The White Food Experiment

Tuesday we took Hana to Stanford for an appointment. I remember when she was still in the CVICU at Stanford and was starting to stabilize and we started hearing about what might happen next. One of the things they mentioned was that some kids stay until in the hospital until they get a heart transplant, they may have to go on ECMO or a Berlin heart. But then there are some kids that get “well enough” to go home on oral medications and some of those kids even do well for years before they need a heart transplant. There are some of those kids that even end up improving. They couldn’t tell us which scenario would be Hana because they don’t yet understand why some kids do well or even improve.

So far, Hana is one of the kids doing well on oral medications. Her echocardiagram, although not worse, is still very severe. On the outside she looks like a normal baby. She is thriving and growing and developing. The term they used was “exceptional compensation” – her heart is very, very sick looking but she appears to be doing very well. There was a pediatric cardiology fellow that joined Hana’s attending doctor for the exam. He, especially, seemed to be very impressed to look at her (after having just reviewed her latest echo).

I feel very fortunate. It’s a reminder on how fortunate we have been.

At Stanford talked a lot about weaning her from the tube and the risk that they are willing or not willing to take with the wean. She is doing well, perhaps because everything is managed so carefully right now. Once the tube is out that becomes harder. They would like her to weigh 10kg before we do anything drastic like pull the tube out and see if her hunger will make her eat. She weighed in at 8.45 kg, so she is still gaining about 7 grams a day. They decided to drop her mid-day Lasix dose because her BUN was so high, but we’ll see how she does and if she starts to retain fluid. We don’t have to take her back to Stanford for three months!

I got the impression that I need to be more patient (when it comes to her feeding progress).

On a daily basis, moment to moment, some things are still a lot of work – mostly on my mind in this category is feeding. Today I made specially prepared baby food in forms and textures that I thought would be more conducive to eating. I took them to our feeding specialist appointment, which we haven’t been going to because the therapist was on vacation. Hana didn’t want to eat the split peas. We mixed them with yogurt and then she ate some, but just a little, maybe a teaspoon. Then we tried some string cheese. Hana ate almost half a stick! It was very encouraging. The final conclusion was that she likes and trusts white food.

I really had my doubts at first – could a baby really prefer foods that are white? But the feeding specialist assured me that it was not crazy to think she only likes white foods. I guess it makes sense, breast milk is white. Yogurt is white. Mashed potatoes are white. All the foods that we have the most luck with are white. So we wrote down a list of white foods. Over the next week I am going to introduce as many white foods as possible to see if that makes a difference. So far we have yogurt, cheese, cottage cheese, vanilla pudding, chicken breast, cauliflower, white asparagus, tofu, rice and white beans.

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9 thoughts on “The White Food Experiment

  1. I don’t like split peas either! Hate them. And mixing them in with something else won’t work for me either!!
    Look at that pretty baby! If I was close by, I’d take her out to get ice cream – VANILLA!!

    Liked by 1 person

  2. Bananas?

    I agree with Gary about ice cream. When I was pregnant, many years ago, the doctor wanted me to drink 8 glasses of milk a day. I couldn’t drink that much so I substituted ice cream. I gained 60 pounds! Beer and ice cream pack on the pounds. Hana probably won’t like beer….yet.

    Liked by 1 person

  3. To look at these pictures you’d never guess that she has a sick heart. She is so beautiful and her spirit just shines through….

    Like

    1. A little late to the white food party here, but pasta is a big hit with Penelope. I use spaghetti or small shapes and stir through some butter while it’s still hot for extra taste and nutrition.

      Also, you may have tried this – but Penelope LOVES anything frozen. So I make a smoothie blend of yoghurt, fruit, and almond or peanut butter and then freeze it in ice cube trays. I chop the cube up into little shards and she picks them up and eats them like that. You could def make a white version of that one.

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