Weekend Update...

The weekend went quickly with very little trouble for Piper. However, it seems like any day isn't complete without at least a little ruffle to our feathers. 

Saturday they ran tests on the fluid coming from the vac - no staph present, but there was white cells. This put a delay on the complete removal of the vac. Adios Saturday. Hello Monday!!

Sunday was quiet... Just a little excitement towards the 7pm shift change. (Which I'm sure is every nurses worst nightmare!!) I suspected the drain at the top of the incision had come loose. I could feel moisture around her neck (and not just normal baby neck sweat from being swaddled.) Her nurse assured me it was in place and resecured the drain with tape. (First time mom vindication is coming... Stay tuned!!)

Monday morning was suppose to bring with it a complete wound vac removal and closure of her incision. (YIPEE!!) But yet again white cells were found in the fluids taken from the vac. (BOO!!) We quickly switched from a morning in the OR, to another bedside vac dressing change.

The nurse practitioner this morning also questioned the drain. She thought perhaps it might be leaking!! Funny how twelve hours earlier I said the same thing... But Dr. Kelli got poo pooed!! (The drain got taken out since it wasn't serving a purpose anymore -- Hooray for one less tube and mommy being right.)

I'm told Dr Haw is in Denmark celebrating Christmas with his wife's side of the family. So it's his partner in crime, Dr. Hillman, taking care of us these days. (We love Dr Hillman - great personality and explains things in terms we understand!! We're also not afraid to ask him questions either.)

Dr. Hillman now hopes to remove the vac and close her up later this week. He did mention that some kids go home with a vac... So that's a possibility if these white cells don't makes themselves scarce between now and the end of the week. 

Our prayer is that all will come back clear and the closure can be made. If they rely on the vac to close the wound (i.e. we go home with it) instead of closing it surgically, her scar won't heal quite as nicely. I'm reminded often that scars are cool, (thank you Renee!!) but can't help but want minimal battle wounds from this 4 week cardiac adventure. 

Our night nurse Mike offered me $16.00 cash this morning. Why you may ask? Apparently, it was decided last night that all of Piper's night nurses (that's 14 nights worth of nurses) are going to chip in and buy us a Mama Roo. What is a Mama Roo? Answer: The only thing that Pipilicious is even remotely interested in sleeping in. I'm told she did (2) 2.5 hour stretches two nights in a row. Otherwise homegirl insists (via unending screams) to be held all night. 

I wouldn't have believe she liked the Mama Roo, but I've walked in two mornings in a row to this...

Thank You Jesus -- Sing Hallejullah -- and you better believe the Mama Roo is on order!! It will be worth quadrupole the price we pay if we get 2.5 hours of interrupted sleep at home. 

This is Bry giving Piper a pep talk before her vac change. She was starving and on the verge of a meltdown!! 

Let the (white cells be gone, infection be gone forever, scar not look so bad) prayers rise. 

We should have named her diva...

TGIF!! Although all the days run together when you're in the hospital... So Friday's aren't really all that great. But TGIF none the less!!

I rolled into Piper's room this morning to find the wonderful tech holding and loving on Pipes. No sooner had I put my bag down and the gal said "you sure have a diva on your hands!" Translation: Someone had to hold her the whole night or she would SCREAM!! This is exactly what we experienced at home -- so I was actually comforted by what she said and not distraught. 

Morning rounds were again favorable for Piper. White count and platelets are doing what they should. 

The plan is to change the wound vac dressing (bedside) tomorrow and do a complete wound vac removal on Monday (in the OR.) 

A culture was done on the fluid that flows through the drains and it came back staph free - but there were white cells. Knowing that, Dr. Haw wants to run the saline through for another day. There was talk of removing it completely if today's culture came back clean and clear... Perhaps tomorrow!?

We had a surprise visit from one of our favorite NICU nurses... Thanks Ms. Marsha for coming back to see us!!

That's all she wrote for today...

Nighty night from little girl in the big girl bed!!

Let the prayers rise!!

  

White Count Warrior!!

The biggest travesty of the day was the delay in getting Pipe's wound vac changed. She couldn't eat after 3am because they planned on getting to business by mid to late morning. Imagine my annoyance when nothing had gone down by 2:45pm. Girlfriend could have had 2 more feedings if they had just planned better. Poor Pippi!! She did great despite the empty tummy -- only cried when we changed her diaper!!

This is the look of a child whose thinking "Mama, why aren't you feeding me??"

Adding insult to injury is that Dr Haw keeps referring to Piper as a "he." Seriously... I don't know many Piper's... But the ones I do know are ALL girls. Get with the program buddy!! (I'm cutting him some slack because he did save my babies life!! Perhaps in the United Kingdom Piper is a boy name??)

We had great news abounding today. Thank you to all those that prayed we'd have good reports and a better day than the last few!!

1) Piper's white count is back within the normal range!! 

