Come a Long Way

Last week was a typical roller coaster in the Finn world.  We are enjoying the ride, though.  I have always loved learning, and this is a season of much growth in that area!  We had appointments with 3 of his specialists last week: the audiologist at Hearts for Hearing, the newest addition to his care team – the Pediatric Gastroenterologist at OU Children’s Physicians and the Pediatric Endocrinologist at OU Children’s Physicians.  We were lucky to get the last 2 scheduled back to back, since they were in the same building!

I have to take a moment to remark on OU Children’s.  You know us, we bleed orange!  When Finn was in the Hospital side of OU Children’s a couple of years ago for 8 days with RSV, we made sure to wear a spot of orange every day!  I remember my dad had a rough time coming to the campus to see his grandbaby because of all the crimson and the signage.  But, I have to brag on them.  REMARKABLE.  Best hospital and clinic experiences I have ever had.  I remember feeling that way during that stay, but our new encounters have reinforced this.  We are completely blown away by the level of care, the compassion and the service at this hospital!  Every time we have seen our Endo and this time with the GI each physician has spent 30+ minutes with our family addressing all of our concerns.  It’s so comforting.

On Tuesday, we made our way to Oklahoma City to see Miss Sara at Hearts for Hearing.  She has been seeing Finn since he was 6 months old.  In that time, he has never completely passed all the parts of the hearing test.  He has had lots of Sooner Start interventions, visits with the Ear, Nose, and Throat doctor including 2 sets of ear tubes, and still feel “behind” at the audiologist.  Last visit (4 months ago) was the best visit we had ever had, but he still fell short, and they wanted to hear more words from him.  Last week?  He blew them away!  He was in an excellent mood, did all their tests without any threenager drama, and PASSED THEM ALL with flying colors!  We were so impressed with how well he was doing, but we don’t know what they are looking for.  As we got close to the end of the testing we could tell the audiologist and the speech therapist were exchanging “knowing looks” but we were still surprised when they said we don’t need to come back unless we have problems!  He has graduated from their care!  So very exciting!  We will miss them, but sure are proud of our Miracle for passing this hurdle!

 

 

Then, on Wednesday, we headed down to the main campus of OU Children’s Hospital near downtown Oklahoma City.  We have been seeing our Endocrinologist at his satellite clinic at Mercy Hospital, so this was our first trip to the Physician’s building.  Again, so impressed!  Our first stop was on the 9^th floor with the Gastroenterologist.  He spent plenty of time with us learning about Finn and our family and out history.  He asked a ton of questions, and carefully listened to our answers.  He decided we are in a “wait and see” phase of Finn’s life.  He definitely needs to increase his weight, but he did not seem as concerned about it as we were a few weeks ago.  Finn had gained some weight since that last visit with the Endocrinologist, but he is still very underweight, and not staying on his growth curve.  So, after determining there is nothing medical presenting itself at this time, the plan is to fatten him up.  We got to meet with his nutritionist and she gave us some tips and pointers to get him gaining.  And a list of foods for him to eat.  Basically, anything high calorie and fattening.  All the things Britt and I have been fighting hard to avoid! LOL!  She encouraged us to slather everything Finn eats in butter or oil.  Dip everything in sauces.  And to supplement with calorie dense milk replacements. Our trip to the grocery store this weekend was interesting!  But, is adjusting to the change pretty well.  As a family, we have some bad habits to break (letting him graze is a no no!), but we will work on that after school gets out.  He is definitely eating more, and he loves his new fatty diet! LOL!  Another chore: keeping the 3 bigs out of “Finn’s Snacks!”

After our visit to the 9^th floor, we headed down to the 4^th floor to the Endocrinology clinic.  Today, we weren’t actually seeing the doctor, but his RN who would teach us how to inject the daily growth hormones with Finn.  We were escorted  a conference room where we were educated.  We learned about the drugs, about the process, and what to expect.  Finn had a bit of a meltdown while we were going through all of this, but it was very to him and he had already been a long morning!  We came to the clinic with a backpack full of supplies.  We had a large black backpack, a big blue cooler pack, a box with a special container for the pen, a box of alcohol swabs, a box of  tiny needles, a sharps container, and a box with the pre-filled pen full of hormones.  This came in two shipments late last week.  One box was bigger than Finn!  And we had no idea what to do with any of it!  But, we got excellent training!  She taught us about all the pieces, and we got to practice administering the shots on this special sponge.  Finn loved helping us and counting to seven as we held the pen while the medicine was administered.  The, we went across the hall to all wash our hands, and it was Finn’s turn!  He was having NOTHING of it! LOL!  But, we made it through that first short.    Not going to lie, that next night at home as we did it on our own, we were a bit nervous.  We talked each other through it, and made it work! One down!  We did it!  WHEW

