Piper's Plan

Piper Grace the fashionista!

Whew! 

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? 

A 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!

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!

First off, HOW COOL IS THAT BLANKET DRIVE LOGO!?!?!?!?!?!

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! 

REMINDER: BLANKETS DUE 12/20!

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 www.InsidePediatrics.com

So set your DVR's, grab some kleenex, and buckle up!

Airing on 

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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 

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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

 

Help Us Pay it Forward - Grace Blanket Drive

Hey ya'll!

Just a couple quick updates before I get into the meat of why I'm blogging tonight. Since our "blip" setback a couple weeks ago, Piper has been extubated, and is back on CPAP cannula. She is alert, chatty and back to her strong willed self. We are so grateful for all the staff that helped intervene, and get her back on the mend. We are back to our old routine of wean oxygen, wean drugs, add feeds....repeat. Please continue praying for her baby steps to success!

Also, we are excited to attend the premier of Children's Mercy's docu-series, "Inside Pediatrics," Tuesday night! This is a huge deal for us and I can't wait to blog pics and more info asap!

Alright. Down to business!
For a while now, it has been on my heart to give back, and acknowledge our love for the NICU staff at Children's Mercy. I've thought a lot about how we could give back...and I've come up with a plan that can involve YOU!

Matt and I have been beyond blessed to have such amazing gifts sent to us; as well as having our own money to spend on all of Piper's adorable blankets and linens. Most of the time, in the NICU, this is not the case. Our night time nurses pride themselves on the task completed at the beginning of their shift - bathing cute babies and giving them a fresh clean bed to sleep in. Our nurses are in LOVE with all of Piper's wonderful blankies, and it hit me...that's how we will give back!

There are over 75 bed spaces in the NICU, and each baby gets a nightly crib linen change. I've been up at the hospital when nurses are scrambling to find nice blankets for these babes when the patient count is at an all time high. More often than not, stark white hospital linens are used; which are great, but imagine the warmth a new special blanket would give the staff, the parents, the babies in need! A blanket with color, a blanket with pizzazz, a blanket sent with love.

We are so excited to be doing Grace Blanket Drive for the sweet babies of Children's Mercy Hospital!!! Named after our sweet Piper Grace, and made possible by her very own prayer warriors! I am asking for your help! If you'd love to pay it forward with us, consider donating blankets to our cause! I've listed extended info and ideas for ya below.

CONTACT: me, Tara, at tarajarvis13@gmail.com for the address to mail blankets to.
TIME FRAME:  Please have all blankets sent by 12.20.2014

WHAT IS NEEDED?
NEW baby blankets of all types, colors or prints! Have some fun, tell your friends, and use your creative gifts! Nurses love a fun spiffy new blankie!

• Sew your own! - About a square yard of fabric will do. (flannel & fleece hold up well to washing.)
• No Sew Fleece Tie blankets -can be made by youth groups, as a life group activity, girl's night in, etc!
• Google "Fleece Tie Blanket Instructions" for a bajillion simple how-to's
• Buy a Blankie!
• any medium sized baby blanket or throw 
• cotton or flannel receiving blankets 

Seems simple enough, right? I am so excited to get started, and I hope you are too. These nurses, and this NICU have blessed us with their unwavering love and care for Piper Grace, and we cannot wait to give back. We are counting on your help! Please do not hesitate to email me with questions! Here's to warming hearts, by blanketing babies with love.

Our Little Blip

I am in a horrible, terrible, no good, very bad mood. There, I said it, I got that out there. I feel better already.

Miss Piper Grace has had a little bit of a setback. Last week, her feeds were going well, she was down on her oxygen, and we were very close to coming home. We had trained on home equipment, started nursery decor scrambling, and had gotten quietly excited. Quietly, because we know our plans matter not to Piper Grace and her healing. Silly silly girl.

Over the weekend, a couple changes were made to prepare Piper for home:

1. Increased her feeds from 85ml to 105ml every three hours. This allows mom & dad to sleep/skip a feed overnight and get everyone rest. (MOST babies tolerate this change fine. MOST babies.)
2. Discountinued the use of PRN (as needed) morphine for her once daily meltdown. This was such a small dose, we'd trial off and see how she tolerated it. 

This is when Piper chimes in and says, "Hold up momma, I'm not MOST babies!"
The increase in milk made her tummy FULL, and the lack of morphine triggered a bit of drug withdrawal. The end results of both? - Three days of a very pukey Piper. Unlike a normal, healthy baby who pukes, Piper cannot keep her stats stable when her ONE good lung becomes compromised. A couple of days of icky pukiness resulted in her aspirating a bit of her spit up into her good right lung. Once this lung becomes compromised, Piper has NO help from the other lung, and very limited reserves to help herself stabilize and oxygenate.