2) The echo done this morning looked great. The infection is NOT in her heart!! Thank you Lindsey for leaving this mama a love note on the white board!

3) The vac change was done bedside - and Haw was pleased with her progress. 

He reported good capillary growth which is a sign the infection is clearing and new skin/tissue growth is sprouting. 

4) We have switched a day or two early from the betadine drain flush to saline. Because Haw liked what he saw we're progressing quicker than he initially thought. (This doesn't get us out of the hospital any quicker -- incase that thought crossed your mind. I asked. It doesn't.)

5) This is the first day I haven't cried. AT ALL WHAT SO EVER!! Thanks for those who have prayed for my mental state!! 

6) Piper has a blood culture drawn every morning. We have now had 4 negative mornings in a row. Thank you Lord for antibiotics!! And for answered prayers!!

7) Piper's kind of hot stuff on the 8th floor!! We walked in this morning and got stopped by one of our favorite Dr's. Then processed to chat with 3 of Piper's favorite nurses (We love you Vanessa, Leslie and Megan!!) By the time we rolled into room 817 our actual nurse for the day blurted out "so everybody knows my patient today but me!!" Deb quickly got to know Piper, but it was nice walking in this morning to people that feel like an extension of your family. And who truly care about you and your child!!

Thanks to all those that have gone out of their way to support us these last couple of weeks. The holidays are an exceptionally busy time, but know that everyone's generosity had not gone unnoticed or unappreciated. 

Letting the prayers rise (for another great day!!)

Happy Helen DeVos Christmas

We rolled in this morning to this... 

In addition to the adorable Christmas bear, there was also the book "The Polar Express." Not sure where or who they came from, but a very nice gesture for babes spending their Christmas in the hospital. 

We were thrilled that over night she came off the ventilator smoothly and began feeding again like Michael Phelps in training for the Olympics. 

Dr Haw came through on rounds (Seriously, does the man not even get Christmas off??) Topics of discussion included her elevated white count (what everyone believes is a result of him stirring things up in surgery yesterday) and how the infection is in her bone. 

The white count they will watch, but the infectious disease doctor feels strongly about adding in an additional IV antibiotic. The kicker is that it often causes horrendous stomach issues.  I told her we could handle a little diarrhea "for the greater good," but she said it's more of an issue of vomiting. The hiccups are still a sore subject for Piper - so I can only imagine how puking will feel on a healing, yet infected sternum. Stay tuned for more updates on that!!

Bryan and I both agree that she is more wired and tubed now than she was in the days following heart surgery. She has all the heart monitors, the wound vac, a pic line, a drain in the top and bottom of her incision. (They run a betadine flush through the top drain to the bottom in the hopes it will flush out the bone infection.)

This too shall pass I keep trying to tell myself!!

Just because Pippi was in Hotel Helen didn't mean that she missed out on Christmas fun. We once again read Luke 2 (that was good for her mama too who hasn't been to church in weeks!!) and she got gifts from her beloved family. 

Here is the latest additions to her wardrobe. 

Thanks Nana and Sara!! Nurse and "Auntie/Cousin" Sara was working today so popped in to check on her favorite peds patient. She said since Piper got jipped out of a 'first Christmas outfit' she wanted to buy her an outfit for the next major holiday -- Valentine's Day!! Be Mine -- and that she will be!!!

Mommy also got this really special necklace... Thanks to Piper's Nana and Grandpa for that treasure. 

We failed to send out Christmas cards this year -- which normally I LOVE doing... So... Here is the Oosting make shift Christmas card from today... 

And Piper says "Merry Christmas to all, and to all a good night!!!

Let The Prayers Rise!!

Do not pass go... Do not collect $200.00

Piper had her wound vac changed and pic line installed at 10:30am. If only it had been that simple!!

We should have known by how long it was taking that something was wrong... But you cling to your faith, and pray hard that you are overreacting. 

Dr Haw said it didn't look how he'd hoped it would when he opened her back up. There was still festering infection and necrotizing something. (I really didn't hear much after he said "it's not what I wanted to see today!") Well Dr Haw... This isn't what I wanted to hear today!! Merry Christmas to the Oosting's!!

We have migrated a floor up -- back to the PICU. We loved the nurses, but don't love that we are requiring that increased level of care. 

For starting out as a transposition rock star -- I'm devastated that we are now crashing and burning.

The minimum 14 day time clock for our stay here starts over again due to today's developments. Adios 01.04.14... Hello 01.07.14. 

I'm finding it increasingly difficult to be happy. Anger, bitterness and resentment have settled in. I'm praying constantly for the 2nd coming of Jesus, so Piper can no longer be in pain. 

On a more cheerful note -- Merry Christmas to all Piper's prayer warriors. We are so grateful for everyone that has lifted our Pipes up to "the great physician." We joked this morning that she had a striking resemblance to the baby Jesus. This is a picture of her all bundled up and ready for surgery. Ironically, this morning I did read her the Christmas story from Luke 2. 

