Good News and Bad News

First, the bad news - After another round of blood work, we have been told that we have to switch Lillie to 100% soy formula.  The galactose is building up much faster in her system than what the doctors can understand.  She'll have more blood work done on November 6th to see how the soy is affecting the numbers.  They like to see the galactose-1 phosphate level (what they are testing for) stay under 1 and she is up to 9.6, up from 5 a few weeks ago.  These numbers don't mean a lot to me, but if the healthy range is 0 to 1 and she's at a 9.6, it sounds like we need to be doing something differently, hence the change to all soy.  I have decided to continue pumping in the off chance that she will be able to bf again.  In the mean time, I'll be donating the milk to local collection efforts here since it accumulates really quickly when your baby isn't drinking it!

And onto the good news - Lillie is sleeping through the night!  It started about 10 nights ago.  She had been stuck on a 6 hour stretch (which, by the way, I do NOT consider sleeping through the night since I need a full 8 hours myself!) for a few weeks when all of a sudden she started sleeping 8 hours, then 9 hours, then 10 hours, and now she averages between 11 and 12 hours at a stretch.  She goes to bed around 7:30 pm and wakes about the same time the next morning!

More pictures coming soon!

Another update on the Galactosemia

I don't know if I ever posted the results from all the blood work that we had done on Lillie regarding her Galactosemia. She is what they call a "dg" - she has the Duarte variant of Galactosemia, allowing her some ability to break down milk sugar. We were given the clear to nurse again at 3 weeks old. So for the past month, she's been eating at Moms.

Another round of blood work on September 17th revealed that nursing exclusively is proving too much for her to handle. The treatment: alternate soy formula with nursing and have blood work done every month to monitor how she is handling this. We also have an appointment with the genetics doctor on staff at Children's Hospital on November 6th to discuss how Lillie will be followed through her first year.

In all other respects, Lillie is perfectly healthy. What a blessing that they now screen for this and we have a treatment plan.

2 Months!

Lillie turned 2 today - 2 months old that is! She is really starting to develop a little personality and is becoming a much happier baby as the weeks go by. She is more alert and spends more time interacting with us. Her favorite songs (so far) are "itsy bitsy spider" and "If you're happy and you know it".

She had her two month check up today and she weights 11 lbs 2 oz. Babies will gain up to an ounce per day in the early months of life. She managed to gain 42 ounces in 30 days! The nurse that weighed her said "she must be a formula baby!" and was surprised to find that that we nurse exclusively! I will occasionally pump to get her used to a bottle (so that others can feed her) and she is taking 5 ounces pretty consistently. This is a lot for a baby her age so I guess it's no surprise that she is gaining weight faster than average. Her weight puts her in the 60% percentile (up from the 26th at her one month check up!). She grew one inch (which is pretty average) and is now measuring 23 1/4" long. Her length and head measurements are tracking pretty close to each other (in the 85th percentile).

Some pictures from the past 10 days or so...

Come on mom, can we get this over with?!
Something caught her eye on the tv while her and Harvey were hanging out together!
One of her latest skills to develop is her ability to hold on to something for extended periods of time. She had these rings in her hands for over 5 minutes while she flung them around.
and she played with her new friend for a few minutes...
Finally, a picture from today, on her 2 month birthday!