Off the Charts Small

Last Friday we went to another skeletal dysplasia clinic.  We met with 10 different specialists.  They were all worked up about her weight.  "She's off the charts small" they all said.  She is now 12lbs 13oz.  Though they were alarmed about her weight, they were casual about the solution.  They suggested that we try the G-Tube, or at the very least an NG-Tube.  Like it's no big deal.  

It's as if they were saying, "Oh your hairstyle isn't working for you, try bangs."    

Inserting a tube, by surgery, directly into Niko's stomach and feeding her through a bag isn't no big deal.  

Even the NG-Tube, which does not require surgery, is painful to think about.  An NG-Tube is a thin tube that runs up your nostril, through the nose, past the throat, and down into the stomach. 

And they delivered this suggestion like, "Oh if you don't like the scissors required to cut bangs, try a hair clip."  I understand that these are options to consider if Niko is not feeding by mouth.  But so far, she's feeding quite well, a lot better than even a couple months ago.  She takes about 20oz to 27oz of formula or breastmilk a day.   

I know Niko is small.  Yes off the charts small.  But that chart doesn't apply to her.  She shouldn't be compared to healthy babies anymore.  In the world of I-Cell children, Niko is where she should be.  I think that I-Cell kids reach an ultimate weight of anywhere from 13lbs to 20lbs.  I made it very clear to all the doctors that I'm happy with where she is.  Her stomach is completely full after a feeding.  And when I push her to feed more, she spits it up. She knows when to stop.  I'm completely fine with her staying on the small side as long as she's "healthy" for her length and able to meet her very modest milestones.   

She actually looks the healthiest she's ever looked.  She's doing very well.  She has made huge improvements over the last month.  She's now very engaged and social.  She makes direct eye contact with people and smiles often.  She can extend her arms and reach for objects.  This is her newest accomplishment and a pretty big deal in my opinion because soon she can potentially chose her own toys or fetch her pacifier.  I would love for her to gain as much independance as possible so that she can enjoy the world she lives in and make her space work for her. She now bats at objects and plays with toys.  If only she can improve on her sleep then we'll be over a huge hump. 

Here she is reaching, batting and using both hands to bring toys together.  

She's learned to suck her thumb at short intervals.  She's on her way to self soothing!