A few weeks back we had a scheduled, 48 hour E.E.G. for our beauty. This wasn't our first stay with the blender in tow. The first time I had to explain, and re-explain how I feed my child, until eventually everyone just told me to do what I do, and didn't ask anymore questions.
This time was pretty easy. Nobody seemed as alarmed or surprised by the idea of it. Nobody asked about calories. The stay itself ended up being sort of hellish, and extended. But that's not the point of this post.
You see, after they unhooked all of the leads from Beauty, and we got on the elevator to go downstairs, she began having a cluster of seizures. We landed ourselves in the e.d., and she hadn't had anything to eat yet that morning. After a few hours of being there, and waiting on a room, I asked the nurses if I could feed her.
With full support of everyone, I blended a meal for my daughter in the emergency department.
We ended up being re-admitted on a floor we haven't been on since Beauty was all formula fed. The dietitian who saw us remembered us. She could not believe the difference from then to now. She told me she had to write something down for every child, but felt like I was doing a great job with her and didn't need exact details. She was completely supportive. She came back after doing some work nearly bursting because she had plotted the height and weight on a growth chart. She was ecstatic to see how well she was growing, and went so far as to say she might encourage some other families to try this.
I've heard horror story after horror story about doctors being unsupportive. We've had our share of hesitancy and misunderstanding with the medical community regarding the diet. However, there are doctors, nurses, and dietitians who are willing to cheer you on. You may have to look , or you may be lucky enough to stumble across them, but when you find them, they will be some of your biggest cheerleaders. There's nothing like balancing a horrible hospital stay with being told that something you are doing for your child is so amazing.
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Tuesday, July 2, 2013
Monday, May 27, 2013
Comparing tubes and mouths.
I get wearied sometimes by the number of doctors who need to know. I need to know how many calories she's taking in each day. I need to know how much water, how much whole milk, what's her totals. I roll my eyes and do my best to respond kindly so the doctors know that I'm competent, and that I'm not going to give in to their push.
The biggest frustration is that nobody asked me when my oldest daughter was eighteen months old what she hate, how many calories, how much milk, and how much water. I was given some guidelines. Some 'children of this age need this much milk' sort of suggestions. But nobody was ready to freak out over my daughter's water intake. Mostly, because if she chose not to drink, there wasn't a lot I could do to change that.
So, being the researcher that I am, I decided to compare what a day looks like in my Beauty's food and water intake, to that of a typical eighteen month old, who eats by mouth.
Beauty:
8 a.m. 4oz water.
8:30 a.m. breakfast blend. 308 calories. 20ml (1/3 of an oz) water flush.
11:30 a.m. 2oz water.
12:00 p.m. 2oz whole milk, 1/4 cup roasted chicken, 1/3 cup broccolli, 1/3 cup raspberries, 1/2 slice g.f. bread. 206 calories. 20 ml water flush.
5:00 p.m. 2oz water.
5:30 p.m. 2oz whole milk, 1 tablespoon sunflower seed butter, 1/4 cup peas, 1/2 slice g.f. bread, 1/2 cup frozen peaches. 271 calories. 20 ml water flush.
8:30 p.m. 8oz whole milk. 150 calories.
10:00 p.m. 4oz. water.
calorie total=935 whole milk total=16oz water total=13oz
18 month old who eats by mouth (I don't have times, but that doesn't matter so much).
1/2 peanut butter banana muffin. 113 calories.
8oz whole milk. 150 calories.
2oz. cheddar cheese. 228 calories.
1/2 chocolate graham cracker. 33 calories.
A few bites of grilled pork chop. Approximately 5 calories.
2 oven fries. 6 calories.
Low fat, mozzarella string cheese. 70 calories.
1/4 cup goldfish crackers. 200 calories.
8oz. 3/4 water and 1/4 juice mixture. Drank around 1/3. 10 calories.
calorie total=815 calories. whole milk=8oz. water=around 3oz.
The second child is growing, and has great parents. It's okay that he didn't eat tons. It's the plight of small children. Some days they eat. Some days they don't. There's not a lot you can do about it. However, my Beauty eats healthy, balanced meals everyday. She has no choice in the matter. So the next time a doctor decides to push me to count calories, I will kindly point them to this post, and tell them we are just fine, thank you very much. Feel free to do the same.
The biggest frustration is that nobody asked me when my oldest daughter was eighteen months old what she hate, how many calories, how much milk, and how much water. I was given some guidelines. Some 'children of this age need this much milk' sort of suggestions. But nobody was ready to freak out over my daughter's water intake. Mostly, because if she chose not to drink, there wasn't a lot I could do to change that.
So, being the researcher that I am, I decided to compare what a day looks like in my Beauty's food and water intake, to that of a typical eighteen month old, who eats by mouth.
Beauty:
8 a.m. 4oz water.