Chest X-ray has confirmed a lung compromised by aspiration pneumonia. This one good lung cannot do 2 things at once for Piper. It must fight this infection; but it cannot keep her body oxygenated enough as it does so. One thing has to give. To allow Piper's body, with the help of antibiotics, fight this aspiration pneumonia, we have to get her little body help in the OXYGEN department.

When an immunocompromised babe is needing breathing/oxygenating/gas exchange help, there is a hierarchy of support a NICU can provide. You'll remember me talking about most of these in earlier posts. (I've listed from MOST invasive/serious support - - - to least invasive support.)

• ECMO - heart lung bypass to oxygenate baby while their lungs rest
• Oscillating Ventilator - intubated baby with extra vibration for lungs to remain open
• Traditional Ventilator - breathing tube in throat regulating breathing/oxygen
• High Pressure/CPAP nose cannula - no tubes in throat, getting oxygen in nose
• Traditional nose cannula - provides minumal oxygen air flow to baby to keep stats up

Last week, when discussing home coming procedures, Piper was on her traditional nose cannula at an appropriate concentration to come home on! We were so proud! After aspirating her spit up, getting right lung pneumonia, and gradually needing more help to oxygenate...Piper has gone up to the Oscillating Vent as of this evening. Stop, look back up at my list above, and sigh along with me. DARN IT!!!! We were so close! I AM FRUSTRATED! 

Piper is needing some serious support right now to keep her oxygen sats up when her body fights this infection. She had to be paralyzed, re-intubated, put multiple IV lines in, and feedings stopped. Poor thing just needs help while that lung heals. That...will just take time. This is a reminder that we are not on anyone's schedule but Pipe's. She will gradually clear that lung, prove it with x-rays, and then we will gradually remove support as slowly as she sees fit. A step back that reminds us to not take advantage of anything. She will clear this hurdle...and you better believe that her momma is holding her starting blocks! No rush Pipes, thanks for reminding us. 

This set back, or blip as I like to call it, has thrown my attitude for a loop. I feel I have remained logical and composed through these 12 weeks of NICU. The fun mom that chit chats and knows when to talk medical and when to give comic relief to nurses working their butts off. Sunday night, I lost my sparkle. I logically knew we needed to get Piper the help she needed, but I was emotionally done. Done with not being able to fix it. Done with being strong, done with being scared, done with being tired. Done. I had walked into the NICU then moment they were intubating my baby, and I found a quiet place to cry. To be done. 

Trying my hardest to regain my composure before walking to Piper's cube, I experienced the exact reason I am in love with this hospital. Sitting alone in a NICU family room, multiple nurses walk in to be my shoulder. A nurse who has watched Piper during night shift lately, a nurse who watched Piper when she had her gtube, a nurse who was in the room when Piper was born and not supposed to live. The nurse who looked over our baby when her survival was assessed hourly. Surrounded by strong women, I am overwhelmed with love and I just CRIED. These women know our story, know our Piper, know our struggle, and are pulling for a happy ending just as much as we are. To look in the face of a woman who tells me to "come here, momma, and cry" is to feel completely wrapped in God's love and care. These women let me cry, let me be frustrated, and then picked me up. I cannot put into words how grateful I am for the women of Children's Mercy. The love I feel from them in my time of need is all encompassing and I know they are being used to remind me that it will be ok. 

It will be ok. Piper might need some serious support (we're thinking a of couple weeks,) and then we will be back to our bright eyed girl working to get home. We are taking things day to day, trying our best to be patient as this ickyness dissipates, and her numbers improve again. Bright side? Been there - done that - and we know Piper can kick extubation's butt when the time comes! 

Until then, please pray for everyone's well being. I'll make an easy list of specific prayer:

• Piper's numbers stay same and DO NOT WORSEN
• That her lung clears up quickly
• That we stay away from needing ECMO (big deal prayer!)
• That she extubates and is comfortable soon
• For mom and dad's weariness and fear
• For the fabulous women of the hospital to know they're appreciated & loved
• For patience to flow from us to the staff. No hurrying Piper Grace
• For no icky flu bugs sneaking into that NICU

At times like this, I am reminded that it is easy to be grateful and faithful when things are on the up n up. When times seem dire and frustrating, I must stop and remember who got us here. Piper is alive when she wasn't supposed to be, and no set back will let me forget that. She is HERE and she will FIGHT and we strive to give God the glory for even the tiniest victory. She is here. She is fighting. Go Piper go!

Have you  not heard? The Lord is the everlasting God, the creator of the ends of the Earth. He will not grow tired and weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the week. Even youths grow tired and weary; and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint. (Isaiah 40:28-31)

Power it Up PIPES!

