Thoughts for NICU nurses

Dear NICU nurses,

Words would never be enough to express our gratitude for taking care of Aurora and Victoria throughout their journey in NICU, and for helping them grow. Therefore, I will only say ” Thank you!”.

Thank you for teaching me about a different kind of motherhood,

For guiding me on how to do the necessary things for my babies, although they seemed so confusing and difficult to me

For every called answered in the middle of the night and for your reassurance. It was the reason we could have some sleep

For every feed given to our girls

For every nappy changed

For every touch given to them when I was not able to see them having the cannulas and long lines inserted

For answers to the weirdest questions a parent can ask for the first time in NICU

For every photo taken of our babies during the night and the lovely message on the back

For listening when we felt we needed to talk to somebody

For all the encouragements which built our confidence

For showing how special the tinniest babies are

For giving our girls the first baths

For sharing our sorrows in the darkest times and for celebrating with us every little progress, every single milestone

For all the lullabies that you sang to make Aurora and Victoria fall asleep

For every single tape changed on their faces

For mentioning us in your prayers

For the times your hearts almost jumped out of your chests

For those days when being only on tiptoes

For every smile that lit up our day

For hiding your fears away from us

For every tube inserted to our girls

For keeping our hopes alive

For the precision, you gave the medicines with

For teaching us that nurses don’t just give injections, but they are doing so many other essential things, such as saving lives

For sharing with us your beliefs, your traditions 

For helping our babies before we would even think there was something wrong

For being our voice when we could not speak

For keeping in touch and ask about Aurora and Victoria even after we left NICU and

Thank you for your empathy, kindness and dedication!

As parents, we should have done most of these things on our own, in a different way. However, you were there supporting us, making sure we do the right. We have been lucky and honoured to meet and learn something from all of you, but the most important, it was a blessing for Aurora and Victoria that you took care of them.

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Learn from the tiniest

“It is health that is the real wealth and not pieces of gold and silver.“ said Mahatma Gandhi. However, sometimes it might take longer to realise it is true.

Preemies are very fragile, without strong organs to make them capable to survive by themselves, and with a weak immune system that does not help them to fight with the viruses and infections that are around.

It was a Monday, and Aurora and Victoria were two weeks old when a nurse called and said that Aurora’s right lung collapsed and she had to be intubated again. It was terrifying to think that something terrible could happen. After specific investigations, the doctors told us she has sepsis — a dangerous infection. For a preemie, even a mild infection is life-threatening. Everybody said that the journey through NICU is with ups and downs, and we had to get used to it. Aurora was treated with antibiotics, and we hoped she would get better, but unfortunately, she did not. She kept being very poor and her breathing was getting worse each day. The doctors tried different antibiotics, but nothing showed to beat the infection. She was still intubated, in 100% oxygen and nitric oxide, to help dilate the blood vessels in the lungs. It was devastating to see her puffy, with a changed colour and all covered by wires.

After doing further investigations, the doctors discovered that additionally to sepsis, Aurora also had CMV. All these things damaged her lungs dramatically. The doctors use to say she had “baggy lungs”, which means they did not have the shape of proper lungs. During this period, we experienced the feelings of helplessness, despair, pain. It was heartbreaking letting her in the hospital, not knowing if next time we will come she will still be alive. One night, around 2 am, the doctor who took care of her, called us and said that, again, she was very sick and they had to put a cannula in her head. At some point, she had all the medicine that she could have, everything could be done for her was done. We could only pray and hope for another miracle. The doctors told us she might not survive, and if she does, she will need a tracheostomy to help her breath. I was so scared thinking that we might lose her, after such a difficult time, after all the battles she already won. Nothing could console me. I just wanted her to live, with a tracheostomy, or with anything else. I would have done and given anything if something could make her better. At that time, I realised that there are situations when it does not matter the social class, education, background or any achievement. I understood what other parents who have terminally ill children feel. I could imagine what parents who lost their children think.

We received very much support from the staff at this time and also, excellent advice that went to my heart, and I always followed. One of the doctors, told me to talk to Aurora as much as possible, because, although she is so sick, her brain is growing continuously, and she needed to hear people talking, not only the machines alarming. Before that, I just cried and suffered seeing her like that. She did not even want to be touched. If I was putting my hand on her, the saturation level was going down. So I started to talk…about what I felt at that time, about how much I wished she could survive, about anything came to my mind…and sing, new songs, old songs, any song I thought I know, even if I could not remember the words. Same did my husband and our daughter.

After 33 days of being intubated, Aurora started to improve. We all have been surprised and amazed by her will to live. She was just 1.5 kg and had an immense strength. I felt so proud when the staff was coming to congratulate her for coming off the nitric, the ventilation and morphine. NICU is a place where the smallest progress is celebrated, and we had great people around who shared both our sadness and happiness. Later on, a nurse that often took care of Aurora, said that: “She is such a little miracle. I have rarely seen a baby fight so hard.”.

On the other hand, Victoria was intubated for 23 days, but quite stable. She also had CMV, even higher number of copies than Aurora, but it did not do any harm to her; therefore, it did not require treatment. She had steroids to help her come off ventilation, but they did not help. Her lungs needed to grow more. After two trials, she managed to stay on biphasic and then CPAP.

After they were clinically better, I could finally cuddle both of them, at the same time. Soon after, they were moved to Whittington Hospital, our local hospital, on 14th November 2017. We were unfortunate to say goodbye to the great team that worked so hard to keep our girls alive. However, just like in any other situation, we needed to adapt to changes.

I am sure that every person, at some point in life, is passing through a difficult moment. Weather is economic problems, familial or career. However, as long as you are healthy, nothing is lost, because you can get up when you fall, fight, and try thousands of solutions that can take you where you dream to be.