Letting the (infection healing - able to go home healthy) prayers rise!!

Just another Monday at HDCH!!

Let's start with the positives...

1) The infection in Piper's incision and blood stream is NOT MRSA, but rather staph. Staph is the most common cause of these types of infections... We all have staph on the surface of our skin, but when it gets in and makes house -- that's when it becomes a problem. 

2) Because we know it's staph, they've been able able to cut 2 of the antibiotics she was on. One of the antibiotics can cause kidney issues in little babes, so I was relieved when they said that was being discontinued. 

3) The incision is looking amazingly better!! I can't believe how the wound vac and the antibiotic has cleared things up in just 2 days. However, this doesn't mean that we will be getting out of here any sooner... But it does mean that Punky isn't nearly as miserable. 

4) We have once again been blessed with the most kind, compassionate, caring nurses. In our 17 days here I can only say we've had one nurse that Piper and I weren't very fond of. 

And now for the low points from our Monday... The day started out really shitty and I mean shitty!!  (Sorry mom!!)

1) The IV line in her hand came out just 5 minutes after I arrived!! It then took 3 seperate pokes to successfully get it back in. The location of last resort was her head (yet again!!) See picture below. 

Bry is not strangling her... Do not call CPS. This is how we were told to burp our fragile princess. 

2) Piper needed labs drawn this morning as well. I warned the gal she's a hard poke. (Her veins roll and disappear.) In the ER they attempted and failed... The NICU girls (thank you neighbor Jen!!) ended up coming down and getting what they needed -- because they are the pros at this. Lesson learned this morning. Demand the NICU crew from the beginning!! Girlfriend was poked another two times with no success. I couldn't hold myself together at this point... It was the most hysterical I've been... I'm not sure who was crying more -- Piper or I. 

As you can see we had a rocky start, but the good of the day did outweigh the bad!!

Tomorrow Piper heads back in for surgery with Dr Haw. He will be freshening up the wound vac dressing and checking to make sure the infection isn't in the bone. And while she is sedated they will also be putting in a central line. This will hopefully eliminate the trouble we had today. A central line is much more secure and you can draw blood from it, as well as run the antibiotic through it. 

And now for a pearl of wisdom passed on to me from my dear cousin Carey -- 

Hoping it will encourage others going through a difficult time as well. 

Faith tells me no matter what lies ahead, God's already there. 

Let the prayers rise!!!

We're Back...

Piper just loves that Helen DeVos Children's Hospital with all it's amazing doctors and nurses that she decided she had to go back. We had hoped our next visit would be the regularly scheduled follow up with Dr Haw the day after Christmas... But no such luck!!

A combination of an incision that looked infected, a fever, and a continuous strange new respiratory noise catapulted us into the ER at 2am Saturday morning.

To make a VERY long story short -- she was loaded with antibiotics - readmitted into the hospital (where it looks like she will be staying now through beyond Christmas) and even had another surgery with Dr. Haw to clean out the "ick" and install a vacumm that will continuously suck the "ick" for the next couple of days.  Girlfriend did amazing... But what else is new?!

My heart broke when Dr Haw came to see her Saturday morning and drove home how incredibably painful an infection of this magnitude would be. Misery loves company, so when I asked how often he's sees post surgical infections like this -- I was shocked when he said this is the worst he's seen. Great... We wanted her to be the transposition kiddo that defied all the odds in a good way... Not take the "infection cake" in a bad way!!!

We once again covet your prayers for our fiesty Piper Noelle. I'd take sleepless in Allendale over getting sleep because we have to leave her on floor 7 of the children's hospital every night! (Inset tears here!!)

Those surgical farewells are the worst!! But 'for the greater good' as I keep telling myself!!

Let the (healing) prayers rise!!!

New Appreciation

I have a new found respect for the following groups of people...

Single Parents

Parents of multiples

Deployed Miltary Parents

And basically any parent that has survived those first couple of days after bringing their baby home from the hospital. 

I may or may not have told Piper she will be an only child today!! (Bry on the other hand keeps telling me she wants a brother!! Oh brother!!)

It's not that she's a bad baby... But after being held constantly the first two weeks of her life (and who can blame us for that) she has grown rather accustomed to not being put down. We have tried a plethora of things the last 48 hours - none of which Piper found pleasing. 

This was attempt one to the pack n' play on vibrate mode. And let it be said - swaddled, and no vibration was also an epic fail. 

The crib you'd think was a torture yard and the swing resulted in only 10 minutes of peace. About the time Bry drifted off to sleep was about the time she realized we tricked her and she wasn't being held anymore. 

I'm now taking advice on the following 2 subjects...

