Thursday Thankfulness...

No, really... Piper is thankful for A LOT!! She just had a mini melt down before she reigned it in and we talked about our thankful hearts!! Our untransposed, thankful hearts!!

We are ohhh so thankful for a handful of amazing reports recently... So I figured why not make a "Top 5 of Thankfulness!!" 

 

 

5) The Synagis shot (that helps prevent RSV) was approved for administration this winter!! (November through April baby!!) She's the last person you want getting RVS... Well, maybe not THE LAST, but she's at least in the top 10!! Next to all her preemie buddies from the NICU!!

 

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4) Piper's blood was drawn... yet again!! It's getting to the point where she could probably draw her own!!

This latest round was to recheck her white blood cell count. Sister has been low for quite some time!!

Thank you Jesus that this time around her value had doubled!! It still puts her {just} outside of the normal range - but her pediatrician is happy - so mama is happy!!

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3) Piper had her nine month check up on 9/16/14 and she checked out beautifully!! Dr Marcotte said her heart sounds like that of a normal 9 month old!! No murmur heard WHAT.SO.EVER!! 

{The Stats}

Weight: 22# 14oz (95%)

Height: 30 1/2 in (>97%) 

We were told she is the size of an average 15-16 month old! Wow! There is no denying we grow em' big at our house!! 

 

She still has NO teeth... But he wasn't worried!! He thinks "anyday now!!" Which is comical, because we heard that at the 4 and 6 month check up as well!!  

Piper took her flu shot like a champ!! And wasn't any less happy in the day or two after!! But let's not talk about her daddy!! I'm pretty sure he did enough complaining for the both of them!!

I'm thankful for anything that doesn't throw off her sleep at night or make her crabby during the day!!

 

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2) Early On came and did an evaluation of Piper Pie last week. Diane said she is doing everything she should - plus some!!  We are making all our milestones so she's comfortable not coming back until the first of the year!!

 

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1) WE ARE ON THE BOOKS WITH DR LEE!!

 Technically we weren't suppose to go back until December. But I felt strongly that perhaps we should go in November prior to loading Piper with flu shots, Synagis shots, and her (four) 12 month vaccines. That's a lot of pokes, my friends!! If we have any chance of getting her to lay still for an echo - we need to do it before she is scared to death of anything doctor related!!

 

 

Let the prayers rise for continued good news and a great visit with Dr. Lee come mid November!!

 

 

 

 

 

 

 

 

 

 

A year in review...

From every wound there is a scar. 

From every scar there is a story. 

A story that says...

WE SURVIVED!!

 

I don't care that we took this picture 59 times and not ONCE was Piper smiling at the camera!! We survived and that's enough for me!! 

 

I could tell you what I was wearing 1 year ago and what I choked down for lunch that day (and have refused to eat since!!)

Today marks 1 year since we were told of Baby O's extra special heart!! 

 

Who would have thought 366 days ago that Piper's first words would be "Transposition of the Great Arteries!!??" Just kidding... But her first phrase is guaranteed to be "Jesus fixed my heart!!"

 
What a difference a year makes!! God is so good!! We have walked through the valley of the shadow of death - but our heads have been anointed with oil and our cup now overflows!! (Insert tears here!!)

 

God's perfect plan wasn't for his precious children to have heart defects - but when sin entered this world his plan dramatically changed. And until Christ comes again (Come Lord Jesus, Come!!) we are trying to turn something that initially brought SO much sorrow, into a story of hope!!

We never turn down an opportunity to raise awareness!! In February we were asked to be a part of a "book" Helen DeVos Children's Hospital was putting together for potential donors. The book recently arrived and is precious beyond words. It highlights Piper's story as well as that of four others. 

 

I recently waded through a kiddy pool's worth of explanation of benefits... something we've talked about doing since Piper was discharged (for the second time) on her Great Grandma Huizenga's birthday - January 8th, 2014!!
 

The whopping total for her 14 day NICU/PICU stay, arterial switch operation AND THEN the 19 day stay for her MSSA infection...

$400,761.34

Is it just me or is this face worth so much more than that? 

Piper received million dollar care... We wouldn't have batted an eye if the total was a mill and we were on the hook for EVERY.LAST.PENNY!! 

 

Side Note: The pipe addiction started early!! And who can blame her? There are 18 in her crib right now!! I'm not even joking... Come and count them!!

