Polar Vortex is putting it mildly...

We left the house Monday venturing out with our heart love child, not because we just HAD to get out, but because...

1) Piper had a photo shoot at Helen DeVos. She (we) were asked to be a part of a fundraising campaign for the congenital heart program. I wrote up a little ditty about our 33 day "Hotel Helen" experience, and they took pictures that will then go in a book for potential donors. We are hoping our Pippi helps raise millions of dollars for this amazing congenital heart program!! (Please let us know if you would like to donate that spare million you have lying around!!) 

2) Piper had another follow up to Dr. Lee. (Have I mentioned yet how much I love this man? I need to tell him at our next visit he is never allowed to retire!! That goes for you too Dr. Marcotte!! No retiring!!)

The visit was another answer to prayers. Everything looked really great, and we don't have to return till APRIL!! That feels like a million years away and we'll take it!!

Here are the heart highlights... 

1) Ding Ding... The rhino's coming in at 10.3 pounds. That's a full pound up from when we saw Dr. Lee 12 days ago!! Who told us these heart babies aren't good growers and eaters?? 

2) Oxygen level continues to trend at 100!!

3) Feisty pants got an echo... Thank you Lindsey for your patience!! We love you! You deserve a raise!! (Whose your boss?? We'll put in a good word for you and Season!!)  She wasn't the most cooperative (big surprise!) We regrouped, turned the lights down, and got her to fall asleep, and then got the imagines we needed. 

Dr. Lee was pleased with the echo. So much so that we get to discontinue her mitral valve twice daily medicine!! Hooray!! One med down... 4 to go!!! 

He mentioned some narrowing somewhere - but was quick to say he wasn't worried. 

4) First time heart mom had a couple of questions for the surgery team. As luck would have it Jess was in house and came to our question rescue!!  You know those people that you can tell love their job... Jess is one of them!! These babes are her passion. (She also deserves a raise!! A big raise!! If you want to mail that million right to her I'll make that happen!!)

We now have the ok to give Piper a real bath. Not the makeshift sponge bath on the living room floor we have been doing for 3 weeks. Hooray for 'full submersion' 'baptism style' baths now!!
Within the week we can also start lifting her like a "normal" baby - under the arms that is - instead of the neck and rear swoop.

A huge thank you to Nana Oosting who accompanied P and I on this adventure.  The journey home on Lake Michigan Drive was the WORST!! Cars weren't making it up the hills and the backup was massive! This winter will be memorable for so many reasons!!

And now for some fun... No, not "Where's Piper" -- but more installments of that are coming!
Piper is so fortunate to have 2 amazing photographers in her life. First was Ms. Dana - This was the day following her second home coming.  We were all a little sleep deprived... but Dana brought coffee and donuts!! It's amazing what coffee and donuts do for sleep depravation!

Here is a sample of her fabulous work...

We had to keep Bry happy.. so the hunting hat made an appearance.

This hat was a given to Pips in the NICU. There is a lady who lost her (premature) little angel (Rosie) and now makes these adorable hats for babes that find themselves on the third floor of HDCH. 

Thank you Jamie and Kim for this adorable hat!! We love!!

 

And our second photographer was cousin Lindsee.  Here is a preview of the session she had with Piper. (If you need pictures taken she's GREAT - you can find her on FB at Lindz Lenz Photography.)  

 

Doesn't that scar look AMAZING!? We were 6 weeks post op when this picture was taken. Baby skin is THE BEST!!

 

 

Let the

(Be safe on the roads, SPRING COME SOON, Piper continues to thrive at home)

Prayers Rise!!

 

 

 

2 Weeks home...

We have officially set a new record for consecutive days at home. Today marks 14 straight days at Casa Oosting for Piper Oosting!! Looking forward to the week where we go 7 straight days without a doctors visit. I don't see one of those in the near future... But that's par for the course with a heart baby!!

Monday we had our blood drawn (again) by Jen at Campustown!! This makes two Mondays in a row that she got Piper on the first poke!! We love Jen!!

No damage done... All packed up and ready to head home!!

Tuesday we paid a visit to Dr. Fogg - our infectious disease expert. Here we are in the waiting room (that really looks more like the play area at the mall.)

