Although I am an open book about most things, one I dont usually touch upon with many is the difficulties of oldest son's eating issues.
I dont discuss much because usually it eats away my insides.
It's a thorn in all of our sides.
Truth be told is I never thought I would be at this chapter.
That my son would be 8 and he would still have a feeding tube.
That my son would still be dependent on a tube to get most of his nutrition.
For so long I would just ignore the issue.
He was fighting to breathe and stay alive
He was working on talking better and improving his speech so feeding came secondary. He had a tube, after all, which was helping him grow so "everyone" said not to stress too much. He was 3 and not talking so that came first.
But in my heart, I knew I missed a big window.
Its like anything, if you miss opportunity knocking at your door, it isnt bound to return.
So my oldest is 8 with a feeding tube.
And I blame myself for a lot.
I blame myself for not pushing when he was younger
I blame myself for not pushing when he got older.
I blame myself that I still use his tube as a crutch when I dont have an hour to sit with him to eat (because that's how long it often takes him to eat half a sandwich)
So I dont discuess these issues much because it tears at my heart and even as I write; I cry.
I dont expect any of you to get it (unless you come from my world)
Ive heard so many opinions and advice over the years and I know everyone means well but when people ask me how his feeding is going...I want to tell you about my day to day life..
instead I just say "it's slow but he is making progress"
Which isnt a lie.
But there is so much more to that.
My son had a g-tube (gastrostomy tube; feeding tube) inserted at the age of 3 months as a "precaution" when he had his tracheostomy. He was breathing hard and needed help to breathe so feeding became put on the back burner. The tube was a blessing because I knew he needed to grow to have the trach come out but he couldnt grow if he wasnt eating and he couldnt eat because he was working so hard to breathe.
It was a viscio
So the tube became my BFF.
For a while.
Until I started hating it.
We would feed him overnight by a pump and it would slowly fill him with specialized formula.
Until he rolled over and kicked out the insert and then formula leaked all over him and the crib.
And then it was 3AM and my husband and I were changing pajamas and crib sheets cursing the damned tube.
But then oldest got admitted a few times to Children's Hospital with Pneumonia and the tube helped him get better because we didnt have to worry about antibiotics getting into him or him spitting out medicine. I used to joke that every child should have a tube just for medicinal purposes.
Oldest got his trach out at 19 months of age and we then started to work on speech because he hadnt uttered a sound- ever; until that day. He didnt know how to babble or make cooing sounds because for 19 months, the trach blocked his voice. March of 2004 was the first time I heard my son cry out loud.
19 months after he was born.
So you can see how feeding became a secondary issue for us.
We were working on other milestones like crawling and walking. Clapping and tracking objects. Making sounds. Learning to talk and verbalize.
But oldest is in Second Grade now and has caught up to his peers in most areas.
Dont think that Im not grateful for this
I marvel in his accomplishments every day.
What we all; as parents, take for granted (the normal every day things like eating) has always..ALWAYS been a struggle for my child. He has always progressed at his own pace so when eating didnt come naturally for him (or easily) I said to myself, okay, were moving slow but he will get there.
But we arent there
And although I truly do NOT believe he will have a tube forever, getting there is much harder than I thought.
I know people cant get why he just DOESNT eat.
Eating and sucking and swallowing are a natural process.
Babies do it from the moment they are born.
My oldest never did.
It was never natural for him
So he had to learn how.
He had to learn how to chew and to swallow and to sip through a straw.
And he never took to it easily.
And lets not forget the food allergies just to put the icing on the cake.
So his senses never get heightened when he smells home baked chocolate chip cookies because he really has never known what it is like to be hungry.
Because we have always tube fed him in between.
Ive tried to "let him go hungry" but it doesnt really work.
I dont want to paint you a totally bleak picture.
He eats.
Some
Just not a lot
And what he eats takes him an hour to chew and swallow
And this is not an exaggeration
And whatever he eats in that hour, is not enough to carry him over to the next day without having supplemental feeds because an 8 year old boy can not live on 400 calories a day.
There are many days that this doesnt bother me too much.
I go on with our day to day living because this is all we have ever known.
Inserting supplemental formula into my child by a tube inserted into a stomach..its all we've ever known.
Ive been running this marathon for a really long time now.
