When Asher had his first surgery at 3 days old, and then another at 3 weeks old, the breathing tube damaged his small and fragile vocal cords, actually causing some paresis on one side. We were told that it may or may not heal in his lifetime. We knew it would be difficult but a small price to pay to have him still with us. Because of this, he was at risk to aspirate on thin liquids. He initially came home from the hospital with the feeding tube in his nose. At 7 months old we had a more permanent gastrostomy tube placed in his stomach. He received 100% of his nutrition and medicine through his tube. He did not have much skill at drinking thickened liquids by mouth.
After several months, we started giving him little snacks orally, We also switched to a bolus feeding schedule during the day instead of the continuous feeds. That meant he would get his 3-4 oz of formula in a couple minutes instead of spread out over several hours. The boluses let his stomach start to feel hunger. He eventually gained an appetite and increased the food he ate by mouth.
We did a swallow study at one year old to see if his vocal cords were healing. To our surprise, they were healed and he passed the study! We could now give him anything by mouth. As his appetite grew, we weaned down on the amount of formula he received through his tube until he was only using it at night. That eventually dropped off as well after 4 months. He was then getting all his nutrition orally after having the g-tube placed 8 months earlier. This was such a huge step for him. He loved meal time and was often the last one at the table finishing off his sisters’ plates. He was able to gain weight and started progressing in physical development.
We still used the g-tube to administer his twice-daily medicine for another 6 months. At 22 months old we started giving it orally and he did great with it. We kept the g-tube in for another 3 months until he was 25 months old when he pulled it out and we couldn’t get it back in. We had the all-clear to remove it from his doctor already. We tried to let it heal naturally but he did eventually need it sewn shut about 2 weeks later. It’s been 3 months since it’s been out and it’s great to see him sliding down the stairs. wrestling, swimming, and being very active without any worry of it being pulled out.
