When our twins were born nine weeks premature, we were thrust into a fog of fear, separation and numbness. Looking back now, there are so many things I wish someone had told me to consider doing. Twenty months later, there are things that I think could have helped and other things I wish I had to look back on. If you or someone you know is currently living through NICU, or you are likely to spend time in NICU ,then these are the seven things I wish I could go back and suggest to myself.
1. Keep a diary.
I spent hours every day sat at the twins’ incubator sides or at home in the evenings missing them. Emotionally, my mind had thrown up a brick wall to make me numb to the situation so that I could get through it. But looking back, I wish I had kept a diary. When I say diary, I don’t mean a daily description of my emotions because I don’t think the words would have come out at that point. What I’m talking about is as simple as what I did each day, what time I visited, how much I expressed, what I sang to them, what story I read, what they were wearing, how much they weighed, what their sats were like, how they fed, if we had kangaroo care.
There are so many things which seem so small at the time, but now I would love to be able to remember those small details. That first 33 days in NICU were the first 33 days of their lives, and I have hardly any of it documented. My mind has eroded the details in the process of helping me heal. Twenty months later, it saddens me to not remember these small things.
2. Take video footage.
We took lots of photographs throughout the boys time in NICU but no video, except for two small clips recorded on our phones. I had a perfectly good video camera sat in the draw at home but I never thought ― or maybe I never had the energy ― to root it out and bring it to the hospital. If I could go back in time, I would record as much as possible. The pain of the memories of NICU never truly goes away, but personally I love looking at photographs and those two video clips of the twins just as much as I love looking at images and video of my eldest son. The twins may have been small, there may have been machines and noises, and it may have been an alien environment, but as time passes and the shock wears off, you don’t see that anymore. You just see your children, and I miss not having video of my children.
3. Take size comparison photos.
We never thought to take a photo of the twins next to a soft toy or our hands or something like that, and I so wish we had. As time goes on, you forget just how tiny they were. It would be nice to have a visual comparison as they grow.
I also remember almost being offended when people said they didn’t look as small as they expected when they saw photographs, I felt like that was downgrading how little they were and how hard it was. I know that’s a ridiculous thought and that people were probably actually only saying because they thought it would help, but at the time, my fractured mind needed validation of how small my babies were, how fragile and how scary it was.
4. Have a hobby to pass the time.
As much as you want to be near your baby, NICU can quickly become a boring place. Your entire day hinges around expressing, tube feeds and cares and that’s about it ― unless you’re lucky enough to have some kangaroo care, too. I used to see women knitting, and I wished I had a hobby to pass the time and ease the tension of just staring at the boys and pouncing every time their monitors beeped. I have no idea what my hobby could have been, but I still wish I could have had one.
5. Share honest photos.
I shared very little on social media while the boys were in hospital, perhaps three or four photographs. I was very careful to choose the ones where the twins looked the most “normal.” In other words, the least small or thin and with the least wires on display. I remember consciously choosing not to share the truly honest photographs because I felt it wasn’t appropriate.
I absolutely kick myself for this now because no matter how small they were or how poorly they looked, they were my babies. To me and my husband, they were absolutely beautiful from the moment they were born. We never saw them as not “normal” babies. We never saw their tubes or wires ― just them. I regret that I assumed those who love our family would not want to see photographs of our sons which reflected the true situation.
6. Ask for help.
I was so very proud. I had spent my pregnancy being asked how I was “going to cope” with three kids under two-and-a-half years old. I felt deep down like I had something to prove to the world and to myself. I think, looking back, I let this control my actions more than I realized at the time. Even when I needed help, whether that be someone to give me a cuddle and tell me it would be alright or someone to come and put a wash on or make dinner so we could be at the hospital longer or look after our eldest son, I either didn’t ask or I hated to ask.
I regret this so much. My stupid pride and determination to prove the world wrong, coupled with my belief that to be a good mother I had to be with the twins, care for my son, keep house and recover from my c-section simultaneously, ended up making life harder for myself and my husband. If I could tell a new NICU mom one thing it would be to ask for help when you need it. It doesn’t make you weak it makes you human, and admitting you need help makes you strong.
7. Talk to people about how you feel.
The only person I was ever 100 percent honest with was my husband. In fact, I would go as far to say I only let other people 25 percent in. I never even truly opened up to my parents about how I felt, my fears and my sadness. I had a horrible belief that people expected me to be fine because the boys were going to be OK, they just had to grow. This continued once they were home. I felt that because I still wasn’t coping with what had happened I was failing or there was something wrong with me. For a very long time, the only person I spoke to was my husband.
I know now that I needed to let people in to support my husband and me. I should have been honest when those close to me asked how I was. I should have told the people who love me how I felt even when I couldn’t feel. Perhaps, I could have come to terms with what was happening sooner.
The list could go on, but these are the things that stand out the most to me when I reflect back. Everyone is different. In the haze of the moment, it is easy to forget, so if you are reading this and your loved one is currently living through NICU with your grandchild or niece or nephew, then bring them a diary, encourage them to write and document the small things. Bring them a video camera. Bring them magazines and things to do. Most of all, be honest. Tell them their baby is small. Tell them you know it is hard and sad and that you don’t know how to help, but that you are there for them. Don’t use platitudes, because it isn’t what they want to hear.
If someone I loved was going through NICU, this is what I would do as one preemie mom to another. It’s what I wish someone could have done for me. I truly think it could have helped at the time and even now.
Love An Ordinary Mummy xxx
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