Saturday, July 9, 2011


Okay, I'm better now that I let out that scream. The Dancing Queen has been "eating" the same two pieces of turkey sausage for 20 minutes. She shoved them both in her mouth when she misunderstood her dad's question as to whether she would eat candy. She said yes and shoved the sausage in her mouth because she knew there'd be a price. The Mad Scientist only meant to learn whether DQ had room for more food, but she is 3 and thought she was actually getting the candy. Since I too misunderstood the Mad Scientist, I got her candy. Yet, with the motivation of a chocolate kiss, she is not swallowing the sausage!  AUGH!!!!!!!!!!!

Getting DQ to eat is so frustrating! When it is all said and done, with those two very small pieces of sausage, DQ ate four bites of turkey sausage link (about 1/3 to 1/2 a link), two bites of a frosted strawberry pop tart (low fat even--another AUGH!!!!! why would you buy lowfat when you plan to give it to DQ!!!!), 4 ounces her crazy, ridiculous, expensive amnioacid only formula (aka milk), a swig of orange juice, and one chocolate kiss. We'll be lucky if she got to 200 calories on that meal. AUGH!!!!!!!

Yes, I know many kids are picky eaters and that breakfast doesn't sound too appetizing, but it doesn't really matter. DQ refuses to eat breakfast. Every. Single. Day! Usually, she requests chicken baby food for breakfast. She prefers the number 2s (small jars) and eats about 1/3 to 1/2 a jar (maybe 40 calories), then some yogurt covered raisins, and 6 ounces of milk. In total, about 230 calories. She is supposed to be getting about 1500 calories a day! And if she had her choice, she wouldn't drink milk, she'd drink water!!!!!!! The milk provides the most calories and nutrients for her and water has none o that! AUGH!!!!!!!!!!!!!

DQ eats slightly better for lunch as long as she is not tired. If she is tired, she won't eat a thing. Dinner, she usually does fairly well, but still nothing compared to TRex at her age or even TRex at her size. At 3 years old, DQ is the same size TRex was at 18 months old.


DQ loves food, especially burritos, chili, and spaghetti. She plays chef all of the time. She tries everything. She just won't eat. She did food school with the feeding therapists. We did the exercises at home with her. She improved leaps and bounds, but still, IT IS NOT ENOUGH!

DQ saw her GI doc yesterday and on their scale (the one I trust the most) she still weighs about 25 pounds. The Dancing Queen is almost 40 months old and she weighs almost 25 pounds. *Heavy, heavy sigh*

Her GI doc is the very best and DQ has improved since her last visit because she is not vomiting. We even made it through a dinner at Big Boy last weekend without DQ vomiting on the table. Huge victory for us! And since DQ has been complaining of chest pain at breakfast every morning, he decided to switch up her meds to see if we can get some improvement.

I desperately hope the med change will work. DQ needs to eat because she needs to grow. Growing is the only chance she has at survival. I'm not too concerned about her being small stature. I want her pulmonary arteries to grow. I understand that the pulmonary arteries stop growing around age 6 or so (maybe I'm wrong and it is older, I couldn't find this "fact" online in a quick search). If 6 is the magic age, we're over halfway there and DQ's pulmonary arteries are too small for her current size, let alone a teenager or an adult size. She needs to eat to grow those arteries. There are no interventions, no medicines, no surgeries to be done to help those grow. If they stay small, as the rest of her grows and her blood increases, her pulmonary hypertension will get worse. Her heart can't take much more strain. It already works harder than most hearts. It beats like she is exercising in her sleep.

Does anyone have any suggestions to get DQ to eat more?


  1. Have you tried letting her help prepare her own food? I know you have limited time but encouraging her to to so and suggesting that she tastes as she goes along to see if it's right might get more nutrients into her. The son of my husband's cousin never seemed to eat anything. I suggested this to his mother. She even took it a step further and let him accompany her to the grocery store and pick out some food. Something worked as he has just graduated, with honors, from Loyola. I know the whole thing is frustrating to you. The D.Q. is too young to understand how important her nutrition is but maybe if she's more involved, she might be tempted to eat more. Good luck!


  2. The big calorie boosters in our household are olive oil and avocados. We saute literally everything in olive oil and I used to put a splash of it even in Gracie's level 2 baby food. Instead of microwaving chicken nuggets we saute them on the stove in olive oil. Gracie is also really motivated by dipping things in high calorie ranch dressing. I'm so sorry DQ is struggling with eating. I know how frustrating and tiring that can be.

  3. We do the same! Except we use safflower oil for DQ. Her cardiologist has us put it in everything. DQ does love ranch as well, but she can't really have it since she is soy intolerant. I once purchased an uber expensive bottle on non-soy mayo to make ranch for her and then she wouldn't eat it. Apparently, only soy mayo is good!!

    Thanks for the comment!!!!

  4. our pediatrician had us turn milk into chocolate milk when my son wouldn't drink milk. Worked AWESOMELY! He pretty much drank only chocolate milk 'til he was 12. When I made it, I didn't add a ton of mix, but when you buy it pre-made it has lots of calories! On that same note - maybe milkshakes.

    Also, assuming you can find one that works for the soy intolerance, my son dipped (still) chicken nuggets and other stuff into honey mustard dressing.

    Even with a healthy child - pickiness is frustrating and it is worrisome when they don't eat. :(

  5. Oh Girl...we struggle with our oldest. He barely eats 4.5 his 19 month old brother out eats him at every meal. It drives my husband absolutely bonkers and they square off constantly (which I kind of think is some of the reason he doesn't eat...and also bc he just doesn't require much food). Anyways, I don't have any great wisdom..just wanted to let you know I'm thinking of you all. I know how frustrating it is. (and I owe you an email!)

  6. I have no ideas...I need some myself. We have tried EVERYTHING and still Hope eats like a bird...a very SMALL bird. I know how you feel about water...Hope loves it and so do the boys. They always have a cup and Hope always seems to find that before she even thinks about drinking her high calorie juice. She won't drink any milk-based product at all...EVER. She had a few bites of a chocolate chip pancake for breakfast. That's it! I hope you find something that works...we can't seem to find it.

  7. feel free to delete this since I am giving a link to my blog here and you might not want it (perfectly fine) - but I am attaching it because it has the different names I gave to some foods that made my kids eat the foods. Same food, just a kid-friendly name. My kids were picky when they were little and are still pretty conservative with what they will eat/try - but the have gotten better with age - so there's always hope.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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