Tuesday, October 21, 2014

Once Tiny, Always… TINY?

Here we are, a couple of weeks past Finn’s 3rd birthday, and I am reminded of this picture.  Of this season.  A season we thought had basically passed through and moved to the other side of.  All the struggles of prematurity and delayed development… The day of his first birthday party was also the day we participated in our first March of Dimes March for Babies.  Finn’s shirt won the T-shirt design contest (just like this year, too!).  His shirt said, “Once Tiny, Always Strong.”  We loved that shirt.  And as we approached and passed the milestone of his third birthday, we thought we would start being released from some of the specialized physicians we see.  But, this was not the case… 

Let’s turn back the clock 6 months.  We had seen our local pediatrician because we were concerned about Finn’s weight gain and stature. She started us on an appetite stimulant, and referred us to an endocrinologist in the City.  It took 6 weeks to get in with him, and in that 6 weeks the stimulant medication had worked WONDERS on our boy!  He was growing, eating, and  developing at amazing pace.  We did find out something new at this visit, however.  He asked if we knew that our son had been diagnosed with “SGA” after his birth.  I had no idea what that was, so I said no and asked what it meant.  He told us it meant he was “Small for his Gestational Age.” In other words, Finn was smaller than the average 26 week 5 day gestational age baby.  Once Tiny. But, based on that and the other presenting factors, especially the success we had with the recent prescription, the decision was made to stay the course, but to make a 6 month follow up “just on case.”  That appointment was scheduled for October 20.

On October 5, 2014, Sweet Mr. Finn turned 3.  Feisty, Finicky, Fearless Finn.  Funny, Fretful, Fighter Finn. Fabulous, Flirty, Fickle Finn.  We celebrated at his pre-school with cupcakes that week, and had a small gathering at home for his friends and family.  His favorite things are play-doh, Legos, and all things FLAGS – especially American flags!  It snuck up on us, and it took our breath away.  We made it!  “Early Childhood!”  THREE!  And he was doing so well!  At or just barely below all his developmental milestones for his age.  A glimmer of normal…
 
And as all 3 year olds do, he had a well-child check with his pediatrician the next week.  Where everything checked out well – and the only shot he had to get was for flu prevention.  Except… Except for the pesky little fact that he’s not getting any bigger.  He weighs 26 pounds (9%) and is 35 inches tall (3%). Her exact words were, “he’s not growing as we would expect.”  I guess with parents both over 6 feet tall, an uncle who stood 6’7” and a 7 year old brother pushing 5 feet and 95 pounds, being tiny definitely isn’t “expected.”  She went on to say she thinks this is something beyond just being born prematurely and we probably ought to keep the appointment with the endocrinologist.  Man!  We just knew we were going to leave there and call to cancel that appointment because we were doing so well.  No such luck.
Fortunately for us, we already had that appointment on the books, AND it was just a few days later.  Easy enough to pass the time.  With thoughts and fears and hopes and dreams.  With questions and concerns and prayers and tears. With hope and love and cuddles and kisses.  We are weary.  All of us, from the fight we have been on for these past 3+ years.  And we truly thought we might be on an upswing. Only to be brought back down by the crest of this wave.  A wave we will ride, but not without adversity, I am sure.
Monday, we spent the entire day in Oklahoma City.  After dropping all the big kids and their respective schools in Stillwater, we were off.  First stop – the pulmonologist.  Where, even with this newest round of cough and congestion from allergies that Finn is struggling with, we were given a clean bill of lung health and made a plan to be back after the first of the New Year.  Then, it was lunch at Jason’s Deli (YUM!), a jaunt to the mall to play on the indoor play equipment, then to Mercy Hospital and the OU Children’s Clinic to see Dr. George, our endocrinologist.  The lobby was busy and bustling – very different from the last time we were there.  And the wait seemed intolerable – our baby had already had a long day!  But little did we know what was to come. 
He was very thorough.  The doctor, that is. Very patient. Thoughtful; deliberate with his words.  He seemed to waver back and forth a bit about what our plan of action should be.  He asked lots of questions about the past 6 months, about his prematurity, and about family history of stature.  This was the plan of action we decided on as a team.  Even though his was diagnosed “SGA” and currently below the 10th percentile for both height (3%) and weight (8%) and he would probably qualify for growth hormone therapies, we are going to give him until age 4 to catch up some more.  Always Tiny?  In the meantime, the physical examination yielded no evidence of hormone deficiencies, but there could always be some underlying factor only detectable by more comprehensive testing.  And there’s no time like the present.  The doctor ordered an X-ray of Finn’s left hand to determine bone age, and 2 and a half PAGES of blood labs – that needed to be collected in 4 different vials. 
The bone age test will determine if his bones indicate the same aging as his chronological birthday.  If his bone age seem to only be 2 years, then he has a lot of growing left to do and he will probably catch up.  If his bone age is 3 (or more), well, then, we probably need to help him catch up.  We went down to radiology – where the wait was long and the room was tiny.  But Finn LOVED the X-ray tech and getting his picture taken with her BIG camera!  Even if it was of his hand!  She was so sweet and kind to him.  And when she was checking to make sure she got a good image, she let Finn and I watch it render on the “pa-cuter” screen.  Finn saw his hand, then saw the images of the bones and he exclaimed, “It looks like Halloween!”
The blood work is testing for many different things – most of them over our heads.  The doctor told us that the 2 “big” tests take 14 days to get back. These tests are looking for anything else that might be causing the growth delays and any hormone deficiencies he may be experiencing.  It was off to the lab we went.  The lab wait was short, and the room more comfortable.  And the lab tech was excellent, too!  Kind, patient, caring, professional.  But getting a good stick on a squirmy, tired, coughing 3 year old proved to be a challenge.   One she could not overcome on her own.  She called in reinforcements (and THIS SONG was playing while she was gone - I knew my brother was watching over us!) in the form of an experienced nurse they called “Grandma Vickie.”  45 minutes, 3 sticks, 2 techs, and 1 teddy bear (his gift for being so brave) later, they got the 4 vials of blood needed.  And we finally got to go home.

