Friday, September 10, 2010

calling all heart moms! (and anyone else who is willing to help)

This boy of mine is pretty much skin & bones. When I weighed him today he weighed a whopping 27lbs 8 oz. Yes, this means he's actually lost a little weight. At one point he was pushing 29lbs. 
Lately, I've had his weight on my mind & I've been weighing him weekly on my baby scale. He just isn't growing. The boy eats like it's his job, but it doesn't stick. His little heart is working so hard & using up all those calories.
He needs to gain weight in order to have the Fontan (his next surgery). He's showing signs that he's ready for surgery, however he hasn't hit the magical weight of 35lbs. Dr. Rivera thinks that if Joshua hit 32lbs we'd get the green light. So naturally, that's my goal, the big 3-2!
Now here is where you come in...I need some suggestions!  I know just about every heart mom has fought this battle. What do you feed your kid?  I try to feed him healthy foods -but- I'm not a total health nut. In other words, give me any suggestions, whether it's healthy or not. I'd like to hear what you have to say!  Joshua is not a picky eater at all, so your suggestions needn't be toddler friendly. But if they are toddler friendly, that's just great! Please, help!!!!
(by the way, did you know Joshua is potty trained? It was a very long process & he still loves the comfort of his diaper (which coincidentally I like)...but he's been doing his business on the potty for a few weeks straight:)


Dina said...

when we were trying to get Jilly fattened up for her Fontan her pediatrician told us to put butter on everything. That did the trick. But the result is she still loves butter. She'll eat it right our of the tub. But it did help her to put on some pounds.


Jenny Lincoln said...

I hear ya! Aly has been at the exact same weight for months now and my husband and I were having the exact same conversation yesterday. It's such a fine line- you want to feed them healthy but you want them to gain weight like they are eating Big Macs for every meal. :) I'm excited to see what responses you get. The butter is a good one. I never thought of that.... I'm going to repost this to see if I can get us some suggestions too!

Wendy said...

Hi (fellow heart mom here), my 3 year old is 28lbs soaking wet. We use pediasure instead of milk in most of his cooking, add butter to everything (in and outside of grilled cheese for example), I even butter crackers before I add to his soup - which i make with pediasure!
Also you can get polycose from the drugstore which adds calories and is tasteless and textureless. Seriously tho, butter and heavy cream (if you don't have a pediasure prescription) helps a lot and can be hidden in most recipes and foods. We encourage dipping of all foods (ketchup with a touch of butter, ranch dressings, etc).
It's helped, slowly but surely. Clearly Chris isn't a big 3 year old but he was able to have his gtube removed so it's working!


Katie said...

Dito on the butter & pediasure. I haven't ever cooked with Pediasure but she's always gotten it in her whole milk (which I use a 1/2 pediasure/ 1/2 whole milk mixture). Maddie will eat butter off of the tray as well :) Kind of gross but I think it's helped??? She's 29 lbs. right now at 2 1/2. I've tried cooking with heavy cream as well as adding cooking oil to her noodles, etc. Making smoothies with creamer and icecream is also a great one! I too, let Maddie dip at most meals (ranch, ketchup, sour cream).

Have you ever wondered what we'll do years from now when their arteries are all clogged from eating all of the foods we gave them? I've asked our card. this and she said not to worry, it's just important that we pack on the pounds now while still giving them healthy choices.

Glad to hear that Joshua is a great eater- his friend Maddie is too. I think we're pretty lucky!!!

Kyle and Alli said...

Yep, you are right! I think that every heart mom goes through this same issue! We do a lot of things which seem to help Grant put on weight. He is a big milk drinker, so we add a few tablespoons of heavy cream to all of his milk cups, and olive oil to V8. We feed him tons of cheese, avocados (although he will only eat it if it has a spicy kick to it in guacamole form), olives, nut butters (he loves nutella). Friends of our boost calories with lots of milkshakes and carnation instant breakfast powder added in but we can't get Grant to eat it. We offer ranch for dipping for everything, adding butter or olive oil to his portions of foods. You can also think of what you can add in to cooking to add calories... cream cheese, sour cream, Parmesan cheese, mayo, etc. I am not above using junk food on occasion and Grant loves most chips and especially cheetos. Good luck on the eternal weight gain issues!!

The Simmons Family said...

Owen doesn't EAT much but since I blend and he's 30lbs, I'll give you a little insight. LOTS of fats. Peanut butter, almonds, avacados, lots of good oils (even smother his veges in them if he'll eat it), pasta, brown rice, whole fat yogurts and milks, oatmeal, I could go on and on.

I don't have to get him to eat it, but he will eat a little of everything above. I have him on a 1300 cal diet. Try making him Jamba Juices once a day... and you can throw all kinds of high cal goodies in there without all the sugary crap.

Berries, banana, honey, oatmeal, yogurt, oj, whole milk... you can have a 450 cal meal in a cup for him to drink and he'll think it's a treat! You can even freeze them and make healthy cal filled popsicles. Owen will even eat them!

You gotta think.. lots of calories in a little bit of food. Did you know just a handful of nuts has like 130 calories? You can even give him yogurt or chocolate covered ones from whole foods markets if that helps him eat them. Owen LOVES them!!

Adding calories like tbsp honey 60cals, 1scoop of flaxseed 70cals, 1tbsp of flaxoil 120cals, 1/3c oatmeal 150cals, it adds up!!!

Too fast.. when we're the ones eating it. Ha.

Tara said...

