Our journey through neonatal care – Laura’s story

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Laura's daughter Millie arrived 12 weeks early. In this blog, Laura writes about their journey through neonatal care.

When I was 28 weeks pregnant, I was admitted into hospital as my face, hands and feet had swollen up. I spent the next few days in hospital strapped up to a heart monitor with a strict fluid and food intake, a cannula in each hand for various drips and a catheter monitoring my fluid output versus input.

I lost count of the number of times my blood was taken. So much had been taken out of my arms, they started to take from the back of my hands and feet. After a few days of being a human pin cushion I could actually feel when my blood pressure was too high. I would get awful headaches, start to feel sick and my eyes would go blurry. This was the point at which the doctors explained to us our baby would have to be delivered soon, otherwise both of us could die.

Millie, was born weighing exactly 1kg. She cried on delivery which was a huge relief, but we only saw her briefly before she was rushed off to intensive care - 78 days before her due date.

She had a good start to life, and went straight onto CPAP. However, her luck didn’t last long. Millie suffered from a pulmonary haemorrhage and deteriorated rapidly. I became extremely emotional and clingy with my husband - not letting him leave my side. I remember bursting into tears in the middle of the hospital cafeteria. Neither of us had ever felt this unbearable pain and suffering before. We felt totally helpless.

Our poor little girl was critically ill and there was nothing we could do to help. All we could do was sit at her incubator side day and night, willing her to get better.

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The next few days were critical for Millie and she was struggling on the ventilator. Running out of medical options to keep her alive, Millie was moved onto an oscillator. Following this, we had a very difficult discussion with the doctor. There wasn't much more they could do for her, and we were asked to give consent for her to be transferred her to a higher intensity hospital. This was the hardest decision we have ever had to make. It would be extremely risky to move her in such a critical condition, but there was no guarantee she would start to get better where she was... and if she were to get worse, well that wasn't worth thinking about.

We had to get her transferred. It was honestly the hardest thing we have ever had to do in our lives. She had been sedated for a few days to help preserve her energy. As we watched the transportation team move her lifeless, limp body into the travel incubator I tried to remain positive.

Following her transfer, Millie continued to have ups and downs but slowly and surely got to a stage where she could come home – astonishingly, on my thirtieth birthday. What a birthday present!

Millie is now in a high level of home oxygen support, so we still have this to contend with. Since coming home, we have also found out that Millie is profoundly deaf. While we embark on the second part of her journey, we have created a blog telling Millie’s story. It has been a difficult story to write, but if we can help other families through their time on NICU, it is worth remembering these difficult times, and the extra tears which come with it.

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