I had a terrible nights sleep as I had reacted to one of the drugs after my surgery. In the morning a nurse realised how exhausted I was and called the nursery to see how the girls were. She told me they were doing fine and gave me a sedative so I could sleep for a few hours. I resisted it but then with encouragement I realised I had a long road ahead in hospital and needed some rest.
When I woke, Saxon had been to see the girls and he was full of excitement. Both girls were doing so well they had both moved from the ventilators onto C-Pap. This was an amazing step. Lucia was still our biggest concern as her heart was under a lot of strain due to the excessive blood in her little body. It was decided during that day that she was not so serious that they needed to drain any blood from her. Instead she was put under lights due to severe jaundice. She was extraordinarily red and her skin glistened it was so dark.
When Charlize was born she was quite limp. Her head was also tilted towards her shoulder and this caused some problems when the doctors were trying to insert the ventilator. This was due to my tiny pelvis where each of the twins basically picked a side and “engaged” themselves ready to be born. By day two her head seemed to be sitting in a more normal position and she was wriggling around more. She was still quite anaemic but had been given a blood transfusion at birth and all her levels seemed good. They were happy with how both girls were progressing. We knew the first 48 hours were the worst and that these were all good signs.
I knew the most important thing I could do was keep expressing milk for my little babies which they would start receiving very soon to fatten them up.
We spent a lovely afternoon with the girls and headed back to my room for dinner and then Saxon went home to be with Orlando and Indiana. After dinner I remember talking to my best friend, Michelle, on the phone and I’m sure she will remember how excited I was to have two perfect little girls that were doing well.
About half an hour after I spoke with Michelle I was sitting on my bed watching some TV when I heard high heeled footsteps walking rapidly down the corridor. My room was at the end of the corridor and I just knew those footsteps were coming to my room.
Dr Mary knocked on the door. I knew this wasn’t good. She told me that when she was doing her rounds at 4pm the nurse told her how Charlize had suddenly become quiet and her temperature had dropped.
When you and I get an infection our temperature increases but for a premature baby it is the opposite. They started running tests as she was deteriorating rapidly. They started her on antiotics and she was re-ventilated. They had been working on her for about 3 hours and she didn’t seem to be getting better. Mary explained they had tried three different types of antibiotics and she wasn’t responding. She suggested I call Saxon and get him into the hospital asap. She gave me a hug and told me she’d see me up there.
I had the most adorable nurse that night. I can’t remember her name but I remember her face. She put me in a wheelchair and held my hand and took me up to see my baby girl.
As soon as I saw her I knew she was very sick and her body could not fight any longer. You could hardly move around her humidicrib as there was so much medical equipment around her keeping her alive. I felt crushed and shocked and I didn’t believe this was really happening. I looked at the xrays and ultrasounds with Mary very calmly and I knew what she was saying. I called Saxon and told him to drive faster.
The look on the faces of the other parents in the NICU said it all. They were cuddling their babies as close as they could and most of them had tears in their eyes. When a situation like this occurs in the NICU the social worker tells the other parents in the room so they can choose to leave should they wish. There are only 8 babies in the NICU and two of them were mine and you get to know those other parents very well so when something like this happens it’s devastating.
The Dr’s and nurses gathered around Charlize and spoke to me in hushed voices and their eyes were red from crying. I just knew this could not turn out the way I wanted.
Finally Saxon arrived. We were given big blue reclining chairs and once again Mary explained what was happening to Charlize. They could only assume it was a severe infection as they had tried absolutely everything possible and she was not responding. Her little body was tired and could not fight any longer. We decided that we would remove life support and let her body rest.
I wanted to desperately hold her. Regina was Charlize’s nurse that night. She was in the theatre when the girls were born and took delivery of Lucia. Regina was the most beautiful nurse with the most gentle nature.
She delicately removed Charlize’s ventilation tubes as her skin was very fragile and she didn’t want to hurt her. She took all the monitors off her and wrapped her in a fluffy white blanket and put a lovely pink bonnet on her head. She put her in my arms and I could no longer hold back the emotions. I sobbed and sobbed. I held her close to my heart so she could feel me. I gave her to her Daddy for a cuddle and the tears flowed freely down his face.
We had her baptised and the staff were so wonderful arranging everything for us.
I had asked my sister Kathryn to come to the hospital to meet her. I had also called my parents and asked them to come but I knew how difficult this could be for them. When I was only 18 months old my Mum gave birth to my little sister, Danielle, who was born at 26 weeks. She only lived for 9 hours.
