First written on April 21, 2010


I am writing this post without knowing when or if it will ever be published.  I need to write.  I need to express my feelings and try to put into words all the confusing emotions that I'm feeling.  Today I woke up nervous about what the day would bring.  In only a few hours I would be sitting in the pediatrician's office with our sweet Lily, sharing with her doctor some of the concerns that we have for her.

Thinking back about the types of blog posts I have written about our baby, it's obvious that I avoid talking about her developmentally.  I write about the cute things she does, the sweet baby that she is, and of course how much we love her, and can't imagine life without her.  I haven't documented any baby firsts.  I haven't written about her first roll, her first tooth, her learning to stand, or even learning to crawl.  It's not that I've forgotten to write about these things, it's that they've never happened.  Not any of them.  She sits.  She smiles and laughs, she babbles, and she loves. Lily is yet to reach many physical developmental milestones that many babies her age have been doing for 6 months or longer.  Lily doesn't even stand when we hold her in our lap - something that babies as young as a couple of months can do.

She had her last well check at 6 months.  And while it was maybe uncommon that she hadn't reached some these milestones by that age, it wasn't so unusual that her doctor seemed concerned, so we went on assuming everything was fine.  At nine months, I was a little more concerned about things she wasn't doing, but after researching the internet, I found plenty of reassurance that some babies just take their time and not to be overly worried.  Since she was so healthy and wasn't due for any immunizations at nine months, I decided to wait for her 12 month appointment.  Not to mention all the H1N1 scares.  I didn't want to needlessly expose her to anything by taking her to a doctor's office.  

Now at 12 months, we need aswers.  I think I have prayed harder and longer in the last couple of weeks than at any other time in my life. I've prayed for Lily's health, I've prayed for the doctors.  Mostly I've prayed that I would be at peace with whatever outcome we would face.   

As Dr. Dorway and  I began talking about her, and some the things that she is and is not doing, he still didn't seem alarmed, like maybe he had seen it before and it was ok.  Then he began to review her growth charts.  For what seemed like forever, he went back and forth between the weight chart, the height chart, and the head circumference.  Then he said, "Lily, you are SHORT!"  Thoughts start flying through my mind like is she a midget?  Is she failure to thrive?  What's going on?  He didn't know.  He couldn't give us any answers, except what the numbers were telling him.  Which has basically this:  At birth up til about 6 months, Lily's head circumference, length, and weight, were all right around the 50th percentile.  Now at 12 months her head circumference continues to be normal for her age, but her weight and her height and have dropped to below the charts.  Her size doesn't fall within the measured range of infants.  In fact, she hits a whole graph square below zero.   On average, a 12 month-old will have tripled their birth weight.  Lily has gone from 7 lbs. 12 oz. at birth to almost 16.5 pounds at one year, a little more than doubling her weight.  If it were only her weight that had dropped he wouldn't be as concerned, but because her height has been equally affected, he thinks there might be something going on.

Now we wait.  We are waiting for the referral to see a pediatric neurologist.  Her doctor wants us to see a neurologist because he thinks there may be a problem with her pituitary gland, which not only affects growth, but sex organs, and the thyroid.  He said it could be a month before we can get in for an appointment, which just might be the longest month of my life.

Today I cried a lot.  I reflected a lot.  I thought about life, my family, and what matters most.  I thought about Lily's future, and what may lay ahead for her, and for all of us.  I don't know whether to start worrying a lot, preparing myself for the worst case scenario, or to just try to relax, knowing that we don't really know anything yet.  If it is her pituitary gland not producing properly, there are ways to stimulate that.  She might always be little, but little is ok.  Little can still be healthy.  The pituitary was only a first impression.  It's possible that it's something else.  I hate not knowing. Waiting is torture.

I am grateful for a supportive husband, loving friends, and family who would drop everything to be with us if needed.  I am thankful that I can pray anytime and anywhere, and know that my family is loved and watched over.

Posting may be a bit sporatic for the next little while.  I'll try to post updates as we receive them.