Four years of Annie.

Annabelle June will be 4 this week.

 

Four years...?  Only 4?  Or 4 already?  I'm not sure which is more fitting, but I feel both equally.

 

Hard to believe we once looked like this:

A few weeks before we were three.

No one called me mom, I had NO idea what "full time job" meant, I had no idea I could love like I love now.

So much changed on July 14, 2009, as it does with any baby, and any mom could type out some heart felt story about how their child changed their lives. 

And of course, I will. ;)

There she is!  Pink, loud, amazing...we made a person!

Incredible.  I know, I know...like we're the first people to make a baby.  Obviously it's been done before, but really, once you do it, wow... (that's all I got, WOW.)

Here's the little miracle again.  A day later.

As I was flipping through pictures to use for this post, it struck me.  Before we even left the hospital, our little peanut, was already taking on that orange (jaundice) glow.  We had no idea.  First time parents.  I'm sure the hospital staff assumed she had her hue due to typical infant jaundice, and sent us on our way.

Our sweet, orange, jaundice baby.  We were home for one day - and a day away from news that would rock our world.

At a routine, three day old check up, we started to suspect something wasn't right.  I'll spare the details, as I've told that story before.  But it was then that we first learned of galactosemia, detected by a newborn screening test (hmm, I vaguely remember tucking some sort of paperwork into a folder, regarding some info that would never pertain to me, right?)  It was possible, that baby Annie was "galactosemic", nothing confirmed, but to be safe, we put her on soy formula.  That's right, because after 9 months of researching the importance of breast feeding, and 36 hours in the hospital being tortured by the breast feeding nazi-nurses...we now found that breast milk could potentially end the life of our baby, at the very least, decrease her quality of life severely.

Woah.

Days 3-10 are a complete blur to me.  We started to put the pieces together, Annie's jaundice, a few other liver signs, daily trips to the lab for heel pricks to test bilirubin, and hours and hours a day we couldn't cuddle her as she was strapped to a photo light blanket to bring down her bilirubin.

 

THE day.  Day 5.

I post this horrible picture, because I know there are other parent's out there, right now, on day 5.  This was the day everything we read about galactosemic infants came true.  Annie was ultra jaundice, completely lethargic, she didn't budge for over 24 hours (no eating, no fluttering her eyes at us, a limp, orange, noodle).  Sadly, this was the first day the new grandparents visited Annie at home, we all passed her around, trying to pretend we weren't all as nervous as we were.  I had only been a mom for 5 days, but that was enough to know, this was not right. My stomach turns just imagining all that I didn't know that day.

I think I was always destined to be a "hover-mom", probably too cautious, too involved, over-bearing?  But whatever my potential, this day, solidified my future parenting.  I would have run to the ends of the earth with that baby searching for answers - and four years later, that's what we're still doing.

Annie was born on July 14.  On July 27th, the official results were in.  She was indeed a "classic galactosemic", Dad got the call at work, and came home to tell me over an early lunch.  I was just getting out of the shower, I sank to the floor in a towel, finding it hard to breathe.  Crushed.  At that moment I knew, any hope we held out for some false positive was over.  Complete devastation.  As if I hadn't spent every chance I had, researching galactosemia, and sweating over the complications: liver damage, brain damage, speech issues, learning disabilities, tremors...

The initial results confirming our diagnosis.
 

By now, Annie had adjusted to her soy formula (beyond the usual infant colic-y time that we would endure till about four months).  Her color had improved.  She had "come back to life" from that tragic day five.  Yet I was still gasping for air, on pins and needles, trying to make sense of everything.  Talk about a curve ball...

We struggled, and loved through that first year.  Luckily for me, Annie eventually took over.  I'm sure she could sense my nerves and worries, maybe because I held her and cried the majority of the first month?  Maybe the way day five of her life changed me forever, it gave her the will to show me I could let up a little? 

Who's lethargic now?  Annie, one year after entering our lives. 

 



And she turned two.
(FYI, this was her first french fry, and first food ever "out")

She became a big sister at two and a half.  Welcome little sister, Emeline.

Annie turned three. 
She looks miserably galactosemic doesn't she?  (sarcasm, in case that's not dripping through the screen) 
Her birthday party was this day, she read half of her birthday cards herself.

Nearly four.  Growing up fast.  Absolutely beautiful.

 

 Today, we are a family of four:  Dad, Mom, Annabelle & Emeline.  If you saw us walking down the street, you'd never imagine we had anything but an uneventful start to parenthood four years ago.  Currently we are fully involved with The Galactosemia Foundation as the outreach coordinators.  I would give anything to go back in time and give "day-five-new-mom-me" a hug.  So that's what we try to do, comfort new families and share our story.

www.galactosemia.org

 

We have been incredibly lucky to have a local support group, GAMA (Galactosemia Association of Midwest America).  Individuals and families from this local group made our first year bearable. Their support provided those first few months, is really what inspires us to reach out to the next set of new families.

www.galactosemiamidwest.com

 

We also owe a great deal of thanks to Newborn Screening and a diligent doctor.  Without an early diagnosis, Annie's healthy beginning might not have been what it was.  Because of this, we are currently getting involved with the Save Babies Through Newborn Screening Foundation.  Every galactosemic baby should have the start (or better) that Annie did.

 www.savebabies.org

I made Annie's birthday post about galactosemia.  It's so not what she is about.   Really, she loves to read, tell really good (and many horrible) jokes, she sings, she dances, she loves her friends, she's sassy and sweet.  She starts preschool this fall.  She's my fishing buddy, she's an amazing hiker, and loves the outdoors. 

She's a caring big sister too!

But regardless of our luck thus far, and our seemingly complication free trip through galactosemia, I can't forget those first few weeks, and those who aren't as lucky.  Our future is very uncertain, and our efforts with the wonderful organizations making a difference will continue to be a huge part of who we are.