According to Dr. Fogg, Monday's labs looked great. We'll continue the antibiotic for another 10 days, and if labs are still looking good then no further visits or labs will be needed. Hallejullah. 

I've done the math and if I wrote a thank you note a day - I would finish up all Piper's thank you's by the time she graduated high school. This people is a really great problem to have!! I am NOT complaining!! At all - what so ever!!

Today the reinforcements came so I could write more than 1 thank you a day. Hollar... I actually did 57!! Go me!!

This would be Piper's Grandpa and Grandma Piper. For of those of you that didn't know this... Piper was my maiden name. (Gasp... There is a reason we picked this unusual name!) While my mom held P - my dad cleaned our whole house - I'm talking floors, dusted and the bathrooms. And while my dad had P - my mom did all our laundry!! Life doesn't get much better than this!!

Happy Wednesday Everyone!! Heart hugs from Piper Noelle!! 

Let the prayer's rise!!

Our Smurf: Piper Noelle

What Wednesday isn't complete without an impromptu visit to our favorite cardiologist!?

Here is Piper with Dr. Lee in the days before surgery. It was a total crap shoot who we got as a pediatric cardiologist. Whoever is the oncall doctor when you go into labor (with your heart baby) is who you get!! God totally had our back on this one -- because Dr. Lee has been a blessing from day one. 

Dr Lee always refers to Bry and I as Mr. and Mrs. Oosting. Cracks me up. Are we really that old? 

For the last day or two we noticed some bluing around her mouth when we'd feed and burb her. And when she screams her head off. This picture was the best I could get and still doesn't do it justice!!

To put it in math terms...

Smurf mouth + first time mom + heart baby = SOS call to the cardiology office to see if we can get in sooner than Monday!

I was told Dr. Lee wasn't in the office  - he's the hospital cardiologist this week, so there wasn't any available appointments. The nurse said she would put a note through to Dr. Lee and call me back. 

Less than 30 minutes later I was being given an option between a same afternoon appt or something Thursday morning. I took the 3pm same day slot and scurried to get both of us ready.

The nurse did an EKG, got her current oxygen level (100%) and weighed her. Piper is now coming in at 9# 3oz. (My little rhino!!)

Dr. Lee came in gracious as ever... We explained our fears - and he put fears to rest. He listened to her heart - said it sounded perfect, not to mention the EKG was completely normal, and 100% for an oxygen level is great!

I asked him what he charges for a visit like this and told him I'd pay 4x that - just for the reassurance of hearing him say "her heart is fine!"

He explained why perhaps we are noticing a blueish tint around her mouth - but after he said "her heart is fine" I tuned out and said my thank you prayers to God!! 

So moral of this story is... If you need an amazing pedatric cardiologist (which I pray you never do) Dr. Lee is fabelous and a perfect man for the job. Our transposition buddies Bennet and Charlie also see Dr. Lee and rave about him like we do!! 

Here is another (fun?) addition of "Where's Piper?"

The joy of your BFF (love you Jen!!) having a girl 4 months before you is getting her (still in style, looks brand new) hand me downs. Thank you Grace for growing like a weed so Piper can swoop in behind you and steal your clothes!! 

Get ready Renee and April... These clothes will be headed your way when we're done with them!! It's like the circle of life... But better, because it's girl clothes!!

Let the prayers rise!!

It Is Well With My Soul...

I'm nervous to say this... For fear it will change... But we have had an amazing transition home. First night was a little rocky, but the second night I called her bluff. I let her cry for more than 15 seconds and she settled down after 30. (Seconds, not minutes that is... I'm not Cruella DeVille.) Piper sleeps in the 'rock and play' next to our bed (Thank you Allison!!) and we use the Mama Roo (Thank you Grandparents!) during the day for fun activity time. We seem to have found something that works so we are sticking with it!! And today I Moby wrapped her to me. We both loved that experience... She got to be held and I got stuff done. It's amazing what you can accomplish with two hands. 

Piper went for a surgical follow up on Friday. 16 stitches were removed and she was good as gold!! She sat in Bry's lap and took a bottle, while Megan went to town on getting those bad boys out!!

