I initially went into hospital at 24 weeks with slight abdominal pain and light spotting. Because I was rhesus negative, they suggested I go into my local hospital and get checked and get an Anti-D injection. On exam, they found that I was already 3 to 4cm dilated and my waters were too low to put in a stitch...it was just a waiting game. I got my first steroid injection at St. John’s hospital before I was transferred to Simpson’s in Edinburgh where I was put on bed rest, received magnesium and the remainder of the steroid injections. My son arrived 6 days later at 25+1, weighing 940g (2lb1/5oz).
Our son was called Archie 2 days after he was born. He was born with a perforated bowel, his eyes were still fused shut and was just tiny! Archie needed surgery at 2 days old. He ended up with a stoma. We didn’t get to hold him until he was 2 weeks old as he struggled with his ventilation and was required to be on and off fully ventilated, BiPap or CPAP for 2 weeks.
He was then relatively well for some time, before being diagnosed with NEC following a few days of increasingly poor health, vomiting and desaturating. Archie then needed another stoma surgery. He lost 35cm of his intestines meaning that he could no longer be orally fed and needed TPN and lipids to get him through. This came with its own issues of tissued cannulas and medication burns.
He needed to get a central line which worked great for some time before it contracted an infection requiring another surgery for removal of central line and a new one put in. Ventilation and breathing continued to be an issue and he went between all options available, whether it was fully ventilated, BiPap, CPAP and high flow.
We spent 5 months in NICU in the same bedspace. The nurses and doctors saved my baby. We had our ups and downs, mostly through frustration of having a sick baby we just couldn’t help get better or take home.
We owe everything to Simpson’s neonatal team.
From Simpson’s, Archie moved Sick Kids Edinburgh where he underwent another 2 surgeries. 6 surgeries in total of 6 months. He got home the weeks before Christmas 2016 after a total of 7 and 1/2 months in hospital. He came home with a peg feed and BiPap no oxygen. Archie is now a happy, healthy 3-year-old.
The nurses in Simpson’s saw our family through the darkest days and celebrated every small achievement with us and we met some lifelong friends while we were there.