THREE
Sunday, March 13, 2011
He is home
Grey is home. Sleeping in his own bed. He is still a little grouchy, but played on his playmat like it was his business. Very happy about how he is doing! Thanks for all the prayers. God is good.
Friday, March 11, 2011
Grey Update
Grey did well through surgery. He is off the vent, and resting comfortably on a regular peds floor. We are very happy. It's so nice to see him without tape all over him, and resting. When he wakes, he's a bit grumpy... but so would I be. Hoping for a Monday discharge! Thanks for all the prayers. Keep them coming!
Gtube vs. NG
Well, we are currently here at the hospital waiting for Grey to get out of surgery. I have some time to sit down and blog about gtube etc.
Grey has an an NG tube since birth. Initially it is put down infants that don't eat by bottle because they are too premature. Lillian and Owen had their NG until about 2 days before they left the hospital.
At about 32-34 weeks (correct me if I'm wrong NICU nurses) infants get their drive to eat. They finally get their suck, swallow, breate coordination about about 35 weeks or so; or so that seemed how it was for them. Since Grey was sick, and on and off the vent with many surgeries, he missed his window of learning the drive to eat, and the meaning of hunger, and the NEED to take a bottle. He got his food through his IV mostly, and some through his NG tube until he had his re-enastamisis surgery in September. He missed some key eating milestones by not being allowed to eat.
Thus... here we are. Grey will eat about an ounce at a time. He then decides that he doesn't need to eat anymore. Somehow the connection between hunger, and taking a bottle isn't really there for him. We can make him hungry, by not feeding him thru his tube and see if he will eat more. He won't. It just makes him angry. Defeats the whole purpose. Until Grey can feed himself (alot of times that is when kids get the hunger is satisified by eating connection), and can live off of food and cow's milk, he will need a feeding tube. Many times kids that can feed themselves also don't feel so defensive e
ating. If you think about it, Grey has had BAD oral stimulation for a long time. Take this medicine you don't want, bad reflux, a tube shoved down his nose atleast once a week, tape on his face for 9 months, and the list goes on.
The NG goes into his nostril, through his developing sinuses, down his throat, and into his stomach. A gtube simply goes through into his belly above and to the side of his belly button, and directly into his stomach. This will allow him to have his formula through the tube, and directly into his stomach. Sometimes this helps reflux, so he doesn't have a tube all t
he way down his throat, and also can at times allow his oral stimulation to be more pleasant... hopefully making him want to eat a little more.
I will post illustrations when I can open another window on my own computer.
Let me just tell you how it is to shove a tube down your kids' nose every week. Every week, he knows when I have laid him down on the changing table, and he has his tube out for his 6 hour break on Sundays... that the tube must go in. It used to be that he could be cuddled and comforted by me after I put the tube down. But, now that he is bigger, he appears to hold a grudge against me after I replace the tube weekly. I cannot wait to NOT have to do this every week. Even though the Gtube will be a learning curve for those that help us, and Todd somewhat.... but we will be so glad to get the tape off his face, and tube out of his nose.
Today in the preop area, he was fine. He hadn't had anything to eat since midnight... and he was pretty good. They did give him a breathing treatment to help with post op recovery. He actually did quite fine with that. He was in his peach little gown, playing with his feet, sucking on his pulse ox that was on his foot... and trying to get his ID band off. UNTIL, he saw doctors, and the nurses that were coming to get him. Soon after that, he went to the OR, looking at us, like... "hmmm is there a reason I am going, and YOU are not....??"
He should be out of the OR soon. Will update when I get a chance.
Grey has an an NG tube since birth. Initially it is put down infants that don't eat by bottle because they are too premature. Lillian and Owen had their NG until about 2 days before they left the hospital.
At about 32-34 weeks (correct me if I'm wrong NICU nurses) infants get their drive to eat. They finally get their suck, swallow, breate coordination about about 35 weeks or so; or so that seemed how it was for them. Since Grey was sick, and on and off the vent with many surgeries, he missed his window of learning the drive to eat, and the meaning of hunger, and the NEED to take a bottle. He got his food through his IV mostly, and some through his NG tube until he had his re-enastamisis surgery in September. He missed some key eating milestones by not being allowed to eat.
Thus... here we are. Grey will eat about an ounce at a time. He then decides that he doesn't need to eat anymore. Somehow the connection between hunger, and taking a bottle isn't really there for him. We can make him hungry, by not feeding him thru his tube and see if he will eat more. He won't. It just makes him angry. Defeats the whole purpose. Until Grey can feed himself (alot of times that is when kids get the hunger is satisified by eating connection), and can live off of food and cow's milk, he will need a feeding tube. Many times kids that can feed themselves also don't feel so defensive e
ating. If you think about it, Grey has had BAD oral stimulation for a long time. Take this medicine you don't want, bad reflux, a tube shoved down his nose atleast once a week, tape on his face for 9 months, and the list goes on.The NG goes into his nostril, through his developing sinuses, down his throat, and into his stomach. A gtube simply goes through into his belly above and to the side of his belly button, and directly into his stomach. This will allow him to have his formula through the tube, and directly into his stomach. Sometimes this helps reflux, so he doesn't have a tube all t
he way down his throat, and also can at times allow his oral stimulation to be more pleasant... hopefully making him want to eat a little more.I will post illustrations when I can open another window on my own computer.
Let me just tell you how it is to shove a tube down your kids' nose every week. Every week, he knows when I have laid him down on the changing table, and he has his tube out for his 6 hour break on Sundays... that the tube must go in. It used to be that he could be cuddled and comforted by me after I put the tube down. But, now that he is bigger, he appears to hold a grudge against me after I replace the tube weekly. I cannot wait to NOT have to do this every week. Even though the Gtube will be a learning curve for those that help us, and Todd somewhat.... but we will be so glad to get the tape off his face, and tube out of his nose.
Today in the preop area, he was fine. He hadn't had anything to eat since midnight... and he was pretty good. They did give him a breathing treatment to help with post op recovery. He actually did quite fine with that. He was in his peach little gown, playing with his feet, sucking on his pulse ox that was on his foot... and trying to get his ID band off. UNTIL, he saw doctors, and the nurses that were coming to get him. Soon after that, he went to the OR, looking at us, like... "hmmm is there a reason I am going, and YOU are not....??"
He should be out of the OR soon. Will update when I get a chance.
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