Luna’s journey was a rollercoaster from day one. At 14 weeks I found out she had a condition called Gastroschisis which is where the bowel is on the outside of the body. I was told she would be absolutely fine and only be a couple weeks in the hospital.
Throughout my pregnancy her bowel started to go back inside of her… at 35+5 weeks my waters broke and I went into labour. I was transferred to St. George’s to give birth. I had been there during my pregnancy, to their Fetal Medicine Unit for scans, which was 2 hours away from home! Within second of my Luna being born she was rushed off to the neonatal unit and taken care of. I was allowed to go and see her at any point as soon as I was ready. I was a single mum and my sister went to see how my daughter was doing whilst I rested. As soon as I was ready to go up I went to see her I had my first cuddle! The best cuddle ever! She was gorgeous, I was so scared to hurt her as she was so tiny and had so many wires and tubes attached to her. The staff soon told me that she had to be taken to theatre to look at her stomach so I had to give her back and they took her down.
After it was bad news – they didn’t realise how complicated her case was and we were told that we would be there for 5-6 months providing no complications. I was so scared, everything had changed, I was so emotional and I cried a lot! The next day I had to go home as I was discharged from the hospital… 2 hours away from my newborn baby girl… I was heartbroken… The day after I went back up and the staff were so supportive and they managed to put me in a hotel room on the hospital site so I could be close by to my baby. The neonatal staff referred me to the Ronald McDonald charity house, and their staff came and found me on the unit and told me they had a more permanent room in the house near the hospital car park. I was so happy I could be so close by to Luna!
Every day was tough, Luna had so many cannulas, blood transfusions, infections, a stoma, 2 surgeries and a whole load of other stuff. It was so scary to be there alone at first but you start to recognise what wires are doing what for your baby, and become familiar to the big doctor and the words the doctors use and it becomes a not so scary place. The nurses are absolutely fantastic! They cared for Luna, I’d come in the morning and she’d look soooo cosy in her cot, always cleaned and changed if I wasn’t there to do so. They were great to talk to during the day as I had no one but Luna with me and you get to know the nurses and become friends with them. If you ever don’t understand I never felt afraid to ask what something meant and they would always tell me!
Some days were longer than others and First Touch had provided a family room, somewhere to cook or just chill when things were getting too much. Eventually it become a gossip room after I made friends with some of the longer term parents, it was nice not to feel alone and was nice to have someone to talk to and understand what I was going through. We all had our good days and our bad.
First Touch gave us presents from our children on days like Valentines, Easter, World Book Day etc. They gave us books, cards, chocolates and made the hard days better!
The pump room where all us mums would express we would call the “cow shed” as a joke. We would all sit in there expressing for our little ones, having a gossip! Most of the other mum/families I made friends with were also with me in the Ronald McDonald house!
Despite everyone’s hard work Luna become really poorly and had an infection in her line and stomach. As soon as they noticed they put her on antibiotics to help start treating the infection and on breathing support just to be cautious… she looked like a completely different baby. At this moment in time I had stopped staying in the Ronald McDonald house as it had to close, due to Covid-19. The hospital managed to get me a bed/room on the ward around the corner to Luna’s neonatal unit as I didn’t want to go home in case something happened. I’m glad I didn’t go as around 1am one of the nurses came to get me to bring to Luna. She had deteriorated a lot in just a few hours and they weren’t sure what was going to happen. They did everything they could to save her… even one of the doctors had gone home for the night and was called back to help Luna, he was stood in his pyjamas doing everything he could to save my daughter’s life, as there was no time to change. But unfortunately she didn’t make it, my Luna was now in perfect peace…. heaven had gained another angel.
The hospital, the staff, First Touch and myself were heart broken. She played such a character in all of our lives and they were incredibly supportive after. First Touch had created a memory box with Luna’s hand prints and foot prints, and a paper heart with seeds in to plant in memory of her! It was sad but truly special to know how loved she was. A candle was lit in honour of my Luna, and I am still in contact with the other mums that were there and there little heroes are doing amazing !! And at home where they should be.
I am also still in contact with some of the doctors and nurses, First Touch and Ronald McDonald House – St George’s made those 105 days with my Luna the best they could be and I am forever thankful to them.
Tamzyn Yaxley, Luna’s mum
