My daughter Nellie Marjorie was born on 30th May 2014, weighing 1lb 15oz at 26 weeks gestation. Her due date was the 1st September. The time flies by and you do what you have to do, meaning you rarely have time to think, but sitting here now and writing this, there are no tears anymore just goosebumps. Don’t get me wrong, at one point the mere remembrance of our time there brought floods but time is a healer.
I had been in hospital 2 weeks previously with heavy bleeding and as I had previously miscarried, I was scared. The doctor came to see me to give me the facts and figures on the survival rate of babies born at 24 weeks, which made me even more frightened. I wanted to get home as the strain of leaving my 3-year-old son was hard. I was torn between doing the best for my unborn child and caring for my boy. He would visit and cry because he wanted to stay with mummy, so we tried to keep the visits to a minimum.
2 weeks later, after another ambulance ride with severe pain, it was decided to get my baby out. This was because my waters had gone and I had multiple infections, one being Sepsis. After they took her out there was relief that the pain had gone but then it dawned on me what exactly was happening and all those words from the previous Neonatal Doctor came flooding back. My partner had seen our daughter wrapped in cling film before she was whisked away and I cannot remember the following few hours. It was strange how strong the guilt felt. It was my fault she was fighting for her life so tiny and so delicate. If I hadn’t lost my waters and if I hadn’t got infected she would have been OK! You know that this is completely irrational but your heart is breaking. The emotions you feel throughout your time in NICU is truly a rollercoaster. One step forward and it’s elevation, then the set backs are devastating. One ounce gained is amazing, one brady is crippling. No one who has never gone through this experience could ever know what you are going through.
I had to see my daughter, so, with a lot of padding and a wheelchair, I was taken down to the Neonatal Intensive Care Unit. I was doing quite well and holding it together until the door of the small High Dependency room was opened and that was it, the tears came. All I could see was machines and tubes and a tiny little thing in the incubator. The only thing I can remember thinking is how I could have let this happen. The tears came every time I walked in that room for the next few days. We could only put our hands on our daughter and it was some time before I could actually hold her. Those sounds were to become a way of life and god forbid when they stopped.
Everyone kept saying that sometimes it’s one step forward and two steps back but Nellie started doing amazingly well. First 1ml of breast milk then 2mls, it was amazing. I couldn’t let myself think about the steps back only the progress! I was there from dropping my son off at school to going home and making dinner, telephone calls had to suffice for the rest of the time and the disappointment if I couldn’t make an evening visit. I had another child I had to switch off and become Sam’s mummy and go to the bathroom for a quick cry.
We got transferred to a new hospital, and were making new friends and getting to know another lot of nurses and doctors, and the steps kept going forward. Nellie moved from an incubator to a cot and even though that was a good step, I felt like that incubator was my baby’s protection. It is weird just how small things can seem so major. Her feeding tube was taken out.
I saw people come and go and made new friends every time, constantly thinking about when am I going to get my little girl home. But then she finally came home on 19th August 2014 weighing 4lb. She was on oxygen until about Christmas with the nurse visiting every week. I tried to take each day at a time. She slept and ate and grew stronger every day. She amazed me and still does. She is now still feisty and as determined as she ever was and is going to school in September. We still have regular check-ups and she still picks up every germ going but she really is my wonder woman!
I have been through some rough times but this particular journey has been the biggest rollercoaster of my life. You feel emotions you never thought you could, become moody and irritable and tests every relationship you have. I have met some wonderful people and my faith in human nature has been restored. I hope that sharing my story and telling you that someone does understand what you are going through helps in some way. Spoons is an amazing charity run by people who have been in your shoes.
If you’re reading this then you know about Spoons charity and probably have a child in NICU or have been in NICU so let me introduce myself...