Posted: July 9, 2018

Evie Rose Nealings’ Story

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Evie Rose was born by emergency C-section on 10 November 2010. On her 20 week scan a cyst like structure showed up and it was thought it could have been an ovarian cyst, it was monitored closely but it stayed the same until a 37 week scan when Evie was poorly. We knew there was an a risk of Rhesus disease due to my blood type so we always knew there may be problems, however we always thought Evie would just need a blood transfusion. We never anticipated what lay ahead for us.
When Evie was born at 2.32pm it was the longest few minutes while they resuscitated her. After a quick look at her she was rushed to Ward 35 where a truly dedicated team began to try and save our beautiful baby. She had a head of jet black hair which was a total shock as her sister had no hair when she was born. She was ventilated on CPAP and her breathing difficulties were at first just thought to be related to her hemolytic disease of the newborn.

That night she was given a blood exchange and we first got to see her around 11pm. Her abdomen was distended and all of the doctors were trying to work out why. The following day Evie was put on full ventilation as she was not coping well on CPAP and she had not passed any urine or meconium. The team of doctors and nurses were trying everything they could to try and work out what was wrong with Evie. It was around 5pm just as were going to bring our 3-year-old daughter to see her new little sister when Dr Harigopal came to see us. He explained that Evie was very sick and that she had taken a turn for the worst when they moved her into a bay from the back shop. He explained they were supporting her every way they could with her breathing and had paralyzed her to support a different type of ventilation. It was then that the reality hit that we might lose our beautiful baby girl.

Later that night we met with the surgeons who explained that if Evie deteriorated even further then she may be too sick to operate on so it was decided to try and operate to find out what was causing Evie so many problems. Evie was baptised and we all prayed she would make it through the operation. Late in the evening on that Thursday, when Evie was just over 24 hours old, she was being prepared for theatre when a decision was made not to operate as the anesthetist did not think she would make it to the new operating theatres.

After various scans it was decided to try and put a drain into her stomach to see if any fluid could be drained away  to help her breath. Mrs Lawson carried out the procedure on ward 35 and after the worst night of our life Evie’s breathing improved, 330mls of fluid was drained from her tummy. This helped Evie and bought her some time. Although she improved we knew she was not out of the woods and everyday was the same. In the waiting room with other anxious parents, the smell of the washing as you enter the ward and the dread of the news every ward round would bring.

Over the next few days Evie remained quite stable but still very poorly. Gradually her tummy began to become severely distended and after various specialist doctors and surgeons visited her it was decided they would operate on day 6. After hours of preparation Evie was taken to the new children’s hospital. I will never forget that walk following the transporter carrying her and I can still see the looks on some of the faces of people as they stopped to look at her. Those next few hours were awful and the operation took much longer than expected as they struggled to get lines into her veins.

After the operation Mrs Lawson came straight to see us and brought us good news! Evie had had a meconium pseudo cyst which along with her hemolytic disease of the newborn and abnormal liver function tests had caused all of her problems. She had a stoma fitted but we were just so relieved that she had survived the surgery. Evie remained in Red on Ward 35 and all of the doctors and nurses were amazing. I still remember Norma giving Evie her first hair style and Mel who was with us when she was baptised, Jacqui getting her the pram when she was struggling coming off the morphine and Sue organising her cot keeping it all neat and tidy.

Evie remained fully ventilated for three more days after her surgery and then for the first time we saw her face. She had been so swollen with oedema she had dints where the tubes had been in. She began to pass urine and she was shrinking day by day. I remember the joy when I arrived on the Saturday morning and I went to her bay and she was not there. We had made it into blue, something we had all been wishing for! She began to feed through a tube and her daddy had his first cuddle when she was 10 days old.

After a few days in blue Evie was moved to Ward 9 to be looked after by the surgical team. The staff were amazing and they supported her feeding and showed me how to take care of her stoma.

After a very difficult start Evie came home to join her family in time for Christmas. We still have visits back to the ward for blood tests and to check her weight but it is amazing to now be a family of 4. Something we thought might not have happened.

Evie had her stoma closed in January and she has continued to grow and thrive over the last year. We celebrated her 1st birthday and we are now really looking forward to watching her grow up. All of this would not have been possible without the love, care and dedication of all the staff on Ward 35 and Mrs Lawson and her team on Ward 9. We can never thank them enough for what they have done they are a truly amazing group of people!

Thank you all, love Louise, Kevin, Emily and Evie Nealings

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