Life + Meeklets: Annie - 2 weeks and growing....

Post bath bliss

Wow! Almost a week has gone by since our last post! I have to blame Comcast (for an unreliable internet connection the past few days) and my new one-armed lifestyle (if I'm lucky, usually I'm out both arms - although, hard to complain - baby filled arms are quite the blessing!)

So what have we been up to? Plenty! Annie lost her crusty belly button...we're very excited to have a nice clean belly button now :) That also means she can fully enjoy bath time - which she seems to love! She had her first public outing (not counting the countless trips to the hospital!) - we took her to Oswego Dragstrip Days on Saturday in the stroller. She slept through the heat, loud cars and countless baby lovers that had to get a peek. She's also been on quite a few walks with Momma - loving this gorgeous weather we've been having! We also had a nice visit with Aunt Colleen, our good pal, Nate and Grandma & Grandpa Meek this week ... AND...Annabelle had her first baby sitter already! Grandma Fitzpatrick came to stay with her while we went out to dinner for Momma's birthday. All went well, but we were glad to get home - 2 hours is a long time to leave such an adorable baby! ;)

Classic Galactosemia
We also have an update for any of you that have been following our newborn screening test saga. Annabelle originally had some abnormal test results from the routine newborn screening that is done 24 hours after birth. We have been aware since 3 days old that there was a chance Annie could be Galactosemic. After seeing a specialist and further testing, we got the news on Monday that Annie indeed has "Classic Galactosemia". We're still in the process of educating ourselves - a few days ago we couldn't spell Galactosemia, much less know what it was!

So what is it? -- Essentially Annie is missing enzymes that break down galactose. So she will never be able to ingest galactose. No milk, cheese, butter, or dairy of any kind. Galactose is also found in some fruits and vegetables...all sorts of foods really. We'll be getting a diet plan from our dietitian once she starts solid foods. So for now - she's safely on soy formula and should be thriving just fine. Galactosemia is NOT to be confused with "lactose intolerance" or a "food allergy" - this is not something she will "grow out of" - it will be a life time of diet management.

What happens if she has galactose? -- Since she can't break down galactose, from what we understand so far, it is deposited in ways that affect the liver and brain. Essentially, any galactose is "poisonous" to her. So, until we understand this better - please DON'T FEED THE BABY! ;) Mom & Dad will handle that. No, seriously though, a lick of an ice cream cone, or slipping her something else forbidden - well meaning aside, will cause serious complications.

So how does this happen? -- Ha! Someone buy us a lotto ticket! (sorry, trying to maintain my sense of humor about this)... A Galactosemic is found in 1 out of every 65,000 births, and we've seen statistics that there are only 800 people in the US with Galactosemia. It also turns out that Jeremy and I must both be carriers, and obviously never knew it. And by both being carriers, we had a 25% chance of having a Galactosemic child....

So what happens now? -- For now, she's being "treated" the best she can. We have her on soy formula, which is perfectly safe for her to have. Being that the condition was caught so soon, she only had 3 days of "milk" - and hopefully no damage has been done. Until we start introducing solid foods, her diet will be as simple as any other baby diet. Once we do start introducing solids, we will work very closely with her dietitian, and she will likely need supplements to help her get any nutrients and vitamins she is lacking. Long term, there is a chance she will be a bit smaller, and slower developmentally -- however, there is just as likely a chance that she could thrive just fine. The closer we can monitor her diet, the better chances she'll have to live a completely normal life. And so far, we seem to defy all the odds...here's hoping that we start defy them in a positive manner from here on out!

I will be listing some Galactosemia websites on the side bar of this blog for anyone wanted to do more research. We're learning by the day and will share information as we get it. Thanks for all the thoughts and prayers - we know all we need is some education and a lotta love and everything will work itself out.