Our journey with tube feeding began like most, with our son, Albie, relying on tube feeds having graduated from IV nutrition as a newborn in ICU.
Despite being on a ventilator for over three weeks, we slowly began having success with breast feeding and eventually the NG tube disappeared. Our breast feeding journey was short lived, however, with a second round of heart surgery at 4 months of age paralysing Albie’s vocal cords.
Food allergies meant that breast milk was the only option available for the first 15 months and so I would express and then feed Albie with slow flow bottles or with a syringe on his bad days. He was hospitalised regularly for varied reasons, but a decline in intake was always the first sign that something was wrong. Nasogastric tubes were a regular occurrence, but we continued to bottle feed when he had the strength. Solids were always a challenge for Albie with him struggling to coordinate his chewing and swallowing. As is often the case with Albie, the reason was not clearly evident and it took some time before his medical team understood the severity of his eating difficulties.
Thankfully, throughout these challenging times we have had the support of the Kids Plus Foundation speech therapists who have continued to guide, support and advocate on our behalf. A number of years ago, our fabulous surgeon decided that Albie required a fundoplication to assist in managing his reflux and inserted a percutaneous endoscopic gastrostomy (PEG) at the same time. It has been a game changer for us, allowing us to ensure that he is hydrated and has the required nutrients regardless of how bad his oromotor and oesophageal motility dysfunction is.
We still play with food and ensure that Albie is involved in mealtimes; some days he eats a modified diet with success and other days he has little interest or any oral intake causes extreme pain. Having the PEG has taken the stress out of meal times for Albie and our family. I no longer have to stress if he is having enough or forcing him to eat despite the discomfort, because we have the luxury of topping him up through the PEG. Creating a PEG for the first time is an invasive procedure, and is not without its complications, but for us it is a necessity to ensure that Albie is able to receive the fluid and nutrients required.
While Albie’s journey with food is much different to his siblings, I love the saying ‘fed is best’ and tube feeding allows us to ensure Albie is happy and has a healthy relationship with food.