8:30 a.m. breakfast blend. 308 calories. 20ml (1/3 of an oz) water flush.
11:30 a.m. 2oz water.
12:00 p.m. 2oz whole milk, 1/4 cup roasted chicken, 1/3 cup broccolli, 1/3 cup raspberries, 1/2 slice g.f. bread. 206 calories. 20 ml water flush.
5:00 p.m. 2oz water.
5:30 p.m. 2oz whole milk, 1 tablespoon sunflower seed butter, 1/4 cup peas, 1/2 slice g.f. bread, 1/2 cup frozen peaches. 271 calories. 20 ml water flush.
8:30 p.m. 8oz whole milk. 150 calories.
10:00 p.m. 4oz. water.
calorie total=935 whole milk total=16oz water total=13oz
18 month old who eats by mouth (I don't have times, but that doesn't matter so much).
1/2 peanut butter banana muffin. 113 calories.
8oz whole milk. 150 calories.
2oz. cheddar cheese. 228 calories.
1/2 chocolate graham cracker. 33 calories.
A few bites of grilled pork chop. Approximately 5 calories.
2 oven fries. 6 calories.
Low fat, mozzarella string cheese. 70 calories.
1/4 cup goldfish crackers. 200 calories.
8oz. 3/4 water and 1/4 juice mixture. Drank around 1/3. 10 calories.
calorie total=815 calories. whole milk=8oz. water=around 3oz.
The second child is growing, and has great parents. It's okay that he didn't eat tons. It's the plight of small children. Some days they eat. Some days they don't. There's not a lot you can do about it. However, my Beauty eats healthy, balanced meals everyday. She has no choice in the matter. So the next time a doctor decides to push me to count calories, I will kindly point them to this post, and tell them we are just fine, thank you very much. Feel free to do the same.
Tuesday, March 19, 2013
Things the professionals say.
It seems so simple to me, that doctors, nutritionist, and any other professional working with your child would be all for a parent feeding their child real food. But this isn't always the case. Perhaps the formula industry has done a really good job of making everyone believe that their formula really is the perfect food. Maybe professionals are just that far removed from being able to remember that a person with a g-tube is a person, and not a patient, and that food is what is needed, not a formula used like medicine.
We were getting our formula covered through beauty's insurance. A can, that cost around 15 dollars at any big box store, was around 90 for the insurance company to pay for. We got around 1200 dollars worth of formula every month. Even if that money isn't coming straight out of my pocket, that is completely unacceptable. I spend 1/4 of that on our grocery budget, a month, for four people.
Here's what happened for us though, when we switched. Our beauty has some amazing doctors. We also have a few that aren't that great. Such is the way with medicine. The two that mattered the most (our Primary and our Developmental Pediatrician) were completely on board the moment they saw the changes in her.
The others, well, I have heard it all now. 'It will hurt her tube.' 'Do you have anyone helping you with that?' 'It increases the risk of infection.' 'You have to be careful of her sodium intake.' 'It's so much more work.' 'Formula has all the nutrients she might need.' 'She still needs milk.' 'How many calories is she getting each day?' 'What is the base for your formula you are making?'
First, and foremost, formula is chemically processed food. Most are made up of a whole list of things I can't pronounce and don't understand what they are. When my four year old began eating solids, nobody questioned how many calories she was getting. When we switched her to whole milk and table food at a year, nobody asked questions. No one argued that I should put her on formula because it's nutritionally complete. Nobody questioned her sodium intake (and if you have ever looked at the name brand 'toddler foods' that are prepackaged, they contain more than 100% of the rda of sodium for a toddler. Maybe doctors should be asking about it). I fed her whatever I wanted. And while our family eats healthy, and a wide variety of fruits and vegetables, there are families feeding their toddlers soda and chips.
As far as infection goes, what? I don't know how others feed, but pushing food in during mealtime, and then flushing the tube, there really is no higher risk than having her hooked to a feeding pump with milk in it for hours at a time. Matter of fact, the risk seems lower to me since milk starts to go bad at some point.
I don't need help feeding my family nutritious meals. Beauty eats better than my oldest daughter did, because she can't refuse anything. She gets more fluids in her, because she has no choice. She 'eats' things like raw spinach, salad, tuna, hummus, quinoa, flax seed, and the list goes on and on. While my oldest was not a picky eater, just like every toddler, she had meals she ate so little I wondered if she would be sustained. She got sick and refused to eat for a few days. She got busy, and no matter how often I offered her water, she didn't want it. This adds up to the fact that my sixteen month old, eats better than probably every other sixteen month old out there who eats by mouth. When she's sick, she still gets healthy food, and I can give her extra fluids.