We have come a long way 5 weeks. This was Pippi when we first got to see her after surgery... Bless her little (untransposed) heart!!

As it stands now we don't have to see them again unless we have trouble. So as much as we love them, we hope we return with thank you treats in the spring and not for something else EVER!! That's not to say we don't have numerous OTHER appointments on the books. We still do regular follow up with the cardiologist (Dr Lee) and infectious disease (Dr Fogg.) Not to mention weekly blood draws to make sure that pesky blood infection isn't coming back!! And then there's that great pediatrician (Dr Marcotte) of ours... Looking forward already to the 2 month visit in early Febuary. 

Here is sister pie all decked out and ready to head to that appointment. I've been waiting 5 weeks to dress this girl!! (Thank you Gordy and Candy!!)

(And she says "free at last, free at last!")

And a BIG thanks to Nana Oosting who came Friday morning to help me. I would have been disheveled and smelly had it not been for her holding Piper while I got showered and ready!!

We continue to be overwhelmed (in a good way) by the generosity of people who have followed our journey and sent gifts and notes of encouragement. We look forward to 'paying it forward' in the future, because we know first hand what a blessing it was to be blessed by others.

Let the prayers rise!!

Surprise Homecoming!!

Coming to you tonight from the floor of the Oosting home!!! Yes! Not the 7th floor of HDCH, but our actual Allendale home!!

Our prayers were answered this morning when the team came around and said things dried out enough to send Piper's biscuits home!! Hallelujah! 

We hold a special place in our heart for you Helen... But there was nothing sweeter than seeing this out of the rear view mirror.

We feel like a broken record... But THANK YOU to everyone who has helped us survive these last 5 weeks. We want to give credit to everyone, but the list is massively long!! (Example: Our mom's did our laundry and provided us with to-go meals, my dad took down our Christmas tree, neighbors dropped meals on our porch, people we don't even know sent messages of encouragement and prayed -- not to mention that our drive way was constantly plowed (thanks Kim and Ross - we know this weeks times was you!!) And then there's all the prayers said on our Piper's behalf!! THANK YOU!!

Let the prayers (of thanksgiving and praise to our mighty God) rise!!

 

Snuggled In On 7

No better, no worse was the over all consensus this morning in rounds!! They took a swab of the site and want to watch to see what it may grow over the next 48 hours. No one has talked about going home... But 48 hours from now would probably mean a Friday departure. And that would be best case scenario. 

Our wonderful cardiac NP (Jess) was by this afternoon in full on surgical gear. Bry joked Piper wouldn't recognize her with the "hair net" on. Piper has grown rather attached to Jess - or maybe it's us that's grown attached?!? I asked what they had today for surgery and she said it was another baby girl with transposition. And not only that, but they have 2 others also waiting for surgery with the same thing as Piper. I'm beginning to feel like it's a little more common than I previously thought. 4 babies in 6 weeks seems crazy when they tell you the odds are 1 in 4000. Please also pray for these families as you lift up Piper tonight!! The road ahead can be scary, but peace comes with each prayer said. 

Bry insisted I "sleep in" and come up later in the morning. (I do have the best husband EVER!!) I miss the nights of going to bed 8pm with not a care in the world!! Sleeping through the night seems like a million years ago.

I headed out refreshed and renewed late this morning. The snow was blinding and while attempting to back out of the drive way I got stuck. I should have paid more attention to the mound that had accumulated after the plow came through - but I was on a mission, and thought my Jeep could easily make it over!! (Don't the commercials show Jeeps going over mountains -- I have been very mislead!!) I guess I mistook my Jeeps ability for that of a Hummer. Fortunately for me, 3 of the neighbor men took pity on me and helped shovel me out!! Once again snow angels have come to my rescue!! Thank you gentlemen!! When I have time (ha!) baked goods will be coming your way!! Promise!! Even if they are bought at Costo and repackaged to look like homemade.

Thanks Pastor Harold for visiting today. We have your scarf safe and sound - we will not use it as a burp cloth for Piper - even if we do get desperate. 

Let the (dry out) prayers (continue to) rise!!

Delay Extended...

Apparently when you have a festering incision following a massive infection, they do afternoon rounds on you too. 