Choosing to Share Our Story...on Film

Greetings all!
We have had a slow, uneventful couple of weeks after Piper's G-tube procedure. We've learned slow is good, boring is good, nothing new during doc rounds....goooooood. God is good.

Piper's G-tube procedure was a success, she quickly extubated 2 days after surgery, and has been taking FULL feeds through her new tube ever since! She is down on her pain meds,  up on her awake activities, and is weighing in at 11 pounds 2 ounces ( she was born at 7lb 15oz.) We can safely say that we are on the home stretch of this hospital stay. Just a bit of oxygen weaning and drug withdrawal to get through. Estimations of home by Halloween might be close...or maybe by Thanksgiving if we need more time. To be honest, we could care less. The fact that we are here, talking about home procedure, is amazing, and I'll wait as patiently as I can until there's a specific date to shout from the hospital roof!

That's it, currently, about Miss Piper; but I'm blogging to discuss something we've been excited to share with you! You've seen me post bits n' pieces about our "camera crew" or "producer," and now's the time to spill the beans!

About the same time that I blogged our very first Piper blog, the "Bomb Diagnosis" blog, we were discussing sharing our pregnancy journey on a docu-series our hospital was working on. These people came into our lives at the exact moment we were trying to handle preparing for Piper's death with our faith, with grace, and with family by our side.

This docu-series would go on to follow doctors, nurses, patients, and families all over the hospital, dealing with multiple pediatric diagnosis. They aim to show this world class hospital, with world class physicians, giving world class care to the world's smallest humans.  What an awesome thing to be a part of.

We first agreed to this docu-series, knowing that our story would be painful to watch. We were preparing to birth a child, then mourn her death in a very short amount of time. Who would want that on film? But wait...
once mentally prepared for our journey, we concluded that sharing our story with others was such a perfect step, and gift God had given us to spread our faith. We would agree to this, to try our best, to be an example of a young family relying on God and each other in a time of utter sorrow. We thought if we could show God's Grace when mourning Piper, and touch one person, one family in need, that it would be worth it. We had no idea when we would be able to watch ourselves go through such a loss on camera, but we knew we would regret if we didn't capture our journey, even for ourselves. So that we did - filmed our journey...every bit of it. What a journey it's turned out to be!!!!!!

Our camera crew has been with us through scary meetings, somber ultrasounds, packing for the hospital, my water breaking, my labor, Piper's birth...and every crazy miraculous event since she came into this world! They were in the surgical room when Dr. Iqbal fixed her belly, they were there when she came off the oscillator, they were there when we held our girl for the very first time. They were there. What a blessing they've been. They have captured the miracle that is Piper Grace, and we get to share that with you, with strangers. This journey has changed from one of graceful mourning...to one of miraculous triumph, and we get to watch it unfold on film. I am so excited that our story has changed, and am so glad we decided to share, to witness, to use Piper as a living breathing example of our God's work in action!

For our KC folks - the docu-series "Inside Pediatrics" will air, in 6 episodes, here locally on KMBC sometime in December, and we will keep you posted. For others, I'm hoping once episodes air, that I will be able to post links to them online for all to view. We can't wait for you to see!

I look back to the beginning of filming, when we thought the worst was upon us, and cannot believe how far we've come...then I realize I will re-live the fear, the pain, the miracle when we watch it on air. It will be tough to watch, but I am nothing but grateful for the experience. All of us grown ups want our lives to mean something, to do something that touches another's life, to make a mark on this world before we leave it. Piper Grace is touching more lives than we could ever imagine with this docu-series. She renews the faith of the faithful, she whispers hope to the non-believer, she is an example of the power of prayer, and we are so proud to share her with you! She is leaving her mark, and what a mark it will be!

Our producers, Megan & J, with us on the first day we held Piper!

Producer Megan caught on camera!

Producer Megan, in blue scrubs, was the first to sport her "Lucky Chucks!"

Lucky Chucks for MONDAY!

Hello all!

Piper has had a solid successful week of narcotic weaning. She has been kept comfy, increased her feeds to 82mL per feed, and drumroll please...............has been moved to the step down unit!

The step down unit is for low support babies that are doing well enough to get their own room, instead of the constant hussle & bussle of the main NICU! What a great step in the right direction! We have our own room, bathroom, pumping space, and clothes closet! You go girl! She has daily visits with Occupational Therapy to work on bottle feed practice, daily play time with Physical Therapy, and a couple visits a week with Music Therapy! (I already asked...and tubas aren't allowed in the hospital. HA!)

Here's what's going on now: Matt and I had a care conference with Piper's neonatology team on Friday, to discuss our plan of action for her immediate future. The consensus is that our next step is getting Piper a G-tube placed. A gastric tube is a tiny port placed in her belly where we can pump a feed into. At first, you