I guess I was hoping it would be a sprint
I dont discuss much because usually it eats away my insides.
It's a thorn in all of our sides.
Truth be told is I never thought I would be at this chapter.
That my son would be 8 and he would still have a feeding tube.
That my son would still be dependent on a tube to get most of his nutrition.
For so long I would just ignore the issue.
He was fighting to breathe and stay alive
He was working on talking better and improving his speech so feeding came secondary. He had a tube, after all, which was helping him grow so "everyone" said not to stress too much. He was 3 and not talking so that came first.
But in my heart, I knew I missed a big window.
Its like anything, if you miss opportunity knocking at your door, it isnt bound to return.
So my oldest is 8 with a feeding tube.
And I blame myself for a lot.
I blame myself for not pushing when he was younger
I blame myself for not pushing when he got older.
I blame myself that I still use his tube as a crutch when I dont have an hour to sit with him to eat (because that's how long it often takes him to eat half a sandwich)
So I dont discuess these issues much because it tears at my heart and even as I write; I cry.
I dont expect any of you to get it (unless you come from my world)
Ive heard so many opinions and advice over the years and I know everyone means well but when people ask me how his feeding is going...I want to tell you about my day to day life..
instead I just say "it's slow but he is making progress"
Which isnt a lie.
But there is so much more to that.
My son had a g-tube (gastrostomy tube; feeding tube) inserted at the age of 3 months as a "precaution" when he had his tracheostomy. He was breathing hard and needed help to breathe so feeding became put on the back burner. The tube was a blessing because I knew he needed to grow to have the trach come out but he couldnt grow if he wasnt eating and he couldnt eat because he was working so hard to breathe.
It was a viscio
So the tube became my BFF.
For a while.
Until I started hating it.
We would feed him overnight by a pump and it would slowly fill him with specialized formula.
Until he rolled over and kicked out the insert and then formula leaked all over him and the crib.
And then it was 3AM and my husband and I were changing pajamas and crib sheets cursing the damned tube.
But then oldest got admitted a few times to Children's Hospital with Pneumonia and the tube helped him get better because we didnt have to worry about antibiotics getting into him or him spitting out medicine. I used to joke that every child should have a tube just for medicinal purposes.
Oldest got his trach out at 19 months of age and we then started to work on speech because he hadnt uttered a sound- ever; until that day. He didnt know how to babble or make cooing sounds because for 19 months, the trach blocked his voice. March of 2004 was the first time I heard my son cry out loud.
19 months after he was born.
So you can see how feeding became a secondary issue for us.
We were working on other milestones like crawling and walking. Clapping and tracking objects. Making sounds. Learning to talk and verbalize.
But oldest is in Second Grade now and has caught up to his peers in most areas.
Dont think that Im not grateful for this
I marvel in his accomplishments every day.
What we all; as parents, take for granted (the normal every day things like eating) has always..ALWAYS been a struggle for my child. He has always progressed at his own pace so when eating didnt come naturally for him (or easily) I said to myself, okay, were moving slow but he will get there.
But we arent there
And although I truly do NOT believe he will have a tube forever, getting there is much harder than I thought.
I know people cant get why he just DOESNT eat.
Eating and sucking and swallowing are a natural process.
Babies do it from the moment they are born.
My oldest never did.
It was never natural for him
So he had to learn how.
He had to learn how to chew and to swallow and to sip through a straw.
And he never took to it easily.
And lets not forget the food allergies just to put the icing on the cake.
So his senses never get heightened when he smells home baked chocolate chip cookies because he really has never known what it is like to be hungry.
Because we have always tube fed him in between.
Ive tried to "let him go hungry" but it doesnt really work.
I dont want to paint you a totally bleak picture.
He eats.
Some
Just not a lot
And what he eats takes him an hour to chew and swallow
And this is not an exaggeration
And whatever he eats in that hour, is not enough to carry him over to the next day without having supplemental feeds because an 8 year old boy can not live on 400 calories a day.
There are many days that this doesnt bother me too much.
I go on with our day to day living because this is all we have ever known.
Inserting supplemental formula into my child by a tube inserted into a stomach..its all we've ever known.
Ive been running this marathon for a really long time now.
I guess I was hoping it would be a sprint
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