Doing Well!

After a week full of meeting with doctors, nutritionists, genetecists, etc., so far Ella is doing great. More and more we are seeing bits of her big brother in her - sans the sideburns & big feet, of course! [picture of Matthew at 5 days old] She is sleeping well, though we are having to wake her every 3-4 hours at night to feed her...otherwise she might sleep longer. That is and will be the protocol for the next 6 months - and after that we may be able to begin to extend that time some (and allow dad and [mainly] mom a little more sleep!).

The feeding is going very well - we give her about 3/4 ounce of a mixture of formula / Polycose (carbohydrate supplement) / ProViMin (increased protein supplement) and then she goes to Robin for the remainder of her feeding. She is also taking L-Carnitine (liquid oral supplement) every 8 hours. As breast milk alone is about 45% fat, the thought of the nutritionist at Emory is that by taking the formula mixture - it reduces the amount of fat to about 30-35% of her total caloric intake (which is really what all of us should be doing!). As MCAD patients cannot properly break down their own body fats, this will help ensure that she doesn't get too much and to that point. Regarding the L-Carnitine, although it is naturally made within the body, supplementation helps the body's metabolism run smoothly and is useful in preventing low blood sugar. It also assists in removing metabolic wastes from the cells so a buildup of toxins will not occur.

For times when she is sick (cold, fever, virus, etc.) and/or not eating, we were prescribed a glucose monitor to test her blood sugar - I opened the box to see how to use and am a little angst-ridden about having to stick her with that little needle "gun." I am certain, though, she is probably less frightened than me as she was stuck about 12-15 times the first 24 hours of her life and has had a multitude of labs done on her since then. If blood sugar is in fact low, we are to give her a liquid polycose solution OR a finger-full of cake icing (yes - cake icing) in her cheek to quickly boost her blood sugar and call the doctor immediately. From there, we will be given further directions and likely take her to the ER for an IV of glucose D10 (D5 is most common). All that said, the whole point is to avoid her body trying to break down stored fats for energy - as that is when she could enter into a crisis.

Thanks to everyone for their thoughts - hopefully the above gives you some more insight into Ella and the disorder. I am sure it will become 2nd nature in no time! Take care.