The 2 week wait is upon us. I definitely left the clinic and hospital on Monday night feeling better.  Dr. George is in no hurry to push us into (expensive, grueling, time consuming) growth hormone therapies, but he wants to get to the root of the problem with some preliminary testing.  If these tests all come back within normal ranges, they become the “benchmark” for the tests we run next year – when he is four.  I like this plan.  I have every faith that the results will be favorable.  That the next 12 months will yield extraordinary growth for Mr. Finn. We serve a mighty God and we have prayed BOLD prayers over this situation.  We ask you to do the same.  In Jesus name!  Finn may always be tiny, but he will also always be STRONG!

As for the rest of us… Well, life keeps happening at break neck speed!  Emma and Lara both landed roles in the chorus for their middle school production of High School Musical 2 this spring and are constantly at rehearsals.  Lara is LOVING dancing at her new studio and is also helping with choreography on the musical.  Emma is working with a practice volleyball team to improve her skills and looks forward to trying out for the school team next year.  She is excelling at school and loves helping others.  Both girls got straight A’s the first 9 weeks of school – something they both worked very hard for!  Britt and I are both working, working and WORKING.  Working our jobs at OSU keep us in the know and young at heart while working on our weight loss and wellness journey (he’s lost 65 pounds, I’ve lost 45 – and both still counting!) and WORKING our AdvoCare business so soon we can live out our dreams with our family.  In the meantime, Jake just finished up his flag football season tonight with a double header.  SILVER BULLET ended the season UNDEFEATED!  Jake looks forward to playing with this team of amazing boys and coaches again next year.  He is doing GREAT in school – his teacher calls him the Gentle Giant.  I have felt the presence of my own Gentle Giant, Big Oaf to my Little Oaf, my Big Brother, many times over the course of the last few weeks.  None greater than in that lab when I was begging for guidance from above so those ladies could get the blood they needed form my sweet boy and we could get him to stop screaming, coughing and flailing about.  God provided.  He always does.  As I know he will through this season for Finn and our family.  God is good.  Finn is proof.  All the time. Once Tiny. Always Strong.
 

 

2 comments:

  1. Hello came across your "hello my name is" pin on pinterest which led me to this blog...I am a fellow preemie mom and am wondering where I can find that "hello my name is" to put our son's info into for prematurity awareness month... it's so cool! Thanks! Malea

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    1. Hey there! Sorry it took so long to reply. I have made an album on photobucket with the images. (Link: http://s598.photobucket.com/user/mommy2twisters/library/PREEMIE?sort=6&page=1) The one I used with my Finn was from last year (and is in the album), and I added this year's, too. They are from the "Preemie Support and Awareness" page on Facebook: https://www.facebook.com/PreemieSupportandAwareness

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