At 16 weeks I was told to go to the MAU as I was leaking fluid. I didn't think much of it after having a 24wker 7 years prior. I thought nothing could get worse. After seeing a nurse and Dr they examined me, and their faces told me in that split second what was happening. The consultant told me I had bulging membranes...I was losing my twin boys. A surgeon told me he would take me to theatre to try a stitch, but there was a extreme high risk of nipping the membrane and I would lose my boys in theatre, so my option was to try because if I didn’t I was going to lose them. Whilst in theatre all I could do was hope. It felt like I was holding my breath for the longest time. My cervix was so short he wasn’t sure if I would make it to 22 weeks.
At 20 weeks I went into labour which was stopped, then again at 23 weeks. I was told no NICU beds were available in London the closest was Brighton, but the labour was stopped. At 29 weeks at 6 days, whilst at home with my little girl who was eating her breakfast, her dad had just got into the building site he was working on in London, my waters broke. My dad took me to the hospital where it was confirmed I was in labour, my little boys were making an appearance. In the early hours on the 25th August I was taken to the labour room, my partner was called, the NICU team came up to meet me. This was it, I knew what was going to happen because of having my daughter at 24wks I was calm scared obviously. My cervical stitch was cut but only half of my cervix was dilating in that moment the boys decided they weren't playing ball anymore one went bradycardic the tachycardic. I was rushed to theatre within 5 minutes. I hadn't ever seen so many people in a room. I just remember thinking "oh no this my biggest fear ". Within 10 minutes Buddy-Lee was born at 1.06pm and Arnie was born 1.07pm on the 25th august 2016 weight 2lb each. I didn’t get to see them I just heard a cry they were taken to NICU once Buddy-Lee was stabilised.
Once they left, I took a turn for the worst. I lost consciousness and don't remember anything other than waking up in a room surrounded by loads of drs and nurses on oxygen tube everywhere my body was in shock. I got to meet the boys the following day. Buddy-Lee was on the vent and Arnie on CPAP but both doing well. Arnie was on and off CPAP and vapotherm then oxygen. Buddy-Lee was off his ventilation and was doing amazing. Both boys went to SCBU at 18 days old they looked incredible. Arnie was still on oxygen, but Buddy-Lee was bossing feeding the lot the team said if he was 4lb and a few weeks older he would be at home, but something felt wrong. On a ward round I said to the consultant (the same one that diagnosed my daughter with meningitis while in NICU ) something doesn’t feel right...low and behold a mothers instinct isn’t wrong. That night I got a phone call at 2am to get to the hospital. Buddy-Lee was being transferred to the Royal London...my heart sunk. We got there and all I could see was the x-ray of my boys belly. He was so sick the transfer team ( ANTs) were trying to stabilise him...at 9am after 4 hours of trying to get him just right for transfer I had to kiss Arnie goodbye. Luckily my mum was with him in hospital. My partner followed the ambulance, but he was on blue lights racing down the A13 all I could think was don't die.
Once at the Royal London there was the biggest team of medical professionals I had ever seen waiting for my boy. The consultant cuddled me as I stood not knowing what was wrong. He confirmed my son has a life threatening, very fatal disease called Necrotizing enterocolitis. His bowel had perforated, and he needed life-saving surgery, but he was too unstable. We were put in the sick children’s trust, which helped us rest, but at 5am the next morning we were back sitting by Buddy-Lee's incubator as the nurse was preparing him for surgery. The surgeon and the consultant sat us down and told us very straight our little boy had a 2% chance of survival whilst in surgery. If there’s nothing he can do, he will sow him up and bring him back up to pass away, if there is he will do everything. We walked down to theatre the whole team, the surgical team, 3 NICU nurses, me and his dad. We had to say our goodbyes at the theatre doors, my heart was hurting I couldn't stop crying. Whilst Buddy-Lee was in surgery Arnie's consultant rung from Basildon, they had to put him on antibiotics as a preventive for NEC. I was torn, I was a mess...4 hours later our little boy came up and the surgeon sat explained everything, said Buddy-Lee's bowel was so bad every time he touched it, it crumbled, but he was left with 10cm of small bowel and a stoma. He wasn't out of the neck of the woods he was also battling sepsis and Necrotizing enterocolitis. When I asked when are we transferring back to our local he said your not, you’re going to be here for a year...I laughed in shock. We were told we couldn't leave Buddy-Lee for 2 weeks as he was too critical his chance of survival was 1%...
After 2 weeks I went to see Arnie. He was doing amazing, full feeds, oxygen breaks and he was bigger (thank god for my mum ). 2 weeks after Arnie came home weighing 4lb, Buddy-Lee was stable. He was on and off the vent for 6 weeks. 8 weeks after surgery he had his stoma reversed. It went amazing until 4 days after he got taken down for another life saving surgery, his stitches holding his bowel together had leaked in 4 places...after another 3 hour surgery he was back up fighting sepsis again. He couldn't come off the vent for 4 weeks, when they tried, he stopped breathing, it was a long road...in January Buddy-Lee had that stoma reversed after surgery he went to PICU as he wasn’t a neonate anymore. He looked amazing, his surgeon said how well it went, he was pleased after every surgery. I always asked is he going to be okay, he always said I'm in no doubt. Later that night we kissed him good night, went over to the sick children’s trust to eat and recap on how well Buddy-Lee looked. The next morning, we see him and he looked huge, pale and not good at all. The consultant explained Buddy-Lee was in multi organ failure, his lungs were bleeding, his kidneys were failing, we were told he had 2 hours to try and pull something amazing out of the bag. His NICU nurses came to say goodbye. His surgeon I asked once again, he is going to be okay, isn’t he? He sat us down and told us Buddy-Lee's had a stroke I don’t no if he will pull through this! My partners mum who lives in Australia jumped on a plane that night, my mum and brother in law came up the hospital. We were told our little boy was the sickest child on PICU that at moment. 40 minutes later Buddy-Lee was placed on a oscillator machine that is ventilation by shakes the lungs keeping them moving...it sounded like a hammer drill. I couldn't help my little boy, he had 17 medications a Hickman line ( for his TPN ) a central line in his groin and head. Cannulas in his hands and feet, my boy was fighting for his life harder than ever. 2 hours later his blood gases weren't as bad. He just needed time to recover from shock sepsis. 6 days later they tried to take him off the vent, but Buddy-Lee wasn't playing ball. He didn’t cope so ENT came observed the next attempt if it didn’t work a tracky would have been placed but Buddy-Lee played ball.
I finally got to hold my little boy, but something was wrong he was different, he was addicted to fentanyl. He was placed on a high dose of morphine and moved to his gastro ward where it became home for 11 months. Buddy-Lee came home on home TPN till he was 3, however Buddy-Lee is total peg dependent. He doesn’t eat or drink, everything goes through his feeding pump. Buddy-Lee has Short bowel syndrome (10cm out of 21feet remaining) with associated liver disease, gallstones, autism, global development delay, cerebral palsy, sensory processing disorder, OCD, PTSD, laxity of the joints and colus of the ankles and knees. Arnie has scarred lungs due to having croup so many times with severe chest infections, an unsafe swallow...he has high functioning autism and a chronic bowel condition.Cassie