 

Here we are several nights later.  While he doesn’t like it, he is doing OK.  We made ourselves an injection site chart so we can keep rotating the place where we inject him.  We have a system for storage of all our goodies.  And we have a set time and location to do this.  Last night was definitely the worst night.  I don’t know why it seemed to hurt more, but it did.  Overall, we are very proud of him.  He likes to help us get everything prepared, and even through the tears he counts to seven with us!  And after it’s all over, he gets to push the easy button.  We have the first few nights down – and about 4,000 more to go!  If the therapy works, he will have to continue it through puberty.  Seems daunting, but I know it will be worth it.

I also have to mention how GREAT his siblings are being about this!  Every night, it has been a family affair.  We all wash our hands, we all sit together and each person has a role in preparing and administering the shots.  Britt has the hard job – holding the Finnster still! The big kids help get the supplies together, throw away the trash, and put the needle (it has a cover!) in the sharps container and bring over the Easy Button for Finn to push.  They help us encourage Finn and help comfort him, too.  This is a HUGE change for all of us, but we are in it together!

Thank you for your continued prayers and support.  Our insurance has denied the coverage for the injections, but there are several appeals steps to go through.  In the meantime, we will continue the injections, and if the insurance choses to never support this therapy, there are foundations that will help cover the cost.  For now, we are living on faith that they will see how beneficial this therapy is for Finn and acknowledge his diagnosis of SGA and Short Stature.  We ask for prayers of provision for that process, then of course for our family as we continue this journey.

Stretching and Growing

Where have the last 4 months gone?  This family of six has been moving along at break neck speed – as usual.  And while some days it is all a bit of a blur, we wouldn’t have it any other way!  We love it! We are blessed to have the life we live, and each of our children is a gift.  We love being able to do things for them and with them.  We are all learning and growing every day!  The main point of today’s entry is to update Finn’s health status.  But I would be remiss if I didn’t recap the big events in the last few months…

JAKE:  Jake turned 8 at the end of January.  In the chaos, we weren’t able to have his birthday party until a few weeks after the actual day, but he had a GREAT time with his buddies at Stillwater SpaceWalk – an indoor inflatables facility.  He played basketball with Upward (Go Commodores!) in the early part of the year, then we transitioned in spring to SASA baseball (I Ride With the Stampede!).  His baseball team just won the silver bracket of their first tournament of the year last weekend – what a trip!  We head out to another tournament this coming weekend, and have league games every week. He is loving second grade and is an excellent student!  He recently became a patient with our favorite orthodontist! We’ve got a bad habit to break… He can finally ride his 2 wheeled bike! At 8 years old, he stands 5 feet tall and weighs 100 pounds – definitely the biggest of all his friends.  He is our gentle giant.

Lara: Since that last ER visit, we have worked very hard to manage her asthma and allergies.  Her braces have really started to move her teeth and change the look of her face.  We are excited for the next year for her!  She has dance classes 2 nights a week, and truly loves it.  Her studio is awesome, she has great teachers, and wonderful dance friends.  Recital is coming up in a couple of weeks, so she is working extra hard to polish her dances!  We had pictures a couple of weeks ago and can’t wait to see it all up on stage soon!  Lara also spread her wings and tried out for junior high cheerleader.  Even though she didn’t make the team, we are so proud of her for stretching outside her comfort zone!  She is a very good student and she is sad to see middle school coming to an end.  You can find her either dancing through life or reading a book.