1) Getting your baby to sleep in the crib or pack n play. And how soon before we let her scream it out? Piper's won out every time thus far. Our token phrase is "she's been through so much!!" At which point we hold her for the next 8 hours. 

2) Exclusively pumping and those that have survived the process. It wasn't so bad when she was in the NICU/PICU -- but the transition home has been a bear!!

We headed to our favorite pediatrician's office Tuesday afternoon!! Piper was warmly welcomed by her Marcotte Family!! Dr. Marcotte said he couldn't hear a murmur at all, so the mitral valve medicine must be working. She's going to be tall like her daddy, and for just having open heart surgery last week she looks great. He warned us against exposing her to visitors prior to getting the Synagis shot (which helps to prevent RSV.) The shot is a work in progress... Insurance is the current hold up. (Isn't it always -- Can I get an amen Aubrey and Tara??) Once she's been poked we'll loosen up Fort Knox here and cautiously take visitors!!

Well Baby Visit #1 in the books!!

Thanks to everyone who has prayed for Baby O over the last 3+ months. How well she has done is truly an answer to all those prayers. There may be a 'Kelli Oosting: Stories of Prayer' book coming soon. 

1 Samuel 1:27

I prayed for this child, and the LORD has granted me what I asked of him.

Let the prayers rise!!

Monday, Monday, Monday!!

Born on a Monday... 12.02.13

Surgery on a Monday... 12.09.13

HOME on a Monday... 12.16.13

That's right Piper's peeps... Girlfriend got her walking papers this morning!!

Home is where the heart is... The repaired, fixed, untransposed Piper heart that is!!

She must have heard all the talk about the feeding tube yesterday and really kicked it into high gear. She took the full 70ml's every feed for her night nurse and one time took an extra 50ml's an hour later. Can you say piglet?

Her labs and echo looked great this morning and by 11am the leads were off and they had the IV line in her hand removed. Here is Todd, our favorite guy nurse, in action. (He took great care of her last Monday in the hours after surgery too.)

We rolled into the driveway at 12:34pm still amazed that Piper was in tow!! We had planned on at least a couple weeks in the hospital post-op - so the mere 7 days she spent on the PICU floor can only be explained through the power of prayer. How great is our God??!!

As Bry and I sat eating dinner tonight (thanks Brad and Erin!!) I told him the last 2 weeks have been the hardest, most challenging of my life... But that I wouldn't change a thing. 3 weeks ago I would have fast forwarded 6 months if you would have let me - and now the fact that I thought that makes me sad. 

Thank you to everyone who prayed for Pipe!! We look forward to the day when she can hear and understand just how amazing her story really is!!

And thank you to my mother-in-law who cleaned our house from top to bottom this morning making it "Piper ready" and oh so germ free!! 

Let the (healing at home) prayers rise!!

Sunday Update

Dr Haw came in again this morning - making it 7 consecutive days in a row that we've had the pleasure of seeing him!! (I couldn't resist asking him if he ever gets a day off!! The answer to that was something about a vacation after Christmas and that he got a day off in November!! This fixing hearts business is no joke!!)

Piper got another line out today - a large one infact from her jugular!! The picture makes it seem worse than it actually was... Our tough cookie recovered quite quickly!!

Piper feels incredibly free now... She only has 3 leads on her chest, an IV line (not in use) in her hand and a blood pressure cuff on her leg. FREEDOM!!!

The oxygen is still off and she continues to keep her numbers up all on her own. 

The feedings are going really well thanks to Elaina's help. It's amazing how little things, like position and timing, can make such a big difference. Our night nurse said she didn't take all of what they would have liked her to over night. However, her 6am, 9am, 3pm and 6pm feedings she took what she should. There was talk of putting in an NG tube (a feeding tube that goes through the nose) should she under preform. They said most cardiac kids go home with one because it's a lot of work to feed initially. We would continue to feed her as we have been, and then "tube in" the rest to get her to her goal amount. As of our departure time tonight she has met the goal amount. Praying hard she feeds for her night nurse like she did for us today!! If she takes less than 50mls at two consecutive feedings the tube goes in!! 

Leaving you now was the first smile picture I've been able to capture as she peacefully drifted off for her morning nap!!

Let the (no NG tube) prayers rise!!

New Kid On The Block

Piper is so excited to announce that in April she be joined in this world by a Baby Boy Cousin... Uncle Dan and Aunt Amy had a gender reveal party this week unveiling the exciting news!!

Congrats kids!! Piper couldn't be more excited. (As shown by this picture when I told her "it's a BOY!!")

Piper had a good day!! The oxygen came off around 9:30am and as of the time we left there hadn't been a need to strap it back on!!

Mommy and Daddy got help from Elaina (a feeding therapist) on how to encourage her to breath and eat at the same time. Sister gets so excited about mommy milk that she forgets to breath. Thankfully, Piper and Daddy were quick learners and O2 levels stayed in the 90's!!

