Harper Daisy Prince . . ."Hurricane Harper"

February 3, 2018

 

My name is Kimberly Prince, and I'd like to share our story about our daughter, Harper Daisy Prince.  Harper was special right from the beginning.  After suffering a miscarriage, I was terrified to try to get pregnant again, fearing another loss or complication.  I already had a healthy 3 year old, and I knew I wanted more children.  Eight months later, we found out we were pregnant with Harper Daisy Prince - our rainbow baby.  

 

Everything seemed fine until I got a phone call from the genetic specialist telling me he needed to see me first thing Monday morning.  While doing all of the 12 week genetic tests, Harper tested positive (1 our of 5) for Trisomy 18.  

 

Did I mention this call came on a Friday afternoon?  So I did what any person would do when they know nothing about this sort of thing.  I took to Google.  BAD IDEA!  I was in hysterics all weekend thinking I was  going to lose another baby, or have a baby whose quality of life would be less-than.  

 

We went in first thing Monday for a sonogram, and she was okay!  I cried happy tears for what seemed like forever.  The specialist was worried because she was really small, and we set a game plan into action.  Every two weeks from 13 weeks until 38 weeks I'd have a sonogram to chart her growth pattern, and have weekly fetal monitor checkups.  

 

When it came time for delivery, I labored for 5 hours before being rushed back for an emergency c-section due to a drastic drop in her heart rate.  She came out bigger than they anticipated at 6 pounds 2 ounces of perfect little baby!  We always knew she was small.  Her pediatrician told me from day one that she'd be small.  I just chalked it up as one of those things.  I was little in my teens and didn't hit puberty and get a growth spurt until I was 16.  My husband and I just figured she would be a late bloomer like her mother.

 

In the back of my mind, I always just had this feeling that wouldn't go away and that I could never really articulate correctly.  She was a pretty healthy kid, minus the 3 sets of tubes in her ears, the 2 adenoid surgeries, and the tonsillectomy.  

 

Harper turned 4 in June, and at her well checkup, we were referred to an amazing endocrinologist.  Harper had not grown in almost a year and a half.  So, we went through the whole arsenal of blood draws, x-rays, scans, etc.  And, you guessed it, she was daignosed with Turner syndrome.  

 

Suddenly, all of the things I had pushed in the back of my mind made perfect sense.  There was an explanation for some of her physical features.  I was relieved to have answers.  

 

Her endocrinologist is amazing and spent an hour on the phone with me sharing endless information about Turner syndrome.  She even informed us that her TS could have been determined by doing an amniocentesis during all of those specialists checkups.  We're about 8 weeks into her Omnitrope (growth hormone) injections, and while it's getting easier, some days are hard.  What kid likes getting shots, much less one a day?

 

You can't help but to be drawn to our little girl.  She has the biggest personality and more energy than anyone I've ever met.  She's extremely independent, stubborn, and equal parts sassy and tomboy.  She has no filter, and has zero problem telling you what's on her mind.  Everything she does, she does big and with intense purpose.  She keeps up with her 8 year old brother, and has a love/hate relationship with her almost 3 year old sister, who is bigger than Harper is.

 

We affectionately call her "Hurricane Harper."  We've had people say to us, "So what?  She's just small," or "It's not that big a deal," and "Be glad it's just