Emma: Emma is our studious student.  She has maintained straight A’s all year, and hates to miss school for any reason.  She also tried out for the track team this spring, but missed it by just a bit.  Even while she was sick, she jumped almost 11 feet in the long jump!  She also spent some time with the orthodontist, but we aren’t putting her braces on just yet.  Her newest hobby is rodeo.  Yes, we’ve got a cowgirl on our hands!  She has joined a Junior Ranch Rodeo Association team and is competing in their circuit this year.  She has had 2 events so far and is learning so much each time – even how to fall gracefully.  She loves her horses and everything cowgirl.

Twisters: They will be teenagers in 11 days. Both girls are adapting to their father living in town near us.  They definitely get to see him more, but sometimes it is a challenge to meet everyone’s expectations.  It’s definitely an adjustment!  After struggling with mono in February and March, both girls were in their middle school production of High School Musical Jr 2 in March.  They had a great time, and it was a WONDERFUL show.  It is an experience they won’t ever forget!  Just this past Friday night, we celebrated their 13^th birthday (early since this is such a busy time of year) with a formal dinner and charm school event at their Aunt Paula’s house.  It was an EXCELLENT event and while they learned some etiquette, they made amazing memories.  Be looking for more on that soon… I can't believe they are off to the junior high school soon!

Britt & Betsey: Busy as ever!  Britt recently got a new “office” and new responsibilities at his day job with student health services.  He still does all his original tasks, but now has some new ones, too.  And he no longer has to sit at the front window.  Betsey is still working ¾ time with dining services, doing all things digital.  Getting home at 2:30 in the afternoons sure is good for the soul when meeting all the kids as the come home!  But the best part of both our days is ********!  Not only have the products helped us lose over 130 pounds between us, given us more energy, and helped us feel GREAT, but working the business side has afforded us more financial freedom.  Orthodontists are expensive!  But the best part of our job is helping others!  We are so lucky that we get to help other people get healthy, and improve their finances, too.  Lives are being changed.  Ours, but most importantly our friend’s and family’s lives.  Since January we have earned the Silver leadership level, been invited to attend and were trained at the first ever Leadership U class, and attended Leadership School for the up and coming leaders in the company.  We are looking forward to Success School in August – and earning another pin level before we go!  There are so many people out there still looking for what we have.  We want to share it with them!

And sweet Finn.  He is so cute.  We hear it all the time.  But he is also stubborn, strong willed, defiant, a bit on the aggressive side, and needs anger management lessons.  He is the epitome of a “threenager.”  And while almost all of his “Preemie Problems” have been dealt with, we’re now dealing with a genetic issue – more on that in a bit.  So, over the last 4 months, we’ve seen his pediatrician several times, his lung doctor 3x, his eye doctor, the dentist (still not a fan, but we did better this time and she got to observe his severe under bite), his ENT, and his endocrinologist.  Next week we see the audiologist, his new specialist the gastroenterology doctor, and the endo doctor again.  WHEW!  Over all, he is very healthy.  We are still monitoring the ear tubes he got last year, and due to his ear issues he has still not completely passed the hearing panel yet.  Hopefully this week!  He is talking up a storm and has a huge vocabulary, so we’re not really worried about his hearing but want to keep his ears healthy! 

But his issues lie in his height and weight.  He is still way too tiny for his age, and especially his genetics.  Remember the 5 foot tall 8 year old I mentioned earlier?  His doctor thinks this is not preemie related.  So, after a year of observation from the endocrinologist, he has recommended growth hormones for Finn.  Based on his diagnosis of “Small for Gestational Age” (SGA) at birth – meaning even for a 26 week gestation micro preemie – he was smaller than average, his slow progress over the last 12 months, and his current location on the growth and weight charts, it is time for intervention.  This revelation has been a hard pill to swallow.  While there is no “medical” ramifications of small stature, the social and emotional consequences can take a toll.  And if we can help him avoid some of that, we feel we should.  But, that also brings us to another specialist.  While he grew 2 inches in 6 months, he lost 2 pounds.  The hormone therapy will help his bones and muscles grow, but he needs body fat.  So, the GI will run tests to make sure he is absorbing nutrients properly, and we will meet with a nutritionist as well.  He is a very picky eater, and he is a grazer. He eats small amounts of food – all day long! 

