Our New Little Lady

Introducing Lillian 'Lily' Mae

One of many of Lily's newborn pictures

Snuggled in on our way to KC

Strapped in and ready for her first flight at 2 weeks old to Kansas City

Such a good big brother!

Goof ball

So alert

Happy Halloween! Our little race car and kitty cat

Snoozing

So pretty

Snuggle time during movie night

Already practicing her "duck face"

FAVORITE newborn picture

I know I know, it has taken me 3 weeks for my first post about our little angel. I wanted to wait till I knew as much as possible about our lady's condition.

I have not said much to anyone but when Lily was a week old we got a phone call from her doctor saying that her acid levels on her newborn screening were a little high and we needed to come in to re-do her newborn screening. Well we got the results back and her acid levels were even higher. After we received this news they informed us that Lily is at High Risk for Isovaleric Acidemia. It is a rare Organic Acid Disorder that only affects 1 in 250,000 babies. 

When we got this phone call telling us the news, our family doctor wanted us to come in right away to run some tests and so she can look her over again. This was last Friday.

Yesterday we flew up to Kansas City to take our baby girl to Children's Mercy Hospital to meet with a Genetics doctor. They ran some more labs and tests that we should hear back by this Friday. 

These past few weeks have been very stressful and emotional for our family and we ask to please keep my little Lily in your prayers. This can be a life threatening disorder and we pray that she does not have a severe case. We feel so blessed that the specialist is optimistic about Lily's case but will know more after we get her labs back this week and after we do some Genetics testing which will take around 8 weeks. 

Other than all of this, Lily has been doing great. She is not a fan of her medication but is getting better with her special formula she has to take. She is a great sleeper (during the day), and such a snuggler! Big brother is adjusting and doing well, he in smitten with her. As is Hubbs. We all are actually!

I am confident that whatever case of Isovaleric Acidemia that Lily has, she has the best doctor's possible and will receive the best care. We are becoming better educated on this Organic Acid Disorder and are ready to take it on.

Did I mention that our sweet girl decided to come 7 hours before she was scheduled to arrive? That's right, stinker wanted to come on her own terms. We went into the hospital around 11pm the night before and she was born at 12:35am on October 23rd. She was scheduled for 7:30am. She was 21 inches long and weighed in at 7 pounds and 15 ounces. Today, at 3 weeks old she is already 9 pounds and 5 ounces!! This makes the doctors more optimistic too because a side effect of this disorder is failure to thrive... Not her! Our little chunky monkey!!