As I've mentioned, we gave Elodie a middle name that we associate with stars. The night after her diagnosis, she had several major downturns, losing oxygen rapidly, turning blue until we tickled her feet or rubbed her tummy when she'd come back to us. She was very weak and we were ready to say goodbye. We were put in in a special family area in the hospital where families go for end of life, in the hopes that the child can have a slightly less medical environment when it's time to say goodbye, set up like a sort of flat.
It was nice to be away from all the machines and harsh lighting, although we were unimaginably sad, we appreciated being able to all get into a big bed together and I just put her on my chest and held her. We had a SCBU nurse assigned to us at all times, and that night we made a strong bond with our amazing nurse who stayed in the room with us. She had overhead us saying how we wished we had been able to take her outside and breathe the fresh air, or to see the stars just once, and at about 1.30am she said 'right, up we get, let's take her out'!
We were very surprised and couldn't believe it, and felt very nervous, but she bundled Elodie up in blankets, and I carried her with my husband next to me carrying her still-attached oxygen tank, and we crept down the dark hospital corridors.
Stepping out of the sliding doors into the icy January air with our baby in our arms felt like such a momentous occasion, one that we had thought would never happen a few hours earlier. There were bright stars that night and the tiny bit of her face we could see had her eyes just a little open in surprise. We can never thank that nurse, now our friend, enough for this and she even took a few wobbly photos for us! My husband chose a star in the sky that he would associate with her as we all smiled and shivered together.
We were probably only out there for about five minutes, but it felt like one of the most precious times of our life and one of the first things we ticked off Elodie's 'bucket list'.
Recently I looked up her middle name on a 'proper' baby name website, and as well as its association with stars, it turns out it means 'heavenly' or 'from heaven'. Even more perfect.
P.S We took her home the next day, and there we stayed.