Wednesday, March 18, 2009

Change of plans again.

Nicholas is back up to 3 bottles and he took one for me in 17 minutes this afternoon. He will get the other 2 tonight. They have decided to go ahead with the hernia repair. We are waiting on the surgeon's office to schedule it and it will be sometime next week.

I thought I would try to explain the bottle feeding and G-tube a little better. Nicholas is fed 8 times a day, every 3 hours. He is on this schedule because this is the schedule they want us to use when we get home so he gets all the nutrition he needs. He is allowed to try the bottle 3 times a day right now. His 5 other feeds are fed to him through his NG tube which is in his nose. If he doesn't finish a bottle the remainder of his food is put in through the NG tube. He needs to completely finish his 3 bottles before they bump him up to 4. Then he has to completely finish all 4 to move up to 5 and so on. He is fed this often because he needs a certain amount of calories to thrive and grow. He also needs the amount of fluid they are giving him, 70ml, to keep him hydrated. He is also supposed to finish his bottles in 25 minutes. Preemies burn a lot of calories eating so if they take longer to eat they will burn more calories then they are consuming. It is extra hard work for him to take the bottle because his lungs are so damaged and it is hard to breathe.

The Dr. is recommending, but waiting for now, the G-tube because he isn't at full feeds through the bottle and the G-tube will get him home faster. If he comes home like he is now he won't be getting enough nutrition or fluids because he won't finish his bottles. The G-tube will allow us to put whatever he doesn't eat from the bottle into his stomach so he can continue to grow. We will still work with him and the bottle feeding until he gets it and the G-tube will be removed. Preemies have a lot of problems eating and this is not uncommon. The reason they want to do a G-tube is because he will do so much better developmentally outside of the hospital. You can't grow up in a hospital and he will have Mommy and Daddy there to work with him all day. Nicholas already has so much stacked against his development. Being born so extremely premature is the first thing, then he has the Grade IV brain bleed and Hydrocephalus. He is going to have life long struggles because he was so premature. Sure he looks like a normal baby, but he isn't and might not ever catch up. There is no way to know what the future holds for him. We all would rather not do the G-tube, including his doctor, but if his bottle feeding is the only thing keeping him in the hospital, it is what is best for him. I would rather work on his brain development and deal with a G-tube than leave him in the hospital longer just so can learn to eat.

The reason they want to do the hernia repair and G-tube together is so they only have to intubate, put him back on the ventilator, once and it is less strain on his already fragile body. If we wait it out, he may still never get the hang of the bottle, due to his brain being damaged by the bleed, and have to be intubabed again and go through another surgery. Every time he is intubated there is more damage done to his lungs and vocal cords. He has already had 5 surgeries and will need a shunt replacement before his first birthday. He has been through more surgery in 4 months then most people will ever go through. Each surgery also sets him back in development. He has to start over with his bottles and his body needs time to recover.

The main goal is get him home as soon as we can. Hopefully he will get the hang of it after his hernia repair and we avoid another surgery.

1 comment:

  1. From another micropreemie mom with a son with hydrocephalus. When you get the G-tube, please push for your son to be fed on a schedule as much as possible as oppossed to continuous feeds. It will do so much in terms of his recognizing his hunger cues and "wanting" his bottle. We had a NG tube at home because of failure to thrive, and I worked hard at limiting the continuing feeds and worked hard on keeping him on a 3-4 hours schedule. Fortunately, we have been able to pull the tube and he is all oral now!