Piper continues to do awesome!! She crawls, climbs and smiles all the time. (Watch out Dr. Seuss... I'm coming for your job!!) 

We will see Dr Lee (her cardiologist) closer to her birthday. Until then we pray everyday that the valve leakage and narrowing are no longer an issue!! Letting the prayers rise that no additional surgeries will be necessary!! And that she will lay still long enough to get a good echo!! 

We again say THANK YOU to everyone who loved on us this last year!! We are truly blessed!! 

We wouldn't have made it through without our parents!! I dare say we have leaned on them more this last year than in the 30 years prior!! Thanks peeps!! We owe you!! Just for this we won't throw you in a home when you get old!! {wink, wink}

And my final thought and request is to PRAY HARD for all those that find themselves in the shoes we were in just 1 year ago!!

 

We have a "transpostion baby-to-be" on our radar right now!! Sweet Kaleb should be arriving {transposed heart and all} in mid October!! We know all too well what those last 6 weeks look like. Please join us in praying hard for peace, hope and success like Piper's for Kaleb!!

 

Let the prayers rise!!!

 

 

 

 

 

 

 

The days are long... but the years are short!! 6 months in and counting...

 

 

Happy Summer ya'll!!

 

Piper is dressed and ready! Isn't it a little funny how the top of her scar gives the appearance of cleavage? (Or maybe it's just me!!)

 

3 weeks ago we went back to the lab and paid a visit to our favorites - Jen and Julie. We were rechecking Piper's iron levels to see if she was yet within the normal range. The iron looked great, but her white count was low!! Boo!! Why is it always something?? Dr. Marcotte wasn't overly concerned. She was just getting over a cold, and he felt the weeks of antibiotics she was on this winter could have caused a temporary suppression to her white cells. It can take time for the system to bounce back after being aggressively treated like it was!! (Or so I'm told!!) We are going to recheck again in 6 weeks!! Let the prayers rise!!

 

Thanks ladies for another fabulous visit to Campustowne!! We really do love you like family!! Note: This was after Jen poked her and Julie held her down!! Girlfriend really doesn't hold a grudge!!

 

 

 

Next on our "Piper's Medical To-Do List" was having her ears and eyes checked at the Ottawa County Health Department. We were told babies with one "defect" can often have others - so it's best to be proactive!!

 

Sylvia couldn't have been sweeter! (Broken arm and all!!) Piper doesn't see a ton of new faces, so Sylvia was a treat!! And what a miracle worker to get both a vision and hearing screen on a 6 month old!!

 

 

Good news... P.Diddy can hear AND see!! I had little doubt - but the reassurance was nice!!

 

 

And our third adventure was Piper's 6 month check up on 06.10.14.

Happy to report she is growing like a weed - or based on her percentiles maybe I should say 'growing like a whole field of dandelions!!'

 

The following would be from our traditional "pre appointment" photo shoot!!

 

 

 

Weight:

19# (95th %)

Before you judge -- Her daddy was 25 pounds at 6 months!!

 

Height:

27 3\4in (97 %)

 

Head Circumference:

Let's just say her head looks bigger than it actually is because of her "lackage" of hair!! The "looks like her daddy" jokes never get old!!!

 

The visit went GREAT!! She does everything she should -- minus rolling from back to tummy!! And let's be honest - if Dr. Haw and Dr. Hillman cracked your chest open at 7 days old - you may be a little shy to purposefully flip onto your stomach too!! (Even 6 months later!!!)

 

There has been a recent baby boom at the office.  Drink the water if you dare!! Thankfully all 3 of us weren't out on maternity leave at the same time!!

 

Check out poor Dr. Marcotte surrounded by a whole lot of estrogen!! Did I mention we ALL had girls? Seriously, drink that water if you dare!!

Charlotte (3 weeks) Elin (2 months) Piper (6 months)

 

 

And the following pictures are for Piper someday - as she is the main reason I continue to blog. Feel free to skim the following 50!! Just kidding.

 

 

 

The pre-poke pep talk from Kendra!!

The pokes - for the greater good as I always say!!

I make daddy do the dirty work whenever possible!!

 

The post-poke pep talk from Ms Barbara!

 

Elin and Piper discussing how tough they are and how thankful they are that their moms choose to vaccinate!! (Like how I got that plug in there?!)

 

And finally -- Piper feeling the need to baptize Elin for a second time this week!! 

Sorry Pastor Tony -- this is no reflection on your service!!

