Sunday, December 28, 2014

Piper's Plan

Piper Grace the fashionista!
What a busy busy holiday season! I feel like we've been crazy busy since Thanksgiving! Grace Blankets came in IN DROVES (more about that in my next blog), Piper's story officially aired on TV, and her and I graced the cover of our local newspaper! We are officially DIVAS! (Matt says this is not a new development...but what does he know!?)

With all the hoopla of preparing for the docu-series and getting blankets organized for delivery, Matt and I have been patiently waiting to update you guys about our next steps with Piper's hospital stay. Please bear with me below, as I will try to explain, to the best of my ability, what we are planning on to get this little star home! 

Piper was doing OK on her oxygen, and weaning down on drugs, when she kind of reached a plateau in her nose cannula settings. We, along with her NICU team, asked "Is this still her body healing from lung injury caused by CDH?" or "Is this due to her having a couple (patchable) heart holes that are ready to be fixed?" We needed to get over this hump, and we needed to confirm how we were to proceed with her care. Heart or Lungs? Fix holes or go home first? Tracheostomy?

Pipe's team decided to proceed with a heart catheter procedure to study how her body was doing with the holes in her heart (VSD & ASD: ventricular septal defect & atrial septal defect), and how her lungs were processing oxygen as they healed. (This is why she was intubated in pictures...all standard procedure for the heart cath.) The results of this study would tell us which symptoms trumped priority during this hospital stay, and guide our home course. 
The cardiology team concluded that the plateau Piper has reached in the oxygen weaning process is still due to her lung injury from her diaphragmatic hernia; and the holes in her heart can be placed on the "back burner" for repair at a later time. Lungs....that is what we will concentrate on. These results shifted our care to the NICU's CLT: Chronic Lung Team.

The Chronic Lung Team of doctors and practitioners have a few tricks up their sleeve to beef up baby's lung function and get babies HOME, stable, and on the support they need. They assessed Piper, and came up with a few options to try in order to get her lungs in shape for the journey home:
    • 10 day steroid course to improve lung function
    • inhalant meds added to heal lungs
    • move her feeding tube (to trans-pyloric) to decrease risk of pukeyness/aspiration 
    • Tracheostomy - to go home on a vent for however long it takes for lungs to heal
We have accomplished the first 3 of the list above...and this momma was going to fight that last little bullet. Why trach my baby when I have seen her breathe successful with just a nasal cannula? Nope, I'm fighting that. Nope.

Being a stubborn Texas Woman, it took me a few days, but I slowly started to process what a trach procedure would mean for Miss Piper. Earlier in the week, with her nose cannula, Piper's stats and vent support settings had been all over the place. She was turned UP on her oxygen, to our frustration, and I realized that docs were having a hard time estimating how much of her O2 & Nitric Oxide (NO) was escaping from her cleft lip/palate and not even entering the lungs! That darn cleft lip & palate was preventing her lungs from getting the gasses they needed from the machines in order to heal! Prior to her heart cath procedure, Piper was intubated, and within 20 minutes, her vent support was being TURNED DOWN! Why? - Because her face, i.e. her clefts, were taken out of the equation; and her lungs were getting what they needed without the hindrance of air escaping from lip/palate. Hmmmm.

Driving home from the hospital that night...EPIPHANY! We need to take her face out of the equation. Duh! Stop being so stubborn, Tara! (yea, I talk to myself while driving, but who doesn't?)
Placing a tracheostomy ("trach") in Piper's airway, would allow her lungs the gasses they need to heal, AND keep her vent support settings lower than when she is on a nose cannula! Weaning those settings down means going home.... so let's do it. What exactly is a trach, you ask? 

tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and breathing is done through the tracheostomy tube rather than through the nose and mouth. (Mayo Clinic)

This sounds invasive, and it is, but it will get Piper back to a place where the word "home" is on the horizon. Placing a trach tube will narrow our focus, get us prepared for home, and will give the lungs the opportunity to heal without risk of further injury. Time is what is needed to heal Piper's lungs...and a trach will allow us to spend that time at home, rather than the hospital.  Time she can be sitting up, playing, learning, developing and doing normal baby things without a tube in her mouth! WOW!

