Food is getting through the nissen now, but he isn't wanting to eat by mouth as much. He will eat chips though! Doesnt drink much. Few sips water a day, now wanting it with a real straw with a cup. He wants noodles one day, has a few bites then is done for the week. He begs for rice, so I cook it right then and there, and he screams NO at it. I could go on. Can we say picky oral aversion child?
Then the other day he retched so bad after a tube feed that he actually threw up a little. What in the world? We went from a too tight nissen to this again?
He is retching as I type when I just gave him 120 mls. His normal feed is 150 and he has even been taking more than that at times. Today he started the gagging again. I am done trying to figure things out. I hate HATE to watch him get sick, but I dont know what to do. HE HAS to be fed, but gets sick. Guess we just go back to the pump/slow feeds and he is on that for hours during the day again.
I am not even talking about it with people. It has been 2 yrs of the ups and downs with the feedings. So, here is where I will vent. People are bored to death listening to it and really, Im sure they just dont understand it. THen you have people that think you just need to let him get hungry and they just dont understand this HUGE problem. And they never will...
I dont think there is a specific problem causing the retching anymore. I am finally going to start believing Dr K and accept that this is just the way it is. Im seriously ok with it, but at the same time Im starting to cry. Make sense? Guess that means I think this is his life for now and however long it continues and I hate it for him. As soon as I wean him to faster feeds he does great for a while then he cant handle it again. Or food gets stuck in his esophagus. Or something else. VICIOUS cycle.
So, for myself tonight, I am listing some positives:
He will try/lick some foods now.
He doesn't dry heave when he sees food.
He lets me brush his teeth.
He is talking like crazy.
He runs, swinging those darlin lil arms back and forth.
I can wipe his mouth/nose/face w/o him gasping for air because he is so scared.
He held a popsicle at church tonight, licked it some and let it melt all over himself.
His sticks his tongue way far out like a lizard now.
a yr ago these things seemed so far away. All the norms for other babies have been huge accomplishments for him, and he is doing them. One day I will look back and think how far he has come again. Just seems like such a long road while you are living it.
Thanku, Jesus that Camden is doing amazing.
Then the other day he retched so bad after a tube feed that he actually threw up a little. What in the world? We went from a too tight nissen to this again?
He is retching as I type when I just gave him 120 mls. His normal feed is 150 and he has even been taking more than that at times. Today he started the gagging again. I am done trying to figure things out. I hate HATE to watch him get sick, but I dont know what to do. HE HAS to be fed, but gets sick. Guess we just go back to the pump/slow feeds and he is on that for hours during the day again.
I am not even talking about it with people. It has been 2 yrs of the ups and downs with the feedings. So, here is where I will vent. People are bored to death listening to it and really, Im sure they just dont understand it. THen you have people that think you just need to let him get hungry and they just dont understand this HUGE problem. And they never will...
I dont think there is a specific problem causing the retching anymore. I am finally going to start believing Dr K and accept that this is just the way it is. Im seriously ok with it, but at the same time Im starting to cry. Make sense? Guess that means I think this is his life for now and however long it continues and I hate it for him. As soon as I wean him to faster feeds he does great for a while then he cant handle it again. Or food gets stuck in his esophagus. Or something else. VICIOUS cycle.
So, for myself tonight, I am listing some positives:
He will try/lick some foods now.
He doesn't dry heave when he sees food.
He lets me brush his teeth.
He is talking like crazy.
He runs, swinging those darlin lil arms back and forth.
I can wipe his mouth/nose/face w/o him gasping for air because he is so scared.
He held a popsicle at church tonight, licked it some and let it melt all over himself.
His sticks his tongue way far out like a lizard now.
a yr ago these things seemed so far away. All the norms for other babies have been huge accomplishments for him, and he is doing them. One day I will look back and think how far he has come again. Just seems like such a long road while you are living it.
Thanku, Jesus that Camden is doing amazing.
HI Amazing, awesome, wonderful, and special Camden!
ReplyDeleteMy name is Jenna and I came across your blog. You are a courageous, strong, and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. U are a real Super Trooper!
I was born with a rare life threatening disease.
www.miraclechamp.webs.com
My son was born last August and has all sorts of issues: a genetic abnormality, a developmental delay, ENT issues, etc. Most recently he has been diagnosed with infantile spasms, so he has seizures. These will go away, but there is a good possibility he will have another type of seizure disorder in the future. I have a blog for the same reason: to vent and not have to talk about everything over and over again. It's nice to know there are people out there like you, who are dealing with the same type of things. Keep strong and keep posting!
ReplyDeletehttp://cradysboy.blogspot.com/