I noticed twice today she would cry something fierce and each time it was when she had the hiccups. I know sometimes the hiccups hurt me - so I can only imagine how it feels on a freshly opened sternum. Poor Baby!!

Dr Haw came around this morning and said the incision looked great. No signs of infection and the culture had yet to grow anything. Thank you Piper's prayer warriors!!! Thank you Lord!!!

Let the prayers rise!!

Headed Home?

Morning rounds are a double edged sword! 

It's fascinating to see 15 brilliant MD's, NP's, RN's and residents stand outside your child's room and talk about her. 

But then there's this fear of what will be discussed and you basically hold your breath for the next 20 minutes while you stand (in the same circle as the brilliant people) and wait for some cue - positive or negative. 

Yesterday Dr Haw winked at me... Today he said the words "if today goes well you could be taking her home tomorrow or Sunday."

We planned on being in the hospital till at least Christmas so you can imagine my surprise. My wheels were already turning with... Must get house cleaned, must install car seat, must rearrange nursery... 

About as quickly as he said that we discovered her incision starting to look a little oozie. They did a swab of the area and now we wait on the culture results. Worse case scenerio is that they make a little incision and install a vaccume that sucks out the infection, next best scenerio is that she needs an antibiotic, and best case scenerio is that nothing grows and nothing needs to be done. 

We also did another trial off the oxygen and Piper yet again showed she continues to need it!! Tomorrow someone is coming to give us tips, tricks and techniques in relation to how to get her to remember to eat and breath at the same time. 

Pair the above two things with a fussy baby and you get a stressed out first time mom. Our nurse joked about letting me lick Piper's pain med syringe after he was done dosing her with it!! I told him they need to start serving daiquiri's!!

It's amazing how God gives you what you need when you need it. I was crying and went to Facebook as a distraction. And what do I have but a message from Bennet's mom, Nicole. Bennet, if you recall, is Piper's transposition buddy and now soul mate. 

The message went as follows...

I continued to cry, but only because I was so relieved. 

Then I told Nicole about the suspected infection and I get this message...

Thank you Jesus for this family who has trudged this road before us!!

Thankful also that tomorrow is a new day and that this one is almost in the books. 

Let the prayers rise...

I can't say they didn't warn us!!

It wasn't the worst of days, but it wasn't the best of days either!! 

We've had what I will call our first set back. 

Piper had another echo this morning and during the doctor's time of rounding it was mentioned there was a pressure concern with her mitral valve.  

One of the doctors on her team was going to take a closer look at the images and get back to us. In the mean time Dr Haw explained the issue in medical jargon and this is what I retained... If it's mild pressure on the valve we use a twice daily med long term. If it's intense/severe pressure then he would need to open her up again. 

Dr "I'll take a closer look at the echo" was back in our room within 5 minutes saying our pressure would be graded as somewhere between mild and moderate, but forsure not full blown moderate. He said that some of his partners would just monitor at this stage, but he prefers to be proactive and would like to start a blood pressure medication that has been found to help this mitral valve issue as well. He said it's safe (cheap) and not uncommon in a heart situation like ours. He went on to say that her heart is still trying to figure itself out and there is potiential that she won't need it forever.

Piper attempted to go off her oxygen today -- attempted being the key word. She did ok initially, but then started to waffle. Our nurse said this isn't a set back -- and that she's only on an ever so small amount. Her problem is that she forgets to breath when she's so excited about eating. And who can blame her!!?? Pipe probably eats every meal like it's her last since we gave her squat for 2 days this week!!

And now for the positive portions of our day...

Piper's fluid intake restrictions have been lifted. She can eat as much, as often as she would like. 

We are now back to changing diapers as the cathedar has been removed!! Who would have imagined this would be so exciting?!?

They have unhooked another line, but not completely removed it. If all goes smoothly over night that should come out  tomorrow. 

And last but not least -- Bry got a morning of snuggles and I got an afternoon of the same!!

And now for a quick side note of appreciation... To ye who snow blew our drive way 2 days this week THANK YOU!!! It's driving Bry crazy not to know who to thank!! So thank you snow angel out there!

Let the (mitral valve and oxygen) prayers rise!!

 

And I Quote...

Almost another day in the books here on the 8th floor of the Helen DeVos Children's Hospital. And what a day it has been!! 

God is just SO SO good to this little gal! 

Milestones from the day... 

PIPER GOT TO EAT AGAIN!! 

My mother's intuition about being hungry was affirmed this morning when the night nurse said she was fussy most of the night -- and likely from hunger!! Thank you very much. Score one for the first time mom!!

Piper got TWO of her big lines out (the pic in her head and the art line in her groin.) 

They dialed way down on her oxygen and she did beautifully. 

Sister got a day full of snuggles!! I literally held her from 10am to 5pm almost straight. (Dad going to work for the day means I don't have to share her!!)

