Another Nutrition/Liver Update

Every couple of months I get a coupon from shutterfly for a free 8 x 8 book.  I always swear that I'm going to use it.  It seems like I'm throwing $30 away to not claim it.  But then I wait until the night that the coupon expires and there's no way to put together a 20 page book in such limited time.  Then I always swear I'm going to make a book and have it saved and ready the next time I get another coupon.  I never do.  It's a vicious cycle. 

My latest coupon expires in 1 hour and 1 minute.  I tried.  I really tried to put together a book from our Disneyland trip last January, but I put too many pictures on each page and had a bunch of pages left at the end.  I threw in the towel 15 minutes ago because I'm being realistic that I can't finish it before the coupon expires.  Oh well.  It gives me time to blog.

We saw Dr. Miloh and the nutritionist last Thursday.  Elliott had increased his weight gain to 25 grams a day.  Dr. Miloh was very pleased.  The nutritionist was shocked.  I think she had already planned her speech telling me I absolutely had to put Elliott on a bottle.  Instead, there was no more talk about me pumping at all.  We also all agreed that he probably would have gained even more if he hadn't been sick, because illness increases your metabolism and calorie needs.

The plan now is to keep using the supplementer with 1.5 ounces of pregestimil per nursing.  We're also going to add 1 tsp of Duocal to each 4.5 ounces of formula.  Duocal is a high calorie, powder nutritional supplement ideal for medical conditions where extra calories are required for catch-up growth (per the duocal website). Elliott is eating about 12-13 ounces of formula every 24 hours, so that's about 3 teaspoons of duocal, which equals an extra 45 calories a day. 

When the nutritionist was explaining how much to give him she said that I needed to use a measuring teaspoon, like the kind you cook with, not the kind you eat with.  Then she asked if I had such a thing in the house.  I wanted to slap her.  I just really, really don't like her and her attitude. 

Elliott was laying on the bed 2 days ago and Spencer said that he was getting bigger.  I notice it too.  His face is filling in a little and his legs and arms are ever so slightly chubbier.  He is fitting nicely in 3 month clothes, which is amazing since his adjusted age is just 9 weeks and he's had cholestasis basically for his whole life.  I tell ya, this liver disease is nothing to fool around with.  Your liver does everything in the human body.  I'd go as far as to say that it's more important than your heart.  All a heart does is pump.  The liver regulates everything else.

The liver:

• synthesizes amino acids
•  metabolizes carbohydrates
•  stores glycogen, iron, copper and vitamins A, D, E and B12
• produces and secretes bile which helps the body absorb and digest lipids, fats and fat-soluble vitamins
• breaks down or neutralizes naturally produced substances that are harmful to the body
• removes harmful foreign substances and toxins from the body by metabolizing and filtering these substances from the blood

I hope that everybody is current on their hepatitis vaccines and that you are being careful with alcohol and medications, both prescpription and not, (and it goes without saying: no illegal drugs) because you do not want to mess around with hepatic health.  And that is something that you could, and should, needlepoint on a pillow.

Dr. Miloh also confirmed that all of Elliott's blood and urine results in his mini metabolic panel were normal.  He has no indicators of any metabolic disease.  We are so relieved.  The plan is that we are going to continue to put weight on Elliott and go back in 2 weeks for a follow up.  We'll do more lab work a few days before to check on his bilirubin level and GGT.  I am so happy that the bilirubin is going down, but I am constantly worried about that GGT.  Normal, if you will remember, is in the 100's and Elliott's was last in the 1500's.  We also see the epileptologist next week.  The whole seizure issue has taken a back seat to the liver issues for now, but I'm hoping we can start figuring out the seizures soon.  Stay tuned.

Some fun pictures to end this post before I head to bed.

Daddy and his boys

Spencer and Elliott "playing" together

Brothers

(side note: the shirt that Spencer is wearing is a 5T and the shorts are a 4T.  When did that kid get so big?)

(second side note: he still comfortably fits into several pairs of 2T shorts, so I guess it really depends on the brand.)

Daddy and his boys again

Elliott, this morning, looking curious.

1 hour later in his second outfit of the day after his diaper leaked and he peed all over me and my favorite nursing pillow.

One more fun story.  Elliott was screaming his head off when I was in the shower this morning.  I got out and quietly said his name.  He stopped crying, opened his eyes, looked at me, totally recognized me and started smiling.  It was awesome!  Then I got another 5 minutes out of him to let me comb my hair, get dressed and brush my teeth.  Yes!  Progress!