Lil Lils

Today we got admitted to Utah Valley Regional Medical Center with Lily. She has been diagnosed with "failure to thrive," which doesn't mean anything other than that she isn't growing right. We don't know what is wrong, but something is indeed wrong. Here is her medical history to this point.

At birth Lils weighed in at thundering 5 lbs 9 oz. = 5th percentile
At 6 months - 11 lbs 13 oz = 3rd percentile
At 9 months - she is not there yet, let's back up a few weeks.

September 10th - Lily had blood and mucus in her stool... we freak out.

Later that day we go to the doctor, with diaper in hand (gross.) Get Lily's vitals, and she only weighs 11 lbs even... we freak out again. = no longer a percentile, like that is really small at 7 1/2 months.

Present (8 1/2 months ) - 10 lbs 12 oz = 1 millionth percentile, or something like that...

Putting that in perspective-

Fact 1 - She weighs at 8 1/2 months what the average baby weighs at about 7 weeks.

Fact 2 - The average baby weighs 18.5 lbs at 8 1/2 months.

Fact 3 - 95% of all babies weigh at least 15.5 lbs at 8 1/2 months.

And to review:

• Birth: 5 lbs, 9 oz
• 6 months: 11 lbs, 13 oz
• 7.5 months: 11 lbs
• 8.5 months: 10 lbs, 12 oz

So, here we are beside Lily's hospital bed, with her with an IV in, and a feeding tube down her nose. Elena is at Christy and Tom's and they are trying to figure out all of her medication, trying to remember to wear chemo gloves for diaper changes, and changing their house into the weird sterile environment that she needs.

Lily grew up a lot tonight- between the feeding tube and IV trauma and not being able to nurse. It's hard to have her be so little and lay there screaming at us and not understanding why all of a sudden she can't nurse anymore and why we are letting people hurt her so much. :( As Briana rocked Lily to sleep after we got back in our room after getting her NG tube inserted, she was laying there wide eyed on Briana's shoulder looking at me with furrowed brows and a thoughtful expression, like "why'd you let that happen to me, dad???!". Poor baby.

What it could be-

We are all hoping that she is just having a food allergy problem of some sort. Today she did her favorite thing for the last time in her life: nursed. She is getting a special formula called Elecare with no complex nutrients. It is disgusting and she doesn't want it, so she gets the feeding tube and IV fluids. If it is an allergy then she should start gaining weight immediately.

But, maybe not. The doctor (gastroenterologist) says that it could be an allergy, but he has never seen this kind of weight loss from that. Also allergic reactions generally show up in blood tests with elevated immuno-responses (such as esophils, an allergen fighting white blood cell), but those tests are normal.

What else then?

Don't know, but there aren't many pretty pictures, so we are hanging on to that while waiting for other test results.

-Eric

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On a really good note: you guys rock. We've almost met our donation goal of $3,000. $2700 and counting! Thanks for the support and the bright spot in a crazy week.