Dr Haw came in this afternoon to check on Pippi Long Stocking (don't you just love that the name Piper can have so many cute nicknames?) Vanessa (our fabelous nurse the last three days) gave Dr Haw a report from the day. He normally is very cautious to give praise but he said... and I quote... "She'll be home before you know it!"

Thank you Jesus!!

"This is the Lord's doing, and it is marvelous to see" Psalm 118:23

Let the prayers rise!!

Day 2 - Post Op Report

Girlfriend had a great first night -- I called a couple of times during the night to check on her and besides a slightly elevated blood pressure and some decreased urine output everything was perfect!! (Our nurse said those two things are super common in these heart babes the day after surgery.)

Piper is significantly less wired and tubed than she was at this time last night. Not to mention not quite as sedated!! Her cry would break your heart... just so meek and mild!! (A result of being on the ventilator for a day and a half.) They said it will go back to the room clearing roar it use to be... It will just take time. 

There is talk of starting oral feedings tomorrow. She'll start with a smidge (2oz) and if she proves herself will build to more through out the day. Her cries today were likely due to hunger pains (this is my diagnosis as mom.) I would be one unhappy camper if I was forced to forgo a dozen plus meals in two days.  And speaking of meals... I now completely disagree with the statement "There is no use crying over spilled milk!!" It spilled -- and I cried!! Enough said!!

Piper had two echocardiograms today. Here is a picture from round two. She passed both with flying colors. Thank you Lord!!

It's amazing how much changes in 24 hours!! We are so thankful in Piper's case it's for the positive. 

We felt A LOT of love yesterday!! And I mean A LOT!! Between handmade cards from caring little girls, to txts, to Facebook messages, to voicemail messages, to a prayer quilt, to meals and snacks prepared in advance... We consider ourselves very blessed!!

We look forward to repaying all of you when the time is right!! 

Let the prayers (continue to) rise...

Praise God From Whom All Blessings Flow!!

Piper's Prayer Warriors...

All the Oosting hearts are happy and "untransposed" as I type this update!! 

We just met with Dr. Haw who reports that he would call the surgery A SUCCESS!! (How great is our God!!) The echo they did in the OR looked fantastic.  I was over the moon and immediately told him he was my new favorite doctor. Dr. Haw was quick to say that we are not out of the woods yet. The next 12 hours will be the most critical. Our risk of complications dramatically goes down once outside that 12 hour window!! 

They plan to keep Piper sedated until tomorrow. We've learned in just 7 days that she's a bit fiesty and they don't need sister busting a stitch!! 

I feel like a broken record... But THANK YOU from the bottom of our hearts for the outpouring of prayers!! We can't thank everyone enough raising up Pipe to our mighty God and Great Physician!!!

And as Nana Oosting just said...

LET THE PRAYERS OF PRAISE ARISE!!

 

Jeremiah 29:11

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

The plans for our Piper changed today!! 

Piper's surgery will not be Wednesday, as we were previously told -- but instead bright and early Monday morning!! (7:30am -- Let the prayers rise!!) Piper continues to do beautifully. The move up isn't due to a change in her status, but rather a communication error from the start!!

Monday is good because the Dr. Haw should be fresh coming off the weekend and this should mean we get to go home 2 days sooner... BUT -- I had hoped to get those two extra days of cuddles and 2 extra days to beef her up. (Did I mention she eats like her daddy??) Not to mention two more days to pray and prepare my heart!!!

As the verse states above - This is God's plan for Piper - he knew all along it was going to be Monday!! 

Leaving you now with a summary of our Saturday in the NICU!!

Piper Noelle Oosting

It's good my hospital ID bracelet has my name on it, because these days I have no idea who or where I am. (Hello, could Spectrum Health be any bigger??) The only thing that matters is the route to get from my room to Piper's -- and I have that down pat now!! 

The last 5 days have been absolutely amazing!! We are blessed beyond measure and so honored to be called Piper's parents!! How great is our God?!

Here is the cliffs notes version of events.

Induction Sunday night. I progressed beautifully, but by mid morning her heart rates were fluctuating down enough (although they assured me she wasn't "tanking") that rather than drag things out that they would prefer to do a c section. Dr. Dood said for a "non heart baby" he would have waited longer, but for "O" he'd prefer to err on the side of caution.

From the moment Dr. Dood called csection -- to the time she was born we estimate it was about 17 minutes. The NICU team was there, as were about 15 others. Apparently it takes a village to raise a child, as well as perform a csection!!

After months of hearing that heart defects are boy dominant -- no one was more shocked than us when someone called out "IT'S A GIRL!!!"

And the rest as they say is history!! 

Our little honey is doing so remarkable that surgery isn't schedule till Wednesday December 11th. We have been told that Dr. Haw has a number of infants and children in worse shape than Piper. So since she is the most stable babe in the bunch, she will wait while he tends to the others. I'm not complaining one bit... I'll take all the new born cuddles I can get!! 

