Today — November 30 2018 — is Thank U NICU Day, a special day during NICU Awareness Month where families host a morning tea in units across Australia to give thanks to the staff who care for our smallest and sickest babies. To give you some insight into what it is like to be the parent of a NICU baby we are sharing this blog post. This is Jane’s story …
NICU stands for Neonatal Intensive Care Unit. It’s where newborns go if they are unwell, or born prematurely.
It’s difficult to describe NICU to someone who hasn’t been there, so I thought it would be good to share my experience in NICU, with my daughter Milla, born eight weeks premature.
Most people say the day they gave birth to their child was the best day of their life. In theory I could say that, but the reality is that it was one of my most terrifying.
Two days after my waters broke, at exactly 32 weeks, I was rushed into the operating theatre for an emergency c-section, after monitors showed that my daughters heart rate dropped during a light contraction, and didn’t come back up.
As the nurses and doctors ran down the hall with my bed, people jumping out of the way, I thought, this is it. My baby is going to die. It felt so surreal, is this really happening? A week ago I had just gone on maternity leave, with two months ahead of me to prepare for my baby’s arrival. My baby shower was supposed to be the following week. How can this be happening?
As the doctors and nurses bustled around me, getting me ready, I told them, “Her name is Milla”, it seemed so important at the time that they knew her name, who she was.
I remember the first time I saw my daughter, the doctor holding her above the curtain, for a brief moment, before she was rushed over to the waiting paediatricians.
I remember hearing her tiny cry, and looking at my husband as we both burst into tears.That’s her! Our daughter! I don’t remember much else of that day, I assume I must have been in a bit of shock. My husband went up to NICU with Milla, while I was put back together, and stitched up.
Later that day I learned that Milla weighed 1.8kgs, and was 45cm long. So tiny, yet so strong.
She was connected to a machine to help her breath, had a tube through her nose to feed her, two drips connected, and so many monitors attached to measure her heart rate and oxygen levels. I would stare at her, and think; “This is my baby”. Logically, I would think it, however it was difficult to actually feel it. She didn’t feel like mine. I couldn’t hold her, feed her, I could barely even see her through all cords and equipment she was attached to.
The truth was, I was scared of her. I was scared to touch her, I was scared to hold her, I was scared to even be alone with her, without my husband. I’ve not told many people that. It sounds ridiculous, to be scared of your own child.
She was just so tiny, and attached to so many things that were keeping her alive. I still remember the feeling of anxiety I would experience whenever I held her. What if I was holding her wrong? What if I knocked her breathing apparatus? What if I accidentally pulled out her drip, or one of the many monitors she was attached to?
What if I did something wrong, and she died?
I’m ashamed to admit that I used to make excuses not to hold her. I regret that so much now, I know I missed out on bonding with her as much as I could. I wish I’d spoken to someone about that at the time, someone who could have reassured me that she was not as ‘breakable’ as she felt to me. I think I will always feel a sense of guilt about that.
Another hurdle I found to bonding with Milla, is the feeling that she didn’t really belong to us. We had to ask permission to do anything, to hold her; to change her nappy; to bath her. The majority of the day we would spend sitting next to herhumidity crib, just staring at this beautiful tiny baby, that we so desperately wanted to get to know, but didn’t know how.
Gradually we worked out our own ways of feeling more like ‘parents’. Every night before I went to bed, I would phone the hospital and check on her. First thing in the morning I would do the same. When I arrived at the hospital, I would pour over her chart, checking her oxygen saturation level, drops in heart rate, temperature, fluid intake and output. We learned what all the different alarms meant on the machines she was hooked up to and when to worry if they went off.
As she grew bigger and stronger, we had a greater role to play. We would ‘feed’ her expressed breast milk through her nasal gastric tube. We would change her nappy, and take her temperature. If she was warm enough, we could bath her. (A two person job, with everything that she was hooked up to!) We learned how to be parents, albeit in a slightly unconventional way.
We were very lucky, Milla was able to come home after only a month in hospital. Many babies spend months upon months in hospital. Some babies never come home from NICU. As difficult, and emotional as that time was, we know how blessed we were, and still are.
Now that she is growing up, that first month of her life feels like a lifetime ago.
She is now a beautiful young girl. To look at her, you would never know all that she had been through, when she dramatically entered the world two months early. It is something that we, as her parents will never forget though.
The emotion, the fear, the anxiety, the tears; many many tears. The amazing people we met, the doctors who perform miracles every day, the nurses who always had a moment to comfort and support all the shell-shocked parents, the other amazing Mums and Dads, just doing their best to parent the only way they can. The feeling of walking out the front of the hospital, holding our tiny daughter, and taking her home, to begin our life together, finally with the three of us under one roof. These are things we will never forget.
The Bub Hub is happy to support the Miracle Babies Foundation
Miracle Babies Foundation is Australia’s leading organisation supporting premature and sick newborns, their families and the hospitals that care for them. You can contact their 24-hour support line on 1300 622 243. To donate visit miraclebabies.org.au.