SO, here's what the plan is shaping into:
    • Tracheostomy procedure this coming week
    • Heal up from procedure
    • Wean new vent settings to acceptable "going home" state
    • Wean those icky hospital druggy drugs
    • Train mom & dad on home trach use 
    • Home
How long will the above plan take to result in a home coming? Who the heck knows, but we are well on our way and we are happy to be moving forward. When impatience starts to creep in during this process, I remember when we were just "surviving" on an hourly basis...look how far we've come. For that, I will be grateful for this long journey.

OK, my fingers are officially tired of typing medical jargon! Onto the fun stuff!
Piper Grace has been a total goofball lately. She tracks movements of her favorite silly nurses, loves to have her hands in her mouth, and thinks her momma is super funny! She has been such a doll, and tolerating this temporary intubation so well. 

Please pray for a smooth trach procedure this week, Piper's pain to be managed well, Mom & Dad to get some sleep, and for all to BE STILL and GRATEFUL for where we are. Piper is here. Piper rocks our socks off!

Tuesday, December 2, 2014

TV Times & Blankies!

Hey all!
While there are some things in the works for updating about Miss Piper, I thought I'd touch base about 2 other very cool things! Blanket Drive and the documentary premier event!

Our great friend, Bobby Cooley, was awesome enough to donate his time and talent to create that for our cause! We will be using it for future flyers, thank you cards, donation letters to the hospital, info cards and all sorts of other fun ways! Thank you, Bob, for making us look and feel official. You rock our chucks off! 

About 30 fluffy blankets have trickled in thus far, with many more on their way this week! Checking the mail for blankets has become my favorite pastime, and I look like a crazy lady stalking the mail man...but I'm excited! Nurses are excited! Cannot wait to stock that NICU linen closet; and see all the fresh new blankets with these sweet babies! You guys are doing awesome, and we are so appreciative of your help in giving back. If you need a blanket drive refresher, or need to pass info along to a friend, see our Blanket Drive Blog!
You can count on me to post a fabulous photo surrounded by fluff once all the donations are in! Feel free to email me if you need anything, or have any questions at all. 

Onto the next...........
On Nov. 18th, Matt and I, along with our families, attended the VIP Children's Mercy premier event for the Inside Pediatrics docu-series. We had a great time with hospital insiders, screened the first episode, and yours truly spoke on the Q&A panel in front of a BUNCH of well dressed people. YIKES! 
  1. I did not faint - yay me.
  2. I was sitting next to our favorite surgeon, Corey Iqbal!
  3. I got to chat about the miracle that is Piper Grace!
  4. People clapped. (They MAY have been happy to hear of Piper's progress, but I'd like to think it was because I was just so darn awesome.)
The filming of the docu-series has been a crazy roller coaster ride, and we are so excited to see it come to fruition. 6 episodes will follow a number of stories and hospital staffers; and each of those episodes will touch base with OUR journey...starting with me pregnant! HUGE and pregnant. HUGE.
I will list the air dates in full below, for our local peeps, but worry not if you aren't in our viewing area! Full length episodes will be available online, after each is aired, at
So set your DVR's, grab some kleenex, and buckle up!
Airing on KMBC-TV 9 Kansas City

Episode 1: Wed, Dec 17 at 7:00 PM

Episode 2: Wed, Dec 17 at 7:30 PM

Episode 3: Thu, Dec 18 at 6:30 PM

Episode 4: Fri, Dec 19 at 6:30 PM

Episode 5: Sun, Dec 21 at 12:00 AM

Episode 6: Sun, Dec 21 at 12:30 AM

Encore presentations on KCWE 29 Kansas City

Episode 1: Sat, Dec 20 at 7:00 PM

Episode 2: Sat, Dec 20 at 7:30 PM

Episode 3: Sat, Dec 20 at 8:00 PM

Episode 4: Sat, Dec 20 at 8:30 PM

Episode 5: Sun, Dec 21 at 8:00 PM

Episode 6: Sun, Dec 21 at 8:30 PM