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.  

Fun Finn Feats

The big girls are away at church camp for the week and so it is super quiet in our house.  We have lived in our home 2 months and just a couple of days ago hooked up the Wii so Jake is in a video game stupor.  That leaves Fun, Finicky FINN!  So, I thought I would share a few fun things about him from the past few days.

Finn has been a bit under the weather:

He is PITIFUL when he is sick:

But yet, he somehow manages to have a little fun and go 'round and 'round...

Finn LOVES to play with legos:

Finn got his second haircut (MUCH needed; MUCH improvement!):

Finn discovered the Wii in the basement (or at least the TV remote...):

Finn is doing GREAT going to sleep on his own - even with cars!

And when he is FINALLY feeling better, he likes to play "Head Games" with Mom and stare at Jake instead of eating his yogurt! 

And based on this post, he has a LOT of orange in his wardrobe.  Rightfully so!  All good aspiring Cowboys do!  So proud of how far he has come from the tiny miracle he started out as.  He may still be a munchkin (barely weighing more than 21 pounds), but he is OUR munchkin, and he has completely changed our world! 

Survival.

DreamWeaverPrints

I have been writing this post for 2 days.  I can’t seem to find the right words.  We have been in “survival mode” around here for a couple of weeks.  Mainly due to birthday/end of school/church/dance/t-ball/other activities, compounded by the fact that we are still not 100% settled in to the new digs, and just the day to day life of being a large family.  I really want to come out of survival mode.  I want the last few boxes unpacked (we're at the point where daily we don't miss the stuff that's not unpacked, but when you go to look for something specific - like envelopes - they're still packed).  I want the kids immersed in their summer.  I want Finn to go to bed on his own and sleep all night (another post all in itself), and I want the DVR at less than 60%.  But after this horrific week in Oklahoma, none of that matters.  At all.  We are so blessed – BEYOND MEASURE – by the fact that we have a home, warm beds, and all our comforts around us.  So many don’t.

The loss is unimaginable.  Not only of homes, businesses, cars, and physical “stuff,” but of lives, memories, dreams and plans.  Their entire lives turned upside down in a matter of moments.  Torn, literally, to shreds.  As I watched the news and weather coverage on Monday afternoon via the internet from my office 70 miles to the north, I knew this was a bad one.  One like we hadn’t seen in a long time.  We were pretty sure it wouldn’t come this far north, but soon after The Big One “roped out” after destroying Moore, I had Nana the Wonder Sitter go check the Big Dream Weaver kids out of school.  To get them home to our house where we have a basement.  Since apparently, underground was the one way to survive this atrocity.  Luckily, it never got much beyond rain here where we are.  

I was glued to the TV/internet for the next 24 hours.  I literally woke up the next morning in my bed with tears in my eyes.  Those poor families.  Entire neighborhoods.  Communities.  SCHOOLS! Wiped away as if they were tinker toys in a child’s playroom.  And it’s not just Moore on Monday.  But Carney, Shawnee and others on Sunday.  There are smaller communities on the front end of this monster from Monday like Newcastle.  SO MUCH DESTRUCTION for this crazy spring weather.  I know we are PROUD to be Oklahomans and we are STRONG and we rise together when times are tough.  We will pull up by our boot straps and REBUILD.  And I know, “This ain’t our first rodeo.”  But it still hurts.  Shakes us to the core.  Overwhelms the senses.

The out pouring of love and support on EVERY level has been outstanding.  There are so many relief items being donated that they are trying to find places to house it all.  They ask for 1,000 volunteers in a particular location to make something happen, and 2,000 show up.  The list of celebrity and large corporation donations grows hourly.  Local businesses are providing services such as funerals, food, reduced price or free rentals for housing.  EVERYONE is offering money, food, water, Gatorade, plastic bins, gloves, shovels, man power to get to the victims who need it most.  THIS is what it is to be Oklahoman.  This huge outpouring of love and comfort is why I am proud to be born and raised here.  In the homeland.  Where, even if your home is blown away by an EF5 tornado, you still call the land we belong to GRAND!

Here are a couple of things that have really touched me over the last few days that I wanted to share.  A video or two, a photo comparison, and some essays.  And a link to some free images you can use for your facebook/twitter/instagram/whatever to show your support and love for our great state.

Rally Moore Oklahoma- answers WHY we live here

(even if it is “Tornado Alley”)

  Blake Shelton and Miranda Lambert "Over You" - The Voice



Moore tornado: A personal note from Damon Lane
What was I thinking?

