Tag Archives: Down Syndrome

Home for Christmas

Evie was born early, 7 weeks to be exact. She was born with sepsis, it very nearly took her from us. Suddenly the new diagnoses of Down Syndrome didn’t matter, it didn’t scare me, I just wanted my baby to live.
Walking into NICU to meet my little girl two days after Evie was born, I felt like the earth was moving under me and that  time had suddenly slowed down; just beeps and my own heartbeat was all my ears were absorbing. I knew the nurse was speaking to me because I could see her, I just couldn’t work out what she was saying. We had already been taken into a room and told how sick she was; told that she was very critical and that we needed to prepare ourselves – what does that even mean? Time slowed after that!
Evie 1
There she was, the biggest girl in the room, all 5lb9oz of her (mainly fluid as she was really oedematous). I thought that meant she was the healthiest, I was wrong. In fact she was the poorliest child in the room, but something happened when I saw her, I refused to believe she wouldn’t get better, I had to be strong, so I was.
Evie had recieved a diagnoses of Down Syndrome, something that had the potential to send fear and uncertainty down the spine of even the strongest of person, not me. I just wanted her alive and healthy, she would have a great life, I would make sure of it. I believed that me, my husband and our children were the perfect candidates to ensure her future happiness and for us Down Syndrome would never define her, it would just be a part of her.
Beep beep beep… 13 months down the line I still hear those noises. The sound of reassurance mixed with the sound of fear.
NICU is an amazing place filled with amazing people. It’s tiring and draining and the amount of learning achieved is phenomenal; about the machines, about conditions, your baby, the staff…everyday was like attending a conference, medical ward rounds every morning where we felt valued, where we were asked for input and made to feel involved in a process that was so scary, when it could have been so easy to feel out of control.
On day 4, Evie came off her ventilator, she was breathing on her own. On day 6 there was a marked difference in her CRP levels (infection markers), they were coming down. The antibiotics were working, she was getting better. It was hard work and continuous care where I never left my daughters side. She went on to have a further diagnoses of a heart condition that would require surgery, but Evie came home after six weeks in hospital. She was on a home feeding tube and oxygen, but she came home, the day before Christmas eve, and she went from strength to strength.
Evie had open heart surgery at 4 and a half months old, another scary time but it worked and her heart was fixed. She came off the oxygen and came off the feeding tube and continued to grow stronger. We are doing our best to give her the amazing life we promised and the amazing life our amazing girl deserves.
Nothing could have prepared me for being a NICU mum; the noises, the emotions and the feelings will stay in my memory for ever.
I would like to thank the staff who helped keep Evie alive, the most awe inspiring and wonderful people I have ever had the pleasure of meeting. You gave us hope, you gave us inspiration and most importantly you gave us Evie.
xx Beating heartxx
Evie   Evie