I had just laid down on the cozy (insert scarcam) pull out couch, when I heard Bry say "well hello." I thought he was talking to the nurse, so I paid no attention. Then I heard that undeniable English accent (Dr Haw) and bolted up. 

The whole team assembled bedside to look at the incision. Haw agreed with Hillman --  it was more "oozie" than he would like. Then the words "48 additional hours of observation" came out of his mouth. He said he doesn't want what happened the first time to happen again -- so he's not going to be in a rush to send us home. I didn't cry this time, so that was an improvement over morning rounds. 

We have also moved floors. Good Bye 8, Hello 7. Dr Haw said 8 is having a high volume of illness related admissions (pneumonia, RSV) and that it would be safer for her on 7. The last thing they want is for her to get sick!! 

We're happy about the following things from today.. and trying to focus on these. 

1) Piper received the synagis shot. This helps prevent RSV during peak season (i.e NOW!!) We've wanted this for weeks, but insurance can be such a bear. She took it like a champ. If you can have open heart surgery at 7 days old, you can get a shot at 35 days old. 

Thanks to Leslie for going easy on Piper!! We love you!! I swooped in after it was all done with a yummy bottle - I can do no wrong in her (big blue) eyes. 

2) The bruising that Dr. Hillman was worried about this morning, was COMPLETELY gone when he came around this afternoon to look at it!! It's no fluke - It's the prayers of the people and the healing power of our mighty God!!

3) Leaving 8 meant leaving behind the trusted Mama Roo. Thankfully Madison came to the rescue and wrangled us up another one!! And she even said she would be back tomorrow night to snuggle!! (The NICU needed her tonight!) Girlfriend likes her snuggles so this makes Piper and Mommy happy. 

4) I'm thankful for my Godly, Christian husband. Bry forgot his phone at home today, so for the first time he read one of my blog posts. (Normally, he would be playing "quiz it" or "flick kick field goal" instead of paying attention to me blogging!) He reminded that it's probably not showing the light of Christ by using colorful language on the blog -- no matter how sad, mad, angry, broken, tearful, weary or distraught I am.  

5) Our driveway snow angel has struck again!! Thank you again to whoever took the time to remove that massive amount of snow. 

If you are out and about - please be careful on the roads. We don't want any additional loved ones under the spectrum health roof!! 

Let the (Mommy doesn't have a mental breakdown, Pippi's incision dries out, everyone stays safe out there) prayers rise!!!

Delayed Homecoming

Bryan tells me our church congregation clapped when it was announced that Piper would be coming home today!! Just the thought made me cry!! 

I packed up most everything in our room last night. At home, it took me longer than it should to pick out her 2nd homecoming outfit. This morning I was awake before the alarm - it was like that "first day of school" excitement all over again!! I woke Bry up saying "Pippi's coming home today, Pippi's coming home today!!" I hear the roads are horrible - but we hardly noticed - nothing would have kept us from getting here in order to get her home!!

You may see where this headed, and it's not with us on Lake Michigan Drive with her in tow!! 

Dr. Hillman mentioned yesterday that the bottom of her incision looked a little too wet for his liking. He lightly rebandaged the incision, and said he'd look at it again tomorrow before discharge. Tomorrow is now today, and it hasn't changed much in that time. In addition to being moist (yuck!) she also has some bruising around the incision that she didn't have yesterday. Dr Hillman said that doesn't indicate anything in particular - it's just another thing to watch. 

Piper doesn't realize she was suppose to go home today and is being held over - but Bry and I sure do!! What a devestating turn of events!! There was a moment this morning when I thought they might need to give me a tranquilizer and my own room. Dissapointment is a bitch!! 

In the big scheme of things what's another day or two? Our motto since the initial diagnosis in September has been "one day at a time." However -- when you've spent 32 of the last 37 days in the hospital it's a BIG deal!! 

Please pray that she "dries out" in the next 24 hours and that we can finally bring her cute buns home. 

This weekend I got annoyed with the fact that I haven't been able to dress her in 2+ weeks (no one likes the hospital issued gown or swaddle blanket 24/7) so I took matters into my own hands and decided to accessorize. Daddy doesn't love the bows, but tolerates them for Mommy's sake. 