We have had nothing but amazing NICU nurses!! These ladies have a gift!! They have been nothing but kind and compassionate to Piper, Bry and I since we arrived!! We are already forever indebted!! I think Bryan has talked hunting with each and everyone of them thus far!! And if you know Bry, this shouldn't surprise you!! The ladies have all been good sports!!

We praise God for how well she is doing!! Piper's stats are truly an answer to months of prayers!! Dr Lee, her cardiologist, comes to check on her everyday and even he can't believe how good her numbers look. (Just throwing it out there that it's not just me saying how great she is... because we all know I'm partial!!)

Piper had a 2nd echocardiogram done Tuesday morning due to some falling oxygen saturation levels - turns out it was absolutely nothing. Thank you Lord!! Lindsey that did the echo goes to a neighboring Allendale church. She told Bry that church has been praying for Baby Oosting -- so she already knew all about us!! We feel so covered in prayer by our own church (Love you 2nd CRC!!) and now to hear that Rusk CRC had been lifting us up is pretty amazing!! It's evident by Piper's status that God has heard our prayers and has answered the first handful!!

Piper had two special visitors on Thursday morning. Her pediatrician, Dr Marcotte, and nurse Renee. (Also known as my employer and BFF.) As shown by this picture taken during the visit you can see how excited she was to see them!! 

Sorry guys... I promise she loves you!! Auntie/Nurse Renee brought all kinds of pink adorable sleepers that got the NICU nurses seal of approval. We couldn't get them washed quick enough!!

And here one is in action already...

Girlfriend doesn't hold still long enough for a clear picture to be taken, unless she is swaddled in a burrito style wrap!! 

Case in point... Wrapped tight and loving it... 

Keeping her healthy is the important thing right now. At this moment we're asking for no visitors. Thank you for respecting the wishes of her NICU team and her helicopter parents. 

As things stand now surgery will be in the morning on Wednesday. As with anything medical that is subject to change. Pray for a smooth couple of days between now and then, as well a successful surgery!! I don't think there was anything more difficult last night than being discharged myself and not getting to take Pipe with us!! We are looking forward to the day when we will all three leave together!!

Thanks for the outpouring of calls, texts, cards, Facebook messages, gifts, meals and prayers!! We appreciate each and every one of them!! Even if we haven't had time to respond!!

Let The Prayers Rise!!

Tangible Hope... Named Bennet

 

We had the pleasure of hosting this handsome babe and his amazing parents for dinner Monday night.  And by "dinner" I mean we ordered pizza from Pizza Hutt. I'm 9 months pregnant... not Martha Stewart people!!

 

 

(He's a mover and a shaker if you can't tell from the picture.)

 

 

Bennet is 10 months old and should be the poster child for successful transposition surgery.  I can't even begin to tell you the amount of hope and encouragement this family has provided us since the moment Helen DeVos Children's Hospital connected our two families. Let it be said - no matter what crap life throws at you - it's helpful to find someone that's been through that same crap ahead of you and has successfully and triumphantly come out the other side.

 

Bennet's heart defect wasn't detected prior to his birth - so when he came out blue and continued to stay that way you can only imagine how these parents must have felt.  While we know the days ahead are likely to be emotionally charged -- We are thankful for the plan that is in place and the 3 months of prayers that have been said for our sweet little guy (or perhaps gal.)

 

Bennet was even willing to show us his scar. If you didn't know he had open heart surgery at 10 days old you probably wouldn't give the scar a second look. Obviously, the scar is the least of Bry and I worries, but it was nice to see minimal damage to that glorious baby skin.

 

Bry fell for Bennet hook, line and sinker...

After Josh, Nicole and Bennet left Bry said "Do you think our kid will be as cute and fun as Bennet??" Oh dear husband... I certainly hope so!!!

 

 

In the picture of Nicole, Bennet and I - I resemble Free Willy so we are purposely leaving that out of this post. 9 months pregnant isn't flattering for anyone, right?

 

 

And now a funny story from the office of Dr. Marcotte. 

I was talking with a mom and teenage boy about the baby names we've picked out.  When I told the teen our 'girl name' he promptly said "oh I love that name too - it's what we named our pygmy goat." I couldn't help but laugh! The old me might have run home and told Bry we needed to change our girl name. She can't share her name with a goat, can she?? The new me doesn't give a crap and loves the name no matter what!!

 

Betcha wanna know our girl name huh... stay tuned!!

And just incase there was any doubt about how special this baby is -- the odds of being born with transposition of the great arteries is 1 in 4000 or that of flipping a coin 12 times and each time it landing on heads. 

T-minus 4 days till our actual due date!!

Let the prayers rise!!

 

 

 

 

 

 

 

 

 

 

 

 

Trying to keep the glass 1\2 full...

