A different kind of Christmas

Christmas is such a special celebration reminding about Jesus`s birth, but also about the reason for His behind it. In our culture, Christmas is about giving glory to Jesus, bringing families and friends together, about traditions and kindness. The last place someone would like to spend such a particular period is in the hospital. However, it happens.

When we found out Victoria`s and Aurora`s due date, which supposed to be 10th of December, we dreamt for a magical Christmas. However, their premature birth forced our family to be in a hospital. They were three months old, still on a lot of respiratory support, cycling between CPAP and Vapotherm, and entirely fed by NG tube. For these, we did not expect them to come home very soon, but rather hoped they would be stable, without any colds or viruses.

It was a pleasant surprise to see the staff getting ready for the celebration and about Santa Clauses` visit, with beautiful presents. Just like the other parents from that hospital, we received a book about the journey of prematurity, a Nivea cream and some soft tissues. The girls received a knitted blanket, Santa Claus toy and a sweet. For Christmas Eve, my husband was in the hospital, and I was home with Maria. We could not get together because of the winter policy. Next day, both my husband and I took the first bus in the morning and went to the hospital. When we arrived, we found Aurora sleeping peacefully and Victoria awake, like she was waiting for us. They were delighted to continue their period of sleep on our chests. Following days turned into same days before Christmas. Same routine, same sleepless nights, same desire for the girls to come home, but more painful knowing they had to spend their first Christmas in an isolation room, without even seeing outside, without a Christmas tree, but most of all, being so sick.

Aurora
December 2017

Victoria
December 2017

Throughout those days, we realised that we are not the only ones, that NICU was filled with other parents and their children, some of them sick, some of them too small. We realised that nobody is rich or poor, while in the hospital and that we shared the same feelings. And then we thought that it was girls` first Christmas in hospital, but we prayed and hoped for many to come at home, which was very feasible. However, some families were aware that it was the last Christmas with their loved ones. How could somebody endure that thought?

Now, after two years, Victoria and Aurora are beautiful, clever, though and playful girls, who enjoy and get involved in everything means preparation for Christmas, from decorating the Christmas tree, to cooking or singing carols with their sister. Now, we look back and see our dreams reality, our miracles filling our lives with joy. It felt like they will never get here, but they did, we all did.

Aurora, Maria and Victoria (from left to right)
December 2019

From a NICU parent to all NICU parents being in the hospital now, I would kindly ask you to hold on to your faith, to your hope, to your strength. God never gives more than you can carry. This Christmas might be sad, but it is only one of so many to come yet. It is horrible to see your children unwell, but you would never be happier than when they will get better. After everything goes, you will think that there is nothing in the world your children cannot overcome. Look after yourselves. They need you healthy and strong. Your voices are their encouragement song. Your arms are their whole world. Your smiles are their best treatment. You are all they need for Christmas!

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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.