The KiraVerse – Kira's thoughts/explains NG/NJ feeding tubes, our experience with failure to thrive

Hugo’s Story 💙 As many of you know, Hugo and Eren were born prematurely, and they have been in and out of hospital since they were born, so life has been very busy for our family! Hugo has spent around 10 weeks in hospital this year! He has struggled with lots of vomiting and gaining weight, and he was diagnosed with failure to thrive, which is a medical way of saying that he wasn't growing and gaining weight as expected. Hugo was born at around the 9th centile and went straight to NICU for two weeks. While he was there, he needed help with his breathing and keeping his temperature up, and he also needed antibiotics because doctors were treating him for suspected sepsis, which is when the body has a serious reaction to an infection. When Hugo finally came home, he spent a lot of his time sleeping and being sick. He wasn't gaining enough weight and eventually dropped to well below the 0.4th centile. We tried lots of different types of milk and feeding methods, but he ended up back in hospital another three times. During his most recent hospital stay, doctors discovered that Hugo has an unsafe swallow, also called paediatric dysphagia. But what does an unsafe swallow mean? Normally, when we swallow food or milk, it travels down the right tube into our stomach. With an unsafe swallow, the muscles involved in swallowing don't always work together properly. This means that milk or food can sometimes go towards the lungs instead of the stomach. This is called aspiration and can make someone very poorly. Because drinking milk by mouth wasn't completely safe for Hugo, the doctors needed to find another way to give him the food he needs. Hugo first had an NG tube. This is a very small, soft tube that goes through the nose and down into the stomach. Milk can then travel through the tube directly into the stomach without Hugo having to swallow it. Unfortunately, the NG tube wasn't quite enough for Hugo, so he was given an NJ tube instead. An NJ tube is similar to an NG tube, but it goes a little further. Instead of stopping in the stomach, it goes through the stomach into the small intestine. This means Hugo can have his milk delivered directly into his tummy without needing to swallow it. Hugo now has his milk going through his NJ tube for around 18 hours every day. He also has lots of medication and help from different healthcare professionals, including physiotherapy, to help him grow stronger. It has been a really difficult year for our little boy, but despite everything he has been through, Hugo is the happiest little boy! 💙 He has worked incredibly hard and has now put on a huge amount of weight. Both Hugo and Eren are still well below the 0.4th centile, but Hugo is growing, gaining weight and making amazing progress. We are so incredibly proud of him! 💙