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!

Advertisement

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.

About family and emotions

What family means to you?

A family is a place where we find support, kindness, love, magic, guidance, joy or sadness and disappointment. It represents the rope that can take us out of the deepest and the darkest places. Also, the crown that crowns every moment of happiness making it unique, special and long-lasting. We all seek family in our hearts, earlier or later in life. We all want to create ‘’family’’ around us and need somebody to rely on, to share our feelings with and to be comforted by.

Being an immigrant means to make the sacrifice to let your family behind sometimes, no matter how painful it is. Some people are apart from their wives or children and count the days until they will be together again. Throughout our journey in NICU, we met so many parents who were alone, without any support, but also, parents who had a bunch of people to welcome their baby, even if it was a very tiny baby. So seeing these people it reminded us how much we missed our families, not only because of the support that could give us but also because they lost the moment of a life coming to the world, a moment that reminds us about GOD`s power and blessing.  However, a family is not about being together and happy all the time, but also to transcend difficult situations. Moreover, is when we are apart we realise what we mean to each other and enjoy, even more, when together.

Aurora and Victoria spent over 230 days in the hospital, and each hospital had its own rules regarding the visiting time, strict rules were applied for siblings to prevent any viruses spread. At UCLH, in NICU, a level 3 UNIT, the winter policy was adopted on 3rd October 2017, so after that time Maria was not able to see her little sisters until spring would come. At Whittington Hospital, level 2 unit, it was adopted on 12th November, but the girls came in on 14th. It was very challenging to manage to be everywhere, and we almost forgot the feeling of being together, because one of us had to look after Maria, and the other one, to be at the hospital. There were days when Maria did not see her daddy as he used to wake up early in the morning to go to work and visit the girls after work. Rarely, we had time to talk face to face.

In the middle of the winter, I got a cold, and I was not able to visit Aurora and Victoria, so my husband had to spend more time at the hospital. Instead, I spend more time with Maria. On a Sunday, I told her that we will go to pick up her dad and will spend the rest of the day together, and she said: ‘’But I do not have a daddy anymore. Daddy stays only at the hospital’’. It was heartbreaking for me to see how much she needed both of us to be with her.

When the doctors asked about Maria, we told them what she felt, so they allowed her to come for an hour to visit her sisters when there were not too many babies at the unit and she did not show any sign of a cold. It was 4th of February 2018, a chilly afternoon when Maria and I came to the hospital. When we got there she asked me: ”Are you sure I can go in?”. She was so curious to see how much Aurora and Victoria have grown, and I was so excited. For an hour we could look at each other, talk and laugh without having to think what are Aurora and Victoria doing, without feeling guilty for being in a place, but not at the other…After a long time, we felt a complete family again. Throughout that hour we recharged our batteries, filled the empty spots in our hearts and collected memories where we could go back any time we wanted to be together again until the spring came, and Maria was allowed to visit again.

Sometimes, the quantity is not as important as the quality. Little things made with love, dedication and loyalty, are precious and unforgettable.

 Also, because every picture tells a story, please find attached some of ours from that day.

Maria, Aurora and their dad.

Maria and Victoria bonding.

Maria, Victoria (left), Aurora (right) and their dad.

All of us…as a family that we are.

Thank you for reading!

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.