Happy Everything {Birthday, Heartiversary & Christmas}

Happy 1st Heartiversary to our precious Piper Noelle!! We made it girl!! WE.MADE.IT

 

It was exactly year ago today this blurry picture was taken!! We walked behind Mr. and Mrs. Anesthesia as they wheeled Piper to the OR for her big 'my heart is silly and needs to be fixed' surgery!! Side note: She cried the whole way from the NICU to surgery Level A!! Imagine that circus - tears, hysterical tears and then some more tears!! And then more tears!! Piper girl and I, we were made for each other!!

 

Praise God from whom all BLESSINGS flow!!  

The road has been bumpy, and not without its challenges - but when is parenthood peppermints and puppy paws? NEVER, my friends!! NEVER!!

 

We celebrated Master P's {FIRST BIRTHDAY} exactly a week ago!

We had quite the celebration...

And she quite enjoyed every moment...

 

Here is Piper that morning, excited about her celebration to come!

Let it be said, I was crafty before Pinterest...

but yes, this {1} picture idea did come from Pinterest!!  

 

 

 Piper was blessed with gifts in abundance and cards with messages that would make any mama cry!!

 

 

Piper is crying in cupcake picture número uno because I accidentally snapped her with her party hat. #momfail But please remember she has been through so much worse!

She inhaled the cupcake (duhh!) 

And then I nervously bit my nails until bedtime pondering the idea that she might not sleep all night from the sugar overload!! Thankfully she slept like the heart princess she is!!

 

 

We are so thankful for a birthday, heartiversary and a Christmas that is setting up to look VERY different from last years!! No offense Helen!!

 

 

Letting the prayers rise for Piper, her many heart baby friends and some friends that aren't exactly heart "babies" anymore!! Hello Kasi, Noah and Luke!!

Thanksgiving came early!!!

I briefly paused as we set out for our cardiology visit to {our beloved} Dr. Lee this morning!! My car no longer drives itself to the Helen DeVos Children's Hospital!! And for that I am grateful!! Thankfully our visit went better than this picture!! More on that photo shoot later!!

 

It's been 7 {long, yet short} months since we last saw the doctor that always refers to Bry and I as "Mr. & Mrs. Ooooosting" Emphasis always on the Ooooooo's!!

Here is Piper prior to her visit 7 months ago and now today!! 

 

 

The prayer list in relation to this visit was long... in our eyes... not God's!! 

Please Lord, let her heart be structurally sound. Let the leakage of her aortic valve and the narrowing be miracously improved!! 

Please Lord, let her sit still long enough for us to get clear echo pictures. She may look like her mama... But her busy is all Bryan!! 

Please Lord, let her not poop at her regularly scheduled times of 7:30 & 8:30am!! Overshare? Perhaps!! But as I've said all along... This blog is for P-Diddy and I think she should know we pounded the gates about poop!!

So back to the poop scoop --  poop would surely send me into hot flashes leading into our early morning appointment!! Ain't nobody got time to change a diaper when hearts are on the line!! And let's not even discuss me and smells in confined spaces!! 

And the visit went something like this...

 

 Shanda checked our...

 

{blood pressure} 80\31

 

{O2 level} 100%

 

{weight} 23# 9oz

 

{height} 31.25in

 

{EKG} Great 

 

 

 As you can see from this picture -- Piper considers herself to be quite the heart expert and therefore carefully watched that all the pads were being placed correctly!!

 

Next came our beloved!! Piper sat like such a little lady listening to what Dr. Lee was saying and even gave him the occasional "cheese faced smile." He was thrilled by her size and that she is walking and therefore making all the big developmental milestones.

 

Dr. Lee listened to her heart and said Piper does have a slight murmur, but that's almost expected in heart babes like herself. He was pleased with her EKG and said that he didn't feel an echo was even necessary today!! SAY WHAT?? I then told him I have been packing for this echo for weeks -- I have 12 toys and 12 pounds of Gerber puffs packed away in that stroller!! But as I've said all along -- If Dr. Lee is happy, then we are happy too!! Echo or not!!

Next visit in 6 months! Thank you Jesus!!

 

 

 So once again God has been so faithful to our little heart miracle!! And us!! This visit could not have gone any smoother!! And Piper even pooped before leaving home!! With no additional "surprises!!"

If you doubt the power of prayer you need to come and hear Piper's full story!! She has been one answer to prayer after another since we found out about her silly confused heart!!

 

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A year ago we had maternity pictures taken at this same sweet red barn.

I'll save you the mushy sentimental throwback -- I'll unload that on Bryan later - he L.O.V.E.S that stuff!!

A year ago was a much different time!! But that year defines us as a family and tells us that no matter what GOD HAS GOT US!!!

 

Thank you Anne Vruggink for capturing our family so beautifully!! Love you friend!!

www.annievphotography.com

 

 

{piper noelle} + {family}

 

 

 

 

 

Let the prayers rise for an uneventful 6 months until we see Dr. Lee again!!

And giving God the glory for everything good and perfect from today!!

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!!

 

*****

 

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!!

*****

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!!

 

*****

 

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!!

 

*****

 

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!!