Giving God the glory for another great visit!!  

Whatever may pass - and whatever lies before me - Let me be singing when the evening comes.

 

Praising God for more than "10,000 reasons" to be thankful today!!

 

Let the prayers rise for all the 1 in 110!! 

(And for P's likely still leaky aortic valve!!)

4 Months and Counting...

2 weeks ago we put real clothes on and paid another visit to our favorite pediatrician.
Bryan is CONVINCED that Piper is her happiest when in a sleeper and crabbiest when I dress her for reals.   I have nightmares of sending her to preschool in footed pajamas -- but we'll cross that bridge when the time comes. We have LOTS of other bridges to cross between now and then!!

We officially have a 4 month old that is the size of a 6 month old!! 

Weight: 15# 12oz (90th %)

Height: 26 inches (95th %)

Hard to believe she went from the 50th percentile in height and weight to the 90th+ in just 2 short months!! 

Grow Heart Baby, Grow!!

The office was really busy when we came and Piper did her best to help!!

Piper and Monkey waiting for (4) shots!! She received her last RSV shot for the season. I say this very quietly -- but she seems to have made it through her first winter with no illnesses!!

We got the blessing to begin rice cereal. After the initial confusion\tongue thrusting -- she now inhales the stuff!!

 We are anxiously awaiting Papa (Grandpa Oosting) to plant his garden so we can make yummy heart healthy baby food. Bring on the veggies Piper says!!


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Our next bit of encouraging news came from a visit with Early On last week.

 In case you're not familiar with Early On here is their mission statement... 

Early On Michigan offers early intervention services for infants and toddlers, birth to three years of age, with developmental delay(s) and/or disabilities, and their families.
Research has shown that by addressing delays early on - especially between birth and age 3 - we can more effectively impact a child's development, even into adulthood.

Diane had nothing but positive things to report on Piper. She tested ABOVE her age in all areas except for one where she tested AT her chronological age.
 What a relief and answer to prayers -- I often worry what her morning on the heart\lung machine did to her brain long term!!

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Our last bit of Piper news comes from our follow up to Dr. Lee (the cardiologist) yesterday. She couldn't have been better behaved!! And the over all visit was (mostly) encouraging!!

Note: Why wouldn't we wear our cutest heart outfit to the best heart doctor in town?!? Thanks Meerman's for the pink heart ensemble!! Mama and Pippi likey!!

Katie did an EKG to start. Piper watched her like a hawk, but didn't move a muscle!!

Despite what these pictures make it seem... We do not shave P's head!! She does have hair!! 

Next was the echo with Mr. Jordan!! 

It was nice seeing a familiar face. He had scanned Piper during our stay in the hospital!!

She once again watched carefully, but didn't put up a fight!! Jordan made cool noises and that was enough to keep her attention!!

While waiting for Dr. Lee to come back in, she nervously chewed her monkey and then quickly fell asleep.

Dr Lee said with her shirt on there is NO WAY anyone could tell she's a heart baby!! She's obviously gaining weight beautifully!! (Haha!!) Her color is great and she behaves like a normal 4/5 month old!!

Dr. Lee was pleased with the echo -- but it did show some mild aortic valve leakage!! Leakage is obviously never a good thing... Whether it be your car, bladder, or air conditioner... Leakage = Bad!!

Dr. Lee was incredibly reassuring though. He said it's almost expected in these heart babies. It's not something he's concerned about (at this point) and he doesn't want to see us again till after she turns ONE!! Like 365 days old people!! SEVEN WHOLE MONTHS FROM NOW!!

I asked if there was a medication she could take to curtail the leakage -- That was a big fat NO!! He said if there was a medication that it would put our beloved heart surgeon, Dr. Haw out of business. 

So for the next 222 days (Yes, I counted!) I will be praying for my sweet hunny child's aortic valve!!

Giving God the Glory for three great reports on our Piper Noelle. 

In other news...

Piper welcomed cousin Brayden Ross into this world on Thursday!! 

He's cute as a button and most defiantly a keeper!!

Congrats Dan and Amy!!

We've started venturing the neighborhood!!It has been an incredibly long winter - so I welcome the warm, muggy, sticky weather with open arms!!

I promise she is under there!!

Piper LOVES bath time - and Mommy and Daddy love it more because it really seems to tire her out before bed!! 

Attitude is abounding... But we'll take it!!

James 1:17 Every good and perfect gift is from above. 