 

We had our rescheduled hospital tour Monday night (10\28.) Knowing what I know now I wish it couldn't have been rescheduled.  The tour is obviously geared for couples whose baby isn't going to be snatched from them immediately after birth and teleported via secret hospital tunnels to the NICU for massive cardiac intervention.

 

The following phrases are what almost brought me to hysterical tears in a room full of 1\2 pregnant complete strangers. (The only thing that kept me composed was the thought of how mortified Bry would be if I actually had a complete and utter meltdown.)

 

• "Skin to skin is the best thing for you and your baby after birth."

 

• "Breastfeeding is ideal so we always attempt to start that within an hour of birth - even with a c-section we try to get baby fed within 90 minutes. "

 

• "You and your baby will stay right in this room for the 2 hours following labor and delivery - you can even participate in the first bath if you feel up to it."

 

• "We do have a nursery for babies, but it's most common, and best for the baby to be by mom during the hospital stay."

 

Baby and Mama Oosting will not enjoy any of the above things that most new parents take for granted.  Sadness.

 

 

I keep trying to tell myself it is such a huge blessing that we know about this baby's heart ahead of time and we don't have to go through what Bennet and Charlie's families did.  Can you imagine the terror of not knowing why your baby is turning blue and crashing in the hours after birth??  Ignorance is not bliss people!!  Knowledge is power!! This is something I repeat to myself on a daily basis. 

 

If I were to list all of the amazing "God" things that have transpired as a result of the TGA (transposition of the great arteries) diagnosis - the list would go on for days.

 

Example:

 

We had our 35-week visit and growth scan on Thursday.  To say I was nervous about the growth scan would be a gross understatement.  We haven't exactly received the best news from ultrasounds so you can understand my apprehension.  As it turns out our ultrasound lady (Rhonda, you were my angel that day!!) has a 22-year old daughter with a heart defect. (Heart moms are a special breed of people I've come to decide, and they band together like Ninja's!!)  She told us everything she was measuring and estimated the weight for us right then and there.  Thanks to my trusty "What To Expect When You're Expecting" phone app I knew the baby should be about 6 pounds. How big did Rhonda say our little nugget was... 5# 14oz!!!!  Doesn't get much closer to 6 pounds than that!!! Praise the Lord!!  Heart was even pounding away at a solid 145.  Dr. Dood said he doesn't need to see me for another 2 weeks, which was music to my ears -- It made me feel so normal!!

 

 

Getting back to that band of Ninja's - I have been taken in by more heart moms than I can almost count!!  Thank you Dana, Nicole, Jodi, Rachel, Jana, Kim and Stacey.  I'm having coffee tonight night with my 7th grade homeroom teacher. She was quick to welcome me to "the mom heart club" and give me so much hope and encouragement.  On a side note - am I allowed after 16 years to call her by her first name or do I have to call her Mrs?

God's timing is so amazing and this example proves it!!  For a couple of weeks I had been hoping one particular heart mom would call the office to schedule a flu shot or a check-up for one of her kids.  No call, but who do I run into in the Spectrum Health parking lot while on my way to visit this handsome new bundle of joy??

Yup, none other than Stacey!!  I was practically speechless but, at the same time, had so much to ask her. She was so gracious with her time - we chatted for well over 30 minutes. (After a 12-hour shift, don't most RN's just want to get home??) Her Ryan doesn't have what our baby has - but the emotions and experience are similar.  What are the odds her shift would be ending and she'd be leaving at the exact moment I was walking into the hospital? 

How great is our God?!?

I could go on and on about how our cup continues to runneth over despite this initially devastating news. 

The lyrics to Laura Story's "Blessings" hit me hard recently...

 

"Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise."

 

 

 

LET THE PRAYERS RISE!!

Smile...

The last time Bry and I had "formal" pictures taken was our wedding. I think it's fair to say the following photo shoot was a tad over due. (If you asked Bry, he would of course disagree!! I think it must be hard-wired into the male DNA to hate pictures. I played the "heart card" and he was putty in my hands!! Love that guy!!)

I was against maternity pictures initially... But after some convincing (thank you Dana) I'm so glad we did them. 

We now have 3 "transposition" families that have entered our lives. (Thank you Lord for the hope they have given us.) All 3 families independently said how important it is to document our journey. They have warned us how hard it will be to take pictures while our babe is hooked to a million machines with tubes coming out of everywhere, but that these kids will have questions someday and it's good to have a visual reference for them. These maternity pictures were my way of getting the ball rolling. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Can you see the fear in my eyes? Who puts an 8 months pregnant woman on a crate not suited for a bunny? (Love you Lindsee!)

 

 

 

Rejoice always

Pray without ceasing

In everything give thanks

For this is God's will for you in Christ Jesus. 

1 Thessalonians 5:16-18

 

 

 

LET THE PRAYERS RISE