought that is it, we did it and all would be ok. I did not stop to think that they were born at 28 weeks and that they should still be developing in my womb. (Nor did I think of all the challenges associated with this) At this stage I had no fear and felt at peace unaware of the reality I would soon be faced with. This is a raw emotional process to go through. It has taken me a year to sit and write this letter as when I sit to put pen to paper it is hard. I remember the ups and I remember the downs and it still affects me. Hang in there Mommy. You are stronger than you think.
The next day I was taken to the NICU to meet Terri and Mia and I will never forget the shock of seeing these 2 small babies in an incubator on a machine with all the wires. My heart sank and every beep scared me. I was so confused and then all the feelings rushed over me. Why did I go into labour? What did I do wrong? Will these babies survive? The next few hours become a blur. Doctors come speak to you, the nurses come speak to you, there are different specialists and nutritionists who all have a contributing factor or opinion and advise you on what they need. It is so overwhelming and a lot to take in. Slowly it felt everything was spinning out of control. The peace that I felt the day before was gone. The fear soon settled in as I now started to realise my baby girls are only 28 weeks. But yet I could not sit and shed a tear.
My first conversation with Dr. Klaas and Slowatek put me at ease and they corrected my expectations. I remember being told this will be a long process and we need to take it hour by hour. If all goes well my babies can go home in 3 months (December 2020). They explained that they would discuss anything of importance with us. If there was something we needed to know, we would know. This somehow put me at ease and was enough for me. Many people said to me how can they say it like that or only tell you what you need to know but I had a different opinion to work through this journey. I soon realised I needed to stay positive and strong. These babies are fighters and I too need to fight the fight for them. If I don’t look after myself, how can I look after my babies? This process is hard enough as it is when being updated on the challenges and scares that happen in an instant. Do I really need to know every little detail? How would that help me? I decided to shift my focus. I started keeping a daily journal and every day took photos of Terri and Mia to celebrate their life. I found something positive every day that happened or that they did (if a milestone was reached) and chose to focus on this. I know its hard mommy but this gives you such strength to get through these days and this gratitude shifts your focus on what is important. Yes, I was aware of what was going on with their medical condition, when the Doctors were called out in the early hours of the morning and that was hard to process. I also learnt about the machines and their functions to understand what was happening but chose not to focus on all of this but to shift my focus on the positive. This too was challenging as the NICU saying goes, one step forward then two steps back. Many days we celebrated something positive and then they had a set back and that became hard to understand. I kept trying, one step forward every day. Find something positive every day. Soon the hour by hour became day by day that became month by month. I chose to look for and focus on the positive. Everyday we spoke to the girls and read them stories. Not only did I feel this was good and calming for them, this too shifted our focus. I remember on the hard days, we just sat there. The nurses encouraged us to read, they could see this helped us as much as it helped the babies. I appreciated their kindness and efforts. The days we spoke and read to the girls was the days we often got a smile.
Although the NICU can be a scary place, so many special memories happen here too. The best feeling ever was the day we got to hold Terri and Mia for the first time. I remember prior to that how scared I was to touch and hold their hand. There were many firsts in the NICU. Changing their nappy, feeding them, dressing them and basically starting to care for them hands on. Then the bug bites to want to take them home and this wait feels like forever. I was getting so excited to take them home but remember feeling so scared. What was first such a scary place soon became home and a comfort space. How would life be after NICU? Finally, after an 82-day journey we were ready to go home. I remember the excitement and fear I felt this day. I arrived at the hospital to an empty room. The feeling was unreal. As I packed up my bag, the tears rolled down my cheek. We did it I thought. Such relief. I remember being told by the staff, “I waited 82 days to see you cry.” This was such a happy day but such a sad day. You truly leave a family behind and this was hard for me.
This journey and this day stay with you forever. A year later, I think back to this time and the tears still roll down my cheek.
If I look back on my 82-day NICU stay, this what I learnt from being a NICU Mom,
I learnt to trust: I allowed time to accept my circumstances and understand this process. That meant learning to trust Dr. Klaas and Slowatek and their medical team. Trusting their decisions and recommendations gave me a sense of peace and strength. I learnt to trust our Nurses. We may not always understand what they do and why they do it but remember they are on your side and have your back. I learnt to trust myself and I learnt to trust my instincts.
I learnt the importance of kindness and gratitude: Small conversations, support and kindness showed by the nursing team made our NICU stay easier. Love the nurses who teach you well, who help you smile and who love your baby. The kindness of Dr. Klaas and Slowatek gave me peace that Terri and Mia were in good hands. Raymond, who did physio with the girls, always took the time to talk to us and involve us in the process of physio. His kindness made this process easier for us. I learnt the importance of being kind helps strengthen trust and this helped me stay positive and lowered my stress. As the saying goes, “In a world where you can be anything be kind”. I will always be grateful for everyone’s dedication, time and support. After having Terri and Mia, I learnt gratitude for the small things. When the babies gained weight, when they learnt to breathe on their own and when they drank from their bottle learning the cycle to suck, swallow and breathe. Terri and Mia taught me to be grateful for everything.
I learnt to be strong: I learnt that delivering my babies at 28 weeks was not my fault. I learnt strength to accept my circumstances and that connection heals. By staying strong (and positive), I could lovingly connect with Terri and Mia and this allowed them to thrive. Witnessing what my babies overcame each day taught me the strength they too have. Terri and Mia’s spirits were so strong and if they could be so strong, so could I.
I learnt patience: I learnt to be patient and that everything happens in their own time and when they are ready. This was a hard one because it is a long process and you want them to overcome their challenges sooner. You often hear the phrase, let us wait and see. Let us wait and see what the brain scan shows, let us wait and see what the results of the eye test and hearing test is. This was not always easy to accept and I learnt patience. Often you want answers now but some times wait and see is all you can do.
I learnt perseverance: A preemie does not know the phrase “I can’t” and they just keep trying. That is beautiful. Watching Terri and Mia learn to breath taught me the meaning of perseverance. Many times they repeatedly tried to wean off the ventilator or CPAP. They had many trials but they kept on trying. Their perseverance led to celebration.
I learnt hope: You are often given impossible statistics, yet you believe it is possible. I learnt what it means to hope.
I learnt resilience: I watched Terri and Mia go through surgeries and tests with tubes and scars. It is amazing what they can overcome. This taught me what it means to be resilient.
I learnt to not feel guilty: I was one of the moms who could not produce breast milk for Terri and Mia. This caused major stress for me because that is what a mom should do, supply milk. I tried everything from diet to supplements to hand pumping then machine pumping and nothing helped. Milk was coming but not nearly enough. I learnt to understand why and again accept my circumstances. I never gave up and kept pumping and what I could supply I did. I learnt to not feel guilty. My medical team had my back and ensured my babies got what they needed and they are strong happy babies. I learnt you do have options.
Having preemies taught me that sometimes we are on the giving side and sometimes we are on the receiving side. Being on the receiving side is not a bad thing. I am grateful for all the support my family, friends, doctors and medical team offered me a year ago. Strangers reached out to me (and still do) and I appreciate this support. It blesses others to be able to give, so receive with a thankful heart.
Stay strong Mommy and remember you are not alone. You have got this.
If you ever need a chat I am always available.
Lots of love from a Preemie/NICU Mom,
Janice
