June 29, 2018

Big plans for Charlie on the horizon! He is currently at 1/2 Liter of oxygen and he is able to come home on that amount! He has been on it for almost a week and he’s doing great! He just has a few more obstacles to get over before he can officially “graduate” from the NICU.

Charlie’s eyes have been unchanged for weeks now; they haven’t gotten better or worse, which is great! He will have to get laser eye surgery done on them before he is discharged, though. The injections improved his ROP tremendously and the surgery will correct the rest of it. He will probably just need glasses in the future.

We have been diligent and consistent in Charlie’s bottle feeding; trying to get him to eat more and get better at it. He has made some improvements, but with his fluid goals increasing (due to his kidney stones and to keep him hydrated), he can’t seem to keep up. We have decided it would be best for him to get a gastronomy tube placed. This will help with a few things: he won’t need a feeding tube in his nose and down his throat anymore, he can still bottle feed as much as he can and we can put the rest in his tube, and it will alleviate the stress and pressure of him needing to eat to come home. Once the G tube is placed and he is doing well, he can come home! And since he sleeps all night and is hard to wake up, we can put him on a continuous feed at night so he is still getting all the food/nutrients he needs. We gave ourselves time to come to this decision and we think it’s best for Charlie. It does require surgery, so we made sure to have it scheduled at the same time as his eye surgery so he only has to be put under once.

Other than that, everything else has been going well! He is getting so big and so handsome. He is getting close to 12lbs! We thank you all so much for praying for Charlie and our family! It has been a very long road but it seems like we are so close to finally bringing our sweet boy home! Please prayer for Charlie as he will be having surgery in the next few weeks. God bless you all and have a great week!