Until next time...

Let the aortic valve prayers rise!!

 

Baptized!!

Sunday was a day of much celebration!! Thank you to everyone who came out to take part with us! The wounds of the last 6 months needed some closure and Sunday was it!! 

Side note: Bry wanted P baptized months ago and I wanted to do June (when all the "ick" has died down.) Please take note of our great marital compromising skills. March 30th!! Bam! If you're engaged to be married and need counseling CALL US!! 

We have kept Piper on "lock down" since leaving the hospital -- I feared how she would take being exposed to the masses. (She's seen the girls at the lab more times than her Great Grandma's.) Turns out she's a people person!! Gee, wonder who she gets that from?? 

She was THE BEST little girl in church. She sat quietly in her carrier until it was her time to shine!! 

I wish everyone could have worshiped with us on Sunday!! I was not nearly the hot mess I thought I would be!! Thank you Jesus!! 

There was a super touching moment after the service. Our drummer came up to us and handed me his drum sticks! He said he didn't know what Piper would do with them, but he felt God urging him to give them to her. On them Harold wrote "stick with Jesus Christ." (Insert tears here!!) We have been practicing!! 2nd CRC praise team here she comes!! 

The drum sticks weren't the only things she got for her special day!! I think she is the only 4 month old with a flock of chickens!! Yes, you read that right!! A flock of chickens!! Her Great Aunt Judy bought a flock of chickens for a poor village in her name!! Here she is with her flock of chickens notice!! So fun! So cool! So sweet!

Piper received SO many memorable things in honor of her officially joining the family of Christ!! Thank you everyone for the gifts and sweet cards of celebration!! Her friends the Cebelak's made a donation to the HDCH Congenital Heart Foundation!! Thanks friends for helping save other babies just like Pippi!!

And the triplet cousins were once again gathered!! Such a blessing to have so many littles!! Even if none of them look at the camera while trying to take their picture!!

We head to the cardiologist at the end of this month. This will be three months from our last visit. (An ETERNITY in heart years!!) Please pray that everything looks perfect and that she continues (despite her rocky start) to be a heart rock star!!

We have some other sweet little heart babes on our radar right now too!! Please join us as we pray for Amelia (her aorta,) Charly (pulmonary arteries,) and Easton (following OHS!!) Each situation is very different - but nonetheless heavy on our hearts right now!!

In Christ alone - my hope is found - firm through the fiercest drought and storm!!

Thank you for letting the heart baby prayers rise!!

YOU'RE INVITED!!!

You're Invited... To Piper's Baptism!! 

Sunday March 30th, 2014 we are baptizing Piper's Buns into the family of Christ!! She's already a member, but it's symbolic, and we're really excited about it!!

Come one, Come all...

If you prayed for our Piper Noelle once, twice or two thousand times... 

If you prayed silently to yourself for Piper, at the dinner table with your family or earnestly on your knees... 

If you cried with us or for us...

If curiosity is getting the best of you and you just need to see her live and in the flesh...

If you love (Costco) cake and are willing to travel to Allendale to get some...

If you feel like you've lived these last 6 months with us... 

If you have one of those special 1 in 100 too...

WE WELCOME YOU TO WORSHIP WITH US!!!

  The excitement and celebration will begin at 10 am 
2nd Allendale CRC
6950 Lake Michigan Drive
Allendale, MI 49401

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And...

For those of you wondering -- We are still doing beautifully!! She continues to thrive at home. We'll see the cardiologist and the pediatrician next month to make sure they agree with how we feel she's doing. 

And now a glimpse into our last couple of weeks...

Piper had visitors (cousins) all the way from GA!! It was so cute to see how smitten these boys were over this little girl!!

No, we did not drug her!! This is the look you get when you wake her from a nap to take her to the doctor to get the RSV shot!! She did remarkable!! 

Saturday night she met all of her GREAT Oosting Aunties for the first time!! Aunt Merri is prepping her for what lies ahead at Allendale Christian. We'd drive to Legacy for her... But it's a little far!!

And lastly, we spent today praying for Ms. Aubrey (and Mr. Tim) as she will go in for surgery tomorrow!! Piper hates it when we put ANYTHING over her head -- but when I put this shirt on she laughed and giggled!! I took it as a sign everything will go according to plan!! 

Letting the prayers rise tonight for a sweet sweet friend and her journey to be cancer free!! We love you Aubrey!!