Finn - GHT 6 month update

Hard to believe we have been doing nightly "flu shots" (growth hormone injections) with our little guy for 6 months!  WOW!  But, the calendar says we have, and it was time for a check-in with our endocrinologist at OU Children's Hospital.  While we were looking forward to the visit and any news about our progress, we also knew we were in for updated tests and test results.  And that process did not go very well last time, so we were a bit anxious about the process this time.  Plus, it's really not ever FUN to take a kid to the hospital.  Even when it is an excellent facility specifically geared towards tiny humans.  It's stressful, and overwhelming, and exhausting. 

Since Finn's appointment was scheduled for late morning, we took the whole day off work.  The nice part about that is that we got to take all the other big kids to school before we left town.  Such a  special treat for all of us!  So, by mid-morning we were OFF to Oklahoma City!

Finn watching a video in his sunglasses

He loves Rudolph

Half way there car selfie!

We got to the hospital right on time, and after a quick restroom break, we signed in an waited our turn too see Dr. George.  Finn was so great when the intake nurse weighed him, measured him (3 times, of course!), and took his blood pressure!  He really is becoming an old pro at all this doctor stuff!  When Dr. George came in, and went over all the numbers with us, and did an exam of Finn.  I love how he always takes him time with us, talks to us in a way we can understand, and really interacts with Finn the whole time.  We never leave with any unanswered questions, and always feel well taken care of.

So here is what we learned this time!  The GREAT news is, Finn responds VERY well to Growth Hormone Treatment.  Since we last saw Dr. George in late August, Finn has grown 1.5 inches!  He is now standing at 40.5" tall!  We are so excited about this growth!  Over the last 15 months as we have worked towards a diagnosis and started treatment, he has grown a total of 5.5 inches!  He started in the 8th percentile, and now is in the 46th percentile.  This is GREAT news and we are so happy for Finn!

But of course, where Finn is concerned, it's not always going to be smooth sailing.  Unfortunately, since his last visit in August, Finn has only gained a few ounces in weight.  From 30.1 lbs to 30.3 lbs.  He is definitely not keeping up in this department.  In August, he was in the 15th percentile for weight.  This visit?  He had dropped off to the 5th percentile.  *sigh*  We attribute some of it to the cold he's been fighting for a couple of weeks.  We know at home he has weighed more, but even when Dr. George plugged in our "home" numbers he was not happy with the results.  We have been seeing a pediatric GI doctor as well, and we see him again the first part of February.  He has been pretty passive in the past, just giving us strategies and diet suggestions to get Finn to eat, but holding back on further testing and such.  If Finn doesn't gain a bunch of weight by this next appointment, we may be looking at further GI testing.

Finn being cute in the exam room

So, our instructions as we left the office were to keep the GI follow up in February, schedule with Dr. George for a 3 month recheck, head to the lab for blood work (YUCK), get Finn's weight up, and (the doozy in my opinion) reduce his growth hormone dose by almost half.  UGH.  I totally get why.  He's WAY too thin and we're not doing him any favors by not allowing his body to catch up a bit.  But it still hurts to turn back on something that's been working so well.  We're also going to keep a home weight log to be able to account for the ebbs and flows a little better between visits.  Next stop, THE (dreaded) LAB!

As we headed out, the nurse put Lidocaine (numbing cream) and Tegaderm tape (clear Band-Aid) on both of Finn's arms.  Again, he was such a trooper during all of this.  The sweet nurse said it was lotion and the tape would hold it in place.  Then she had his squish it so he could feel what it was like.  He loved this!  But, he also thought it rendered him unable to bend his arms!

"Look at my lotion!"

Seriously, we all thought it was so funny to watch him walk down the hall towards the elevator.  I just had to capture this moment with a video.  Here he is walking to the next destination - the lab!



