My Mistake

So Evie is doing much better. After talking with a good friend this morning, I found out that by actually looking at the nipple, on the rim, you can find out its size. Well, as it turns out, 2 of the nipples were level 2s! Poor thing! I wish that I had known to even look for that! So my Mom went out today and bought some newborn level one nipples. Uhhg. If only I'd thought of that, we probably would have been spared all this extra grief!

To let you know, her Special Formula is called Portagen. It is made with medium chain fats. These are the kinds of fats she can have. AS far as her formula goes, I make it up every 24hrs. I make enough to last the entire time period. Her formulation can change every week depending on her weight and how many calories she is supposed to be having. Right now, her formula consists of Portagen powder, water, canola oil (this is another source of Med. Chain fats that help to sustain her, and 1 oz. of breastmilk. The Breast milk will never increase. She gets 1oz a day, until I run out. After we found out about this, I could not breast feed her due to all the long chain fats found in Breastmilk. I did, however, pump enough to last a good while. I stopped because not only was it incredibly painful to only pump, but my supply had dwindled down to hardly nothing. I tried More Milk Plus, I tried hot showers before, I tried relaxing and praying before I would pump, and still, I got about 10ccs. her formula provides all the added nutrients she would usually get through breastmilk or even other formulas. As far as I know, it is not lactose free. As a matter of fact, she will probably have to drink this to have those nutrients well into adult hood because her body needs vitamins and things that she will be missing out on because of her diet. Most LCHAD Children drink this mixture Morning, Noon, and then at bedtime with added cornstarch to help it last longer so that they don't have to wake up as frequently to eat. Often, they have to drink this either before or after exercising, sometimes both, because they use up a lot of energy and this is the best way to get them more.

Every other day she gets a dose of DHA, for her eyes. This supplement helps to break down fats behind her eyes so that they stay in good shape. There is concern for LCHAD patients to develop retinopathy, a disease of the eye. Taking DHA is a way to prevent this.

I hope I have answered all questions reguarding Evie's eating habits. Please feel free to ask more! It is a learning Process for me and my hubby. We are always striving to learn better how to prevent a metabolic crisis.