In December 2016 our youngest son Arlo arrived 15 weeks prematurely. The size of my hand, at his teeniest he weighed just 535g/1.1lb. Born in his waters, he was immediately placed in a plastic sandwich bag, then resuscitated, ventilated and whisked off to NICU by 8 minutes old.
He spent his first 208 days in hospital and had 4 lifesaving surgeries, the first whilst weighing just 2lb. During his first 6 weeks he was diagnosed with a heart murmur (PDA), that quickly led to heart failure, and he battled through acute renal failure, pulmonary haemorrhage, pneumothorax and sepsis multiple times.
Just when we thought we were through the worst, at 7 weeks old, he developed Necrotising Enterocolitis. The infection took hold quickly, much faster than even the Drs anticipated and within of a few hours of him first showing symptoms we were told to take some photos and say goodbye as he was put back on life support, critically unwell.
The infection had caused his bowel to perforate as the tissue died, which very quickly led to septic shock. His only chance of survival was surgery to remove the dead areas of his small bowel and form a stoma so that his remaining bowel could have a chance to recover. In his critical condition, and weighing only 2lb, we were warned that there was a high probability that he wouldn't survive surgery. We were also warned that there may not be enough healthy bowel left for him to survive, and if this was the case, they would bring him back to us and begin the process of withdrawing treatment.
The wait during his surgery was unbearable, I remember desperately wanting the phone to ring with news but also being utterly terrified at what that news would be. Miraculously he made it through and for the first time in weeks we dared to hope.
Unfortunately, the infection continued to spread after his first surgery and Arlo remained critically ill and on life support. We'd pinned everything on him making it through the surgery, and had convinced ourselves that if he did that then everything would be okay, but it wasn't. He just didn't make any improvement at all, and every day was like existing in some torturous Groundhog Day, slowly watching him fade away and losing any hope we'd had left.
After 17 days of this the surgeons decided to carry out a second surgery, where it was discovered that a well as further damage from the infection, Arlo's bowel had become frozen with adhesion's and narrowing’s. Thankfully this time it was a success. However the surgeon came to sit with us the next morning and told us in no uncertain terms that Arlo's bowel was a mess, he'd spent hours literally picking it apart and had to leave several areas of damaged bowel that he would usually have removed because he believes had he removed them then Arlo would have bled to death. He made it clear that any recovery would take a long time and that Arlo would certainly be affected by this for the rest of his life.
True to the surgeon’s word Arlo's recovery was long and painfully stop/start. Finding a feed he could tolerate took a long time and eventually his stoma loses were out of control and he became dependent on TPN. His surgeon had wanted to wait until after his first birthday to attempt reversal of his stoma however his dependence on TPN had led to liver disease at this point so the stoma ended up being reversed early at 6 months old. It was expected that Arlo would continue to require some amount of intravenous nutrition or to be pump fed overnight so that the milk was trickled in. Arlo had other ideas and surprised everyone by tolerating full concentrated hydrolysed milk feeds.
As he gradually got bigger he continued to face hurdles; chronic lung disease, retinopathy of prematurity, mrsa septicemia and e.coli septicemia. We almost lost him on countless occasions but he fought everything that was thrown at him and finally came home with home oxygen on day 208 (aged 7 months).
Despite his chronic lung disease, he ditched the home oxygen at 19 months old. Now 3 years old, his bowel will never work quite as well as it could and he still suffers from malabsorption, chronic diarrhoea and frequent pain. He's developmentally delayed, hearing impaired and a frequent visitor to the children's ward during the cold months because of his lungs, however he takes absolutely everything in his stride and is just a beautiful ray of sunshine. Everyone who meets him falls in love with him and though day to life can be tough, we count our blessings every single day that's he's here.
x Laura x