'This Will Probably Come to Define Us'

Interactive: Moore tornado before and after images

Dream Weaver Prints FREEBIES – images you can use and share.

WE ARE OKLAHOMA!
It takes more than wind to break our stride…

Found on Facebook

Mother's Day 2013

This is a day to honor mothers.  ALL mothers!  We come in so many shapes and sizes. Mother's of babies, toddlers, tweens, teens and adults.  Mothers of fur babies.  Mothers who are moms in their hearts but have empty arms - due to infertility, loss (at any age or stage), or a family situation beyond their control.  There was a time in my life where I never wanted kids.  A dark time where I couldn't have kids.  A time when the 2 I was blessed with at once would be the only ones I ever held.  And now, a time when I know babies will no longer be a part of my future - until I get to be a Nana in a long, LONG time from now.  This is the hardest job I have ever loved.  Happy Mother's day to ALL the moms out there.  The world turns because of YOU!



This video is so powerful.  I am so grateful for all the mothers and motherly infliuences in my life, and in my families' lives.  Blessed beyond measure.  And thankful that these crazy munchkins call me Mom and bring me breakfast in bed once a year!

One Way (Finn's Way)

Hard to believe it is March 5 – ALREADY!  And Finn is 17 months old.  WHAT?!?  But, February was a blur.  With him being sick, in the hospital, and a short month, it FLEW by.  So, yes, Finn is 17 months old.  He is standing on his own for 20-30 seconds, babbling up a storm, has 10 teeth (2 molars on the bottom!), eats everything he can (but yet we still have to supplement with PediaSure – he just doesn’t GAIN), and weighed in at 19 pounds 7 ounces – fully clothed with shoes (Tiny Toms! So cute!) – at the doctor yesterday.  He is a SUPER FAST crawler, and is in to EVERYTHING!  If you can’t find it, check the drawers and cabinets he has been opening – Nana found a missing toy that way, and I found a missing remote control!  (These items had been missing several WEEKS when they were finally found.)  He is still a complete joy and such a happy baby!  His shirt today says it ALL!    Even if the sheer number of doctor appointments has been a bit overwhelming these past few weeks! 

Finn - 17 months - MY WAY!

Britt and I were going through old pictures and videos on our phones over the weekend, and we watched a few videos from our time in the NICU at Mercy.  It still seems surreal – to both of us – that THAT was our lives for over 3 months, and that the tiny struggling baby in those films is OUR son.  It doesn’t seem real.  Or that it happened to us.  But, it was our Finn!  As strong and crazy as he is now, he started out so tiny and frail.  God’s work blows us away.  To HIM be the Glory!

In the meantime, Finn had his first evaluation with the pediatric pulmonologist (physician who specializes in treating diseases of the lungs) yesterday.  We were recommended to see one after our stay in the hospital, and this Doctor came HIGHLY recommended.  While we didn’t really learn much from the visit yesterday, we are glad we went.  They did a chest X-ray (I think this was probably the 20^th one he has had in 17 months), a full exam, and tried to do a sweat test.  This is a test where they stimulate muscles, then collect sweat to evaluate the chemical content in it.  Unfortunately after the (long) procedure, Finn didn’t sweat enough to test anything.  Traditionally, this test is used to check for Cystic Fibrosis, but we know Finn doesn’t have this disease.  So, we assume (no one told us) they do this test routinely just to see what the chemical make-up of the child’s sweat is.  I have another preemie mom friend whose son sees this same physician, and she said they did it with her son as well, and he does not have CF.  So, we were told there is residual evidence of the RSV in his lungs, and to come back in 6 weeks for a follow up and to attempt the sweat test again.  And for Finn to drink LOTS of water before he comes!

(CF sidebar: The girls' father does have CF.  He has a rarer mutation that only slightly effected his lungs, but the end result is what caused us to have to do IVF/ICSI to conceive Emma and Lara.  Before we went ahead with fertility treatments, I was tested to see if I was a carrier since he had the disease, and I am not.  (Both parents have to be carriers in order for the offspring to inherit the disease.)  Each girl has a 25% chance of being a carrier.)

TOMORROW, Finn gets his first HAIRCUT!  I’m sure I will cry.  My last baby’s first haircut.  WOW.  (Emma was over 2 before I cut hers (because she was bald before that), Lara was 11 months,  and Jake was 8 MONTHS at his first haircut!  He had SO MUCH hair!)  I can’t wait to share pictures!