Once we got to the lab, we were again extremely impressed with the way things are done at OU Children's!  It is all so efficient, and family friendly!  Finn was AMAZING!  Once we were in the  phlebotomists room, I told him he was going to sit up on the big chair.  And he did.  The nurse tied the tourniquet on his arm - which he didn't like, but stayed true and strong.  He let her peel the band aids off, no issues!  Now, when she got out the butterfly needle and he saw it, that was the first *flinch* we had seen.  But, he got over it!  The nurse got a good vein in one stick, gathered her 3 vials (!!!) of blood, and just like that, WE WERE DONE!  Finn did such a great job.  She let him pick which wrap he wanted for the stick site.  He chose green dinosaurs!

While we wait for the blood test results (not expecting anything out of the ordinary), we are trying to feed him, and we will keep the home weight log.  We see Dr. Altaf (the GI) in February and go back to Dr. George in May.  Keep praying for positive growth, and for weight gain and fewer eating complications.  We are so excited about how much the growth hormones have improved Finn's quality of life (less illness, less lethargy, more personality, more interactions, HEIGHT), but also want to make sure he is WHOLLY healthy so the eating issues have to be contained.  While for the first time in his 4 years of life he actually feels hunger and asks for food, he is "full" within  just a few bites, and is very hesitant to eat anything that's not Goldfish crackers, Chick-fil-A chicken nuggets, mac & cheese, or Pedia Sure.  We can get some peanut butter, Nutella, and the occasional ice cream treat in there, too, but his diet is very limited!

Thanks for all the prayers and concerns.  Finn is a fighter!  And has a great suoport system.  Including all of you!

But, I don’t want to push anymore...

You’re right.  It sounds whiny and selfish.  And you’re right, again.  Some days, I am whiny and selfish.  Some days, I am the exact things that cause my precious 2 year old son to drive me batty.  The biggest differences?  I can communicate effectively about it.  AND, I have opposable thumbs so I can TYPE about it and put in on the internet.  WINNING.

Parenting is hard.  Preemie parenting is a whole new ball game.  That, frankly, I didn’t buy tickets for.  They were given to me.  Forced upon me MONTHS before I was able to fathom the responsibilities that came with it.  While I can see them for the irreplaceable and miraculous gift that they are, there are times I want to say “NO, Thanks!” and give back the tickets to the crappy seats with the questionable view to the game with too many overtimes. But then, it’s the seventh inning stretch, everyone is happy and celebrating a comfortable lead, and I remember, not everyone gets to experience the game this way.  Not every Mom was trusted with the challenges of premature babies.  It’s an elite club.  One I am truly blessed to be a member of.

So, why all the baseball non-sense?  Because I have had a few of “those” days lately.  And it makes being a Mommy hard.  Life after NICU is not an easy road.  I am tired of pushing.  Pushing and pulling, coaxing and coddling, to get my baby to “catch up” to normal 2 year olds.  I often wonder WHY?  Why does he need to be normal or “within the range of normal” for a specific development?  We were often told in the NICU by well-meaning staff, and even by other preemie parents that were on the “outside,” that preemies were strong and resilient and that most of them in Finn’s situation (without specific medical complications at discharge) will “catch up” by 2 years old.  I am so grateful for a friend who I met for the first time when Finn was about 2 weeks old.  He was still in the hospital (of course), but I had come home to go to a party with some friends.  She was there, and she had a son who was 4 at the time who was a preemie – a surviving twin. She knew our story and who we were, and not 20 seconds into our very first conversation she told me, “They don’t all catch up.  People will tell you by age 2 he’ll catch up, but don’t be surprised if he doesn’t.”  Honestly, I hated her for that (we’ve talked, we’re over it – GREAT friends now!).  I hated that she had burst my bubble that I had worked for DAYS to build up just so I could come home to this party while my baby fought for his life.  Way to ruin my evening, Friend.  But looking back, I am SO GLAD she was so brutally honest with me.  While Finn is GREAT and PERFECT and WONDERFUL, he is tiny, and has lung problems, and some hearing loss, and speech delays, and feeding (texture) issues.  And he’s TWO.  He is not your average 2 year old.