More work? HA! Perhaps there are families who feel this way. And that's fine, they do what works for them. But apparently the doctors missed the part where I was cleaning up puke multiple times a day. Putting things in a blender three times a day, blending it, and feeding it to my kid, adds around ten minutes to each meal time. That's less time than she spent hooked to a feeding pump before. I'll take my 'more work' any day over what we had going on before.
We don't have a base. Some families do. Once again, I don't have a 'base' for my oldest daughter, and I don't need one for my youngest.
I know there are families that have a much different experience with tube feeding. One of my friends has a daughter who is on a diet for renal failure. Blending for her is much different that it is for me. Kids with severe allergies, metabolic disorders, and a whole list of other issues have to have specialized diets. They might be families who do need more help from someone on what should and should not go in their blends.
However, lots of kids with g-tubes have them simply because they cannot safely eat by mouth. Therefore, their tube, is just their mouth, in a different location. There is really no need to make feeding them any more complicated.
Doctors, nutritionist, and other professionals, please stop heaping on more work and anxiety for parents. Most of us who have children with g-tubes already have more than the typical parent does for day in and day out. Don't add to that. Be supportive. Be encouraging. Be willing to learn, but don't assume, we as parents, are incapable of figuring out how to feed our children.
We were getting our formula covered through beauty's insurance. A can, that cost around 15 dollars at any big box store, was around 90 for the insurance company to pay for. We got around 1200 dollars worth of formula every month. Even if that money isn't coming straight out of my pocket, that is completely unacceptable. I spend 1/4 of that on our grocery budget, a month, for four people.
Here's what happened for us though, when we switched. Our beauty has some amazing doctors. We also have a few that aren't that great. Such is the way with medicine. The two that mattered the most (our Primary and our Developmental Pediatrician) were completely on board the moment they saw the changes in her.
The others, well, I have heard it all now. 'It will hurt her tube.' 'Do you have anyone helping you with that?' 'It increases the risk of infection.' 'You have to be careful of her sodium intake.' 'It's so much more work.' 'Formula has all the nutrients she might need.' 'She still needs milk.' 'How many calories is she getting each day?' 'What is the base for your formula you are making?'
First, and foremost, formula is chemically processed food. Most are made up of a whole list of things I can't pronounce and don't understand what they are. When my four year old began eating solids, nobody questioned how many calories she was getting. When we switched her to whole milk and table food at a year, nobody asked questions. No one argued that I should put her on formula because it's nutritionally complete. Nobody questioned her sodium intake (and if you have ever looked at the name brand 'toddler foods' that are prepackaged, they contain more than 100% of the rda of sodium for a toddler. Maybe doctors should be asking about it). I fed her whatever I wanted. And while our family eats healthy, and a wide variety of fruits and vegetables, there are families feeding their toddlers soda and chips.
As far as infection goes, what? I don't know how others feed, but pushing food in during mealtime, and then flushing the tube, there really is no higher risk than having her hooked to a feeding pump with milk in it for hours at a time. Matter of fact, the risk seems lower to me since milk starts to go bad at some point.
I don't need help feeding my family nutritious meals. Beauty eats better than my oldest daughter did, because she can't refuse anything. She gets more fluids in her, because she has no choice. She 'eats' things like raw spinach, salad, tuna, hummus, quinoa, flax seed, and the list goes on and on. While my oldest was not a picky eater, just like every toddler, she had meals she ate so little I wondered if she would be sustained. She got sick and refused to eat for a few days. She got busy, and no matter how often I offered her water, she didn't want it. This adds up to the fact that my sixteen month old, eats better than probably every other sixteen month old out there who eats by mouth. When she's sick, she still gets healthy food, and I can give her extra fluids.
More work? HA! Perhaps there are families who feel this way. And that's fine, they do what works for them. But apparently the doctors missed the part where I was cleaning up puke multiple times a day. Putting things in a blender three times a day, blending it, and feeding it to my kid, adds around ten minutes to each meal time. That's less time than she spent hooked to a feeding pump before. I'll take my 'more work' any day over what we had going on before.
We don't have a base. Some families do. Once again, I don't have a 'base' for my oldest daughter, and I don't need one for my youngest.
I know there are families that have a much different experience with tube feeding. One of my friends has a daughter who is on a diet for renal failure. Blending for her is much different that it is for me. Kids with severe allergies, metabolic disorders, and a whole list of other issues have to have specialized diets. They might be families who do need more help from someone on what should and should not go in their blends.
However, lots of kids with g-tubes have them simply because they cannot safely eat by mouth. Therefore, their tube, is just their mouth, in a different location. There is really no need to make feeding them any more complicated.
Doctors, nutritionist, and other professionals, please stop heaping on more work and anxiety for parents. Most of us who have children with g-tubes already have more than the typical parent does for day in and day out. Don't add to that. Be supportive. Be encouraging. Be willing to learn, but don't assume, we as parents, are incapable of figuring out how to feed our children.
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