All that to say, we have lots to learn.  And my stubborn boy has lots of obstacles to overcome.  We go to the pediatric gastrointestinal doctor first thing Wednesday morning at OU Children’s Hospital.  This is our first visit with him, and we hope to get some answers and a plan of action from him.  Immediately following that appointment, we go back to his pediatric endocrinologist at OU Children’s to learn how to inject the growth hormone.  Fed Ex delivered it Friday.  So, here we go….. It’s all happening so fast…

Please pray for us.  For Finn – I have to hold him down to inject the meds; it takes 6 seconds to deliver the medication.  That’s a long time for a 3 year old getting a shot.  For Britt and I – it’s never easy to make the decisions, let alone carry out the treatments to get desired results.  For his siblings.  It seems there have been so many time over the last 4 years where the focus was so much on Finn.  I don’t want them to get lost in all this.  And for our business.  This treatment is not cheap.  God gave us this vehicle so we could care for our children.  It is now our job to steward it, and grow it, so we can keep our babies healthy and provided for.  And as always, for discernment.  God’s will be done.

Once Tiny, Always… TINY?

Here we are, a couple of weeks past Finn’s 3^rd 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 10^th 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 ******** 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.

Hits so close to home

Team Finn’s Fans grew by two feet today.  Unexpectedly.  And it makes my resolve to be a part of this amazing organization even stronger.  There’s a sweet baby girl 70 miles from her HOME getting settled into her temporary NICU home this evening.  She probably won’t be able to attend the March of Dimes Stillwater March for Babies this year, but we will.  And this year, we March not only for Finn, but for sweet little Lucy, too.

Let me tell you about them.  Momma is one of my dearest friends.  We share so many things in common.  We can finish each other sentences, talk without even speaking, laugh at nothing and know why, and pick up a conversation 2 days later without missing a beat. She is part of the Stillwater March for Babies Committee, and since she knew she would have a newborn at the time of the walk, she and her family joined Team Finn’s Fans to help us meet our fundraising goals! Her older daughter is almost 2, and Finn loves her.  In fact, this was our Transformation Tuesday picture today:

Baby Girl #2 was due the 2^nd week of September.  Scheduled C-section for September 8.  Until last week.  Thursday her doctor said she had high blood pressure and sent her to the local hospital.  Friday, due to pre-eclampsia, they transferred her by ambulance to the same hospital I had Finn at.  Yesterday they told her it was a waiting game.  This morning they told her it was BABY DAY!  What a ride!  Lucy was born at 4:07 this afternoon weighing 3 pounds 8 oz and 15.5 inches long. 

And it’s not fair.  NO ONE should have to go through the fear and questions they are going through right now – and what we did 3 years ago.  It’s scary.  It’s tough.  It’s life threatening.  It’s just not fair.  That’s why March of Dimes is so important to me and my family.  We want to see premature birth eradicated.  Figure out why it happens; figure out how to treat it; figure out how to prevent it.  Save the Mommas.  SAVE THE BABIES!

While she has a long row to hoe, Baby Lucy should do alright.  Girls fare better than boys in the NICU.  She has great support.  All the research from the last 76 years of March of Dimes are on her side.  She’s a fighter!  And she is LOVED.

Here’s how you can help Baby Lucy and other babies like her:

• Buy a Team Finn’s Fans T-shirt
• Join Team Finn’s Fans and raise money for the March of Dimes
• Donate to our team and help us meet our goal

We want all families to be blessed with big, full-term, healthy, take-me-home babies!  Don’t you? Join us!

Party of Six

How in the world has an entire month gone by without an update from the Dream Weavers?  Oh… Yeah… Six people make for a VERY busy life under one roof!  Let’s see…  Professional development classes for me, dance for Lara, basketball season came to an apex and (an undefeated) close for Jake, various family members went to the dentist, Britt and Betsey started Stillwater March for Babies committee meetings (mark your calendar for Saturday, September 20), Britt started working a night job at the print shop for Eskimo Joe’s Promotional Products Group, we attended an NBA Thunder game as a family, survived snow storms and snow days (which will have to be made up), Emma and Lara went to a middle school dance, various birthday parties and sleepovers for the big kids, signing Emma up for spring volleyball, Alpha Delta Pi meetings and events for me, Finn is two (and all that entails), and yesterday it was 78 degrees outside and tonight baseball practice starts for Jake.  WHEW!  What’d I miss?  LOTS I am sure.  I am so thankful for my fun, busy, crazy family; but it is kind of overwhelming to look back over a month and see all that has happened!

