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.

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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.

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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 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.

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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 steroid 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 them both Aurora and Victoria, 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.

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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.

 

 

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