Let the (moisture and bruising be gone, get out of here before we go crazy) prayers rise!!!

Birthday Wishes for Bennet

Dear Bennet,

I wanted to come to your John Deere 1st Birthday Party, but Dr Haw and Dr Hillman wouldn't let me!! Maybe next year!! You remember how it is here... All hooked up and no where to go!! So Happy Birthday to my transposition buddy and future husband!! (My mommy says you're on the short list of acceptable future mates for me!!)

Wish I could have had some of that yummy looking green cake instead of crummy milk today!!

Heart Hugs from Helen DeVos tonight!!

Love,

Piper Noelle Oosting

P.S. My daddy says to tell your mommy "Go Blue!" 

Progress!!

Mission accomplished today!! What brought us into the ER two weeks ago was wrapped up today in the OR. (No, we are not quite home with Piper yet!!)

Dr. Hillman removed the wound vac and closed up the incision. He said he was pleased with how things looked. When your cardio thoracic surgeon is happy... You're happy!!

The infectous disease team came around this morning. We have their blessing to head home on Monday -- assuming things look good with the incision and labs between now and then. Once the IV antibiotics are done, 4 weeks of oral antibiotics will begin -- just for safe measure. (Pray people, PRAY!!)

Pictured below is our favorite resident. 

Dr. S has been SO SO amazing with Piper. She had her PICU rotation when Piper was here the first time for heart surgery. She joked with us at the end of our first stay that her next rotation was infectious disease and she didn't want to see us there. Haha. Jokes on us!! Dr. S said she couldn't believe it when Piper's name was on her list of kiddos to round on this week. It's always nice to see a familiar face... Even if it is on these terms. I'm pretty sure I cried telling her how much we've appreciated her these last 4 weeks. Also pictured is Dr. Fogg of the infectous disease team at HDCH. He's really great too!!

FYI -- We're also now Greek Orthodox... Let me explain. Dr. S let us know that even though Piper got jipped out of the December 25th Christmas -- that the Greek Orthodox Christmas goes through January 6th -- which is the day we plan to depart. So we are doing like the Greeks and celebrating on the 6th!! And boy does sister have a lot of gifts to open. (Ever since watching My Big Fat Greek Wedding I've always wanted to be Greek, so this works out great for me too!! Ooy!)

Found this little gem online and had to share it... 

And here is that miracle getting some last minute snuggles before surgery today... God is so good and despite some dark valleys along the way he has always made his light known to us. 

Let the (go home on Monday, infection never comes back, incision heals nicely) prayers rise!!

Happy 2014!!

If you had told me a year ago we'd be spending New Years in the hospital -- with our four week old daughter -- three weeks post open heart surgery -- I would have said you're C.R.A.Z.Y!!!!

2014 has started off on the right foot!!

1) There had been some thyroid concerns in the days following the betadine flush (something they said could happen.) I guess betadine angers the endocrine system?? Labs this morning showed normal thyroid function and for that we are grateful. 

2) The wound vac dressing was changed (again) today and according to Dr Hillman everything looked really great. He's planning on a complete vac removal and closure of the incision on Friday. While she was still doppy from the sedation meds, I gave her a mini bath. I wish they'd send us home will some of that miraculous cocktail - she didn't fight me a bit!! (It may or may not be the stuff that Michael Jackson overdosed on!!)

3) We're not getting our hopes up... But there was talk of us getting to go home on Monday (01.06.14!!) Pray hard people!! We love our Helen away from home family... But we've had enough. 

4) The grandparents surprised us with a Mama Roo - I'm told it's all put together and just waiting for Piper's buns to come home!! I'm sensing our second home coming going a lot smoother than the first!! The lack of raging infection surging through Piper's little bod may play a large roll in that as well!!

Here's a new game... It's no longer Where's Waldo... But Where's Piper??

This coming from the hospital that made US watch the safe sleep video. The nurses all say "we can only get away with this because she's hooked to so many monitors!" OR "do as I say not as I do!"

Happy 2014 to all of Piper's prayer warriors!! We love you all and are forever grateful!!

Let the prayers rise!!