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...