This was all brought on by the milestones he has reached recently, and the ways in which he is still behind.  Right around his second birthday last month, Finn’s vocabulary really JUMPED!  We were so excited as 3 words became 10, 10 became 20 and 20 become 50 in a very short period of time!  The “plan” we had written with our Child Development Specialist (that comes 1-2 times a month to assess Finn, and has since the day he came home from the NICU), has indicated we wanted him to have 50 words, so we were THERE!  YAY!  Celebrations abound!  Until, she says, “OK!  Now, when I come next time we have to write a new plan with new goals.”  *sigh*  Over the last 2 years, we have done this several times.  Written a plan, met the goal, written a new plan.  He had a plan to get off the supplemental oxygen.  He had a plan to roll over.  To push up, sit up, stand up; crawl, walk, run; chew, babble, talk… And on and on and on.  We’re always working towards the next goal.  Always pushing.  Always pulling.  What if I don’t want to try so hard anymore?  It’s tiring.  It’s frustrating.  It’s disappointing when there is no progress.  Finn is still very much the same personality he was in the NICU.  He is stubborn.  Wants to do things his way and in his own time.  He was often on the brink of something good happening during his hospital stay (off the oscillator, on to bottle feed, etc), and he would regress and we would have to wait several days to get back to that point.  He is still the same way.  Reminds me of all the roller coaster dips and turns we took 2 years ago.

Here we were at 50 words, and we hit a plateau.  No new words.  No stringing 2 words together.  No sentences.  And, we noticed his eating habits were getting worse and worse, not better.  In his imaginary perfect world, he would like to survive on PediaSure (but only the vanilla or strawberry; hates banana, and I hate the chocolate because it stains) and Goldfish alone.  And because ANY food or calorie intake is better than none, I am pretty sure a few days he does just that.  But, that’s not what ne needs to be doing.  He gets 2 bottles of PediaSure a day.  (At an average of  $1.67 per can, that’s $3.33 a day, $23.33 a week, $95 a month – his drinking habits cost more than any of his brother and sister’s lessons or activities).  Some days, he gets 3 (cha-ching).  Plus, the 2% milk – typically flavored with strawberry or chocolate just so he will drink it.  He will only eat things that are crunchy (cookies, crackers, chips, cereal).  Nothing smooth (aside from an occasional pudding), slick or slimy.  This includes all fruits and vegetables.  His favorite meat is chicken.  And yes, we feed him beef, pork and shrimp but tell him it’s chicken.  It works.  Like 20% of the time.  The WIC nurse was upset with me at our last appointment because he doesn’t eat fruits or vegetables.  I was tired, and I know.  So I said, “OK.  YOU try to feed him and see how it works.”  I know it was rude, but did she honestly think I didn’t know he needs a balanced diet?  HE WON’T EAT!  Anyway – I know all the talking and eating issues are related.  He was intubated for 7 weeks.  That’s a super long time.  

Finn. Early days. Intubated.

So, here we are.  Pushing again.  He has decided the Buddy Fruits blended fruit puree pouches are acceptable again (when he was first introduced to solids we relied on these heavily, but he started refusing them months ago).  But only certain kinds.  I can't keep track of what he likes and refuses to even get close to.  You should se the fits he throws when he thinks we are trying to "trick" him with real milk instead of his beloved PediaSure.  Good times.  We are sneaking in veggies where we can, with limited success.  Our “plan” for this next 3 months is to get him to eat a better variety of textures, and to get to 2 word combinations (blue ball, bug truck, my fork). 

We talk and talk and talk to him to get him to repeat us.  Even if we’re tired.  And don’t want to.  And we throw away more food than you can imagine trying to get him to try just one more thing.  We could feed a third world village on Finn's scraps.  There are days when I really just want him to be “normal.” To have a “normal” day without constantly working with him to make some grandiose stride towards a goal.  So, I let us have those days.  Days where I don’t push and I don’t worry and I don’t force.  But then it’s right back to the pushing.  It’s not about me.  It’s about Finn.  And his future.  We have no idea what that will look like, but as parents of this precious miracle, it’s our job privilege to make sure he is ready.  So we push.  Day after day.  Month after month.  And, it’s totally worth it.  Even on my worst days, my most dramatic whiny and selfish days, he is so very worth it.