I posted on Aly-Jean's blog that I have researched a little on coconut milk/cream/oil...It is VERY high in calories and does have nutritional benefits as well. I believe it has about 32 calories per tsp. (100 per tbsp).

Haven't tried it yet because we are still gaining slightly, but Im ready to start it if Liam starts plateauing.

Mary said...

Is there a nutritionist you can consult? They might have even more tricks up their sleeves.
When the first mom mentioned butter, I also thought of peanut butter because I know it's fatty as well. It's pretty easy to add peanut butter onto just about anything!
If you make things like mac n' cheese you can always substitute regular milk with heavy cream, or even sour cream which is pretty fatty and you can up the amount of butter it calls for in the recipe.
I'll try to think of more...

Carlla said...

I have that problem with Aiden. He was 27 lbs. at his check up last month. I butter Aiden's food with real butter. Sausage, bacon, eggs, pretty much anything it can go on. I add cheese to things that I dont for the rest of us. I always add extra butter to anything we butter. I add cream cheese to a lot of things, like, spread some on the bread inside a grill cheese, or in pasta, in scrambles eggs with cheese, spread a little in a Cheese Quesadilla. I also put Carnantion Instant Breakfast in his milk for the extra calories. I use to use pediasure, but switched. Another idea is to add instant powdered milk to regular milk. When I feel like he is not eating very good, (which is normal for him, but when it worse) I make shakes out of the instant breakfast but I use ice cream & milk and add bananas. I use regular everything for him. I have a list of extra calorie ideas that the dietician at UCSF sent me. It says to take advantage of the high calorie, high fat, and fried foods. Anyway, I can look for it and send you a copy. Hope this helps.

kirk and carrie said...

Send him to live with me for a week. Guaranteed weight gain!

allison said...

I knew I turned to the right guys all have great ideas! Thank you so much & if you have more them! I'm excited to give these a shot! I'll keep you posted on his weight gain - it's gonna happen, I can feel it!!!

Andrea said...

These are al great ideas! When Drew was little he had prescription MCT oil, which it turns out, is basically vegetable oil. We'd just give him a few MLs a few times a day. Since Josh doesn't have a g-tube you would have to just add oil to other things he's eating or drinking. And full fat everything-yogurt, whole milk, etc is the way to go!

Andrea Riojas said...

My little girl is only 16 months old, but we've already seen her weight taper off and I have begun to worry. It's nice to hear others going through the same thing.
Has weight been the only thing to slow down or do you find that overall your heart baby is just smaller? My Rylynn is very petite now, but started out average.

Laurie said...

I have not had a kid with a heart problem, but I did have a failure to thrive baby. My pediatrician suggested ice cream (the really good stuff) right before bed nightly. They have a harder time burning the fat off when they sleep.

We were also told to mix sweetened condenced milk into anything we could. It is super high calories.

Not super healthy, but after doing it Hannah finally gained enough weight to make it into the 1st percentile for weight on her 2nd birthday!

Good Luck!

Craig Family said...


I was thinking PB, too. Give him a jar & a spoon!

Also, instead of pediasure, look in the pharmacy aisles at the adult drinks (not the diet ones) because they have more calories.

I would make him milkshakes w/fatty ice cream, heavy cream & add that body-building protein mix you can find at GNC. It's for bulking up.(remember luke trying to bulk up?! lol)

Put heavy cream or half & half on his cereal....add a scoop of flax seeds. Nuts, too, if he'll eat them. Or let him add marshmallows.

I would either give him all cream or half & half, or use a half gallon of whole milk that's only a quart full & add a quart of cream.

Chicken alfredo is very fattening. Use either the highest cal stuff in a jar, or make it from scratch using heavy cream, cheeses, etc. The best part is, you can add a huge handful of mozzerella to his or any Italian dish & it will be super good & fatty, too.

Stock up on string cheese...see if he'll dip in ranch.

Bacon.....I think he'd look good in a bacon diaper. :)

I make a breakfast burrito for the kids....butter the tortilla on both sides, add CHEESE, scrambled eggs (made w/cream), sausage or bacon, & more CHEESE. You can add fried potatos, too.

You could make him quesadillas for snacks...BUTTER the tortilla, a ton of cheese, another buttered tortilla. I think if you make a bunch you could have them ready in the fridge for him to eat as a snack any time....w/dip, of course.

Or buy him a $5 Little Ceasars pizza to snack on all day...crust is super caloric!

You can also get those mini cans of soda & let him have them when the girls are in school.

Give him a can of icing & some graham crackers & let him go hog-wild!

Nachos....tons of cheese, add some black beans, tomatos, hamburger, etc. Or use that crappy nacho cheese sauce.

Do you have a deep fryer? You can make cream cheese wontons & he can dip them in ranch or anything... super fatty! My kids love them. Lmk if you need a recipe.

Super heavy pancakes....bisquick recipe, but use a little less cream than it calls for (milk) so they're really dense....then let him go nuts with the butter & syrup. You can always dust with powdered sugar, hersheys syrup, heated jelly or even icing!

I know you said he eats like mad, but does he know he needs to gain weight? Maybe you can make a contest out of it....How much can Joshie eat today?!? Maybe even make a wall would help you keep track, at any rate. If you make a game out of it, or let him "sneak" it behind the girls' backs, it might even be more fun for

How disgusting is this stuff I'm coming up with?!?! I'm sure I can think of more....I'll let you know! lol

Craig Family said...
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Craig Family said...
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