Saxon had called his parents and asked them to come and meet their grand-daughter.
We were moved to “the quiet room”. It was a room filled with comfy chairs and too many tissue boxes.
I introduced Charlize to her aunty Kathryn and she held her and cried and talked to her. Saxon’s parents also arrived and held her. When my Mum and Dad arrived I was so relieved. I really wanted them there. I handed Charlize to her Nanny and I could see on my parents faces the love and hurt they had for Charlize and for me. Mum and I sat and cuddled her. We told her how perfect she was and she was loved deeply.
The eight of us talked to her and kept her comfortable and warm. I wanted her to know that she was absolutely surrounded by love.
At 10.55pm on Tuesday the 15th November 2011, Charlize took her last breath, after 32 hours of fighting so hard, in Mummy’s arms. She looked like a perfect little baby peacefully asleep being rocked by her Mummy.
I remember only waking up the next morning really disturbed by the dream I thought I had, but when I tried to open my eyes I realised they were swollen and Saxon was lying in the room next to me. Unfortunately it was no dream, it was our reality that we now had to work out how to live with. The heaviness in my chest. The physical pain in my heart that has never gone away. It feels like part of my body is missing and I have only just learnt how to adapt to the change.
I knew now that I must fight with all I had to make sure Lucia survived, that Lucia came home to her family. I can’t tell you the panic that set in the next day when we went to the NICU to see Lucia and she had been put on the ventilator again. We were told late in the evening she started struggling and they didn’t want to push her so they were letting her body rest. The nurses believed that she had felt the pain of losing her soul mate as they saw this particular behaviour quite often in twins, especially identical twins. They just wanted to comfort her and let her recover from the shock of losing her sister. She was put on antibiotics as a precaution as they still had no idea what had happened to Charlize.
It was extremely distressing standing at Lucia’s humidicrib and seeing Charlize’s completely empty, waiting for a new baby. From that moment on I stood with my back to bed 7.
The day after we lost Charlize the pathologist called Dr Mary and told her that Charlize had contracted Group B Strep. For those who have had babies you would know that at about 36 weeks pregnant a swab is done to test you for this. I was swabbed on three different occasions, twice before I had the girls and once after. In addition my placenta was sent to pathology and put through vigorous testing. All tests came back that I was negative to Group B Strep. The strain that Charlize had was so aggressive that it cultured in only four hours. To this day the frustration at not knowing where this germ came from makes me angry. She shouldn’t have had it, she shouldn’t have EVER got sick. We are forever thankful that Lucia did not contract this nasty infection as well or our story would be very different today.
We are very blessed that our girls were identical as we get to see how Charlize would’ve looked as Lucia grows up. Sure, they would’ve had differing personalities but I will always remember Charlize’s amazing dark eyes and the first time I held Lucia when I looked into her little face staring back at me was Charlize’s beautiful eyes.
Our beautiful little girl will live on in our hearts forever and ever and I am truly blessed to have shared 27 weeks and three days with such a strong little angel.
Today, five years on, the sadness hasn’t gotten easier, in fact I feel sometimes it’s actually harder. It means that it’s been nearly five years since I saw her, held her, smelt her, touched her, watched her breathe, watched her cry, looked into her eyes. Every day I go forward it’s one day further away from her.
Recently a beautiful friend said to me, “You are so hard on yourself, you should feel however you need to feel. Five years is not a long time. It is new and she is your daughter. It will take your whole life until you’re with her again. Take whatever time you need and never feel guilt for it.” I burst into tears and hugged her so tight and said “Thank you, that’s what I needed to hear”.
For she will always be my beautiful baby girl that I couldn’t save – but I will be forever delighted that she chose me to be her Mummy. She decided that I was the Mummy she wanted to hold her hand when she was born, to sing to her, to smile into her face, to love her eternally. She chose me to love and nurture and keep her baby sister, her soul alive. She chose me to teach Lucia about life and love and loss and I am blessed she did choose me for she has taught me what life is really about.
She has taught me to smile through tears and sadness and always find the joy even in the sadness.
She has taught me that if my eyes don’t sparkle with happiness my heart is always full of love and sparkle.
She has taught me I am forever blessed because I am her Mummy.
She has taught me that when there is rain, there is always a rainbow.
She has taught me that there is no greater love.