I feel like we are falling into a routine with the new work schedules.  It is still crazy for me to get out the door and be ta work by 7:30, but I am making it every day.  I sure like getting off at 2:00!  Gives me a minute to breathe!  To run errands, be creative and work on Dream Weaver Prints business, and to be there for my kids when they get home from school.  Even if I’m not armed and ready with gourmet snacks and fresh squeezed lemonade, I am THERE!  We do chores, laundry, watch TV, whatever until it’s time to start dinner.  Which is early!  With Britt working nights, he gets home from his day job about 5:15, and needs to leave for his night job at 5:40.  That’s 30 minutes to eat, change, and love on him!  So, we start dinner about 4:00 these days!  Emma and Lara are ESSENTIAL in this process!  They are either helping me prep food, or helping keep Finn out of the kitchen!  We have tried lots of fun recipes and have generally enjoyed working as a family to make sure Daddy has a good dinner before he takes off to work hard for our family.  It may not be what we ever wanted, but we are making the most of it!

As for Finn and what’s up in his unique little preemie world…  We decided a couple of weeks ago that he was not progressing as we wanted him too.  Yes, SoonerStart (early intervention) comes once a month or so to evaluate him, and they think he’s doing “fine,” but there are just so many things we WASN’T doing!  Like, I don’t know… EATING!  We had been told to encourage him, and to introduce new textures, and the list goes on.  Nothing was working.  And he was just too skinny in our opinions.  Add to that, he isolates himself at school and doesn’t participate, won’t talk to his teachers, and has some other peculiar social traits.  We decided it was time to get a professional opinion.  Off to the pediatrician we went!  We left there knowing he has not gained a single ounce in 4 months, but had grown taller, with a prescription for an appetite stimulant, a referral to an endocrinologist, and a referral to an occupational therapist.  And a smile on our faces 3 miles wide knowing we were getting help for our little man who we were tired of watching struggle.

We started the appetite stimulant last Tuesday morning.  He takes it twice a day with food.  So, we give it to him at 7:00am after his “breakfast” Pedia Sure and at 2:30-ish after his “afternoon snack” Pedia Sure.  The drug fact sheet stated that “you might notice an increased appetite after prolonged use.”  If by prolonged use, you mean one dose, then YES!  Yes, it does increase appetite!  He has been eating more food in the past week than he did in the past 6 months combined!  More volume, more variations, better foods (not just Goldfish crackers and pudding), more frequency!  His cute little belly just sticks out all the time now!  We are so happy it is working so well for him!  And the even bigger bonus, it has COMPLETELY changed his attitude and demeanor!  Finn has always been a sweet boy, but he was often grumpy and inconsolable, and hard to get him to participate in anything.  Now, he is happier, more involved and engaged, and sleeping better.  He’s also a bit more ornery, but we’ll take it!  In one short week, he has become a completely different child.  It makes us wonder if he was just hungry all along but didn’t know how to fix it.  Or his blood sugar levels were all over the place due to lack of nutrition…  Poor guy!  We’re just happy to see him doing SO MUCH better!

Today we start another adventure with him.  He has his first evaluation with an Occupational Therapist here in town.  We are hoping to help him learn the skills and confidence to do things more independently.  With Mommy, Daddy, 3 older siblings, and Nana the Wonder Sitter, it’s no wonder he doesn’t want to be self-sufficient!  We hope to just help him learn what he needs to be more in par with his peers.  And of course, a bit selfishly perhaps, we want him to be less clingy and needy.  We know part of that is being 2, but having raised 3 other 2 year olds, and knowing how incredible smart he is (sometime I’ll tell you about his puzzle skills), I know he is capable of so much more!  I just can’t wait to see him thrive! 

The break between updates will not be as long next time.  I hope the Occupational Therapy takes off like the appetite stimulant did, and we see fast results!  We’re still waiting on the referral for the endocrinologist, too.  My prayer is that in 6 months, we will look back on this and know we did the right thing and will be able to see marked improvement in our awesome preemie!  He has always been the kind that needed an extra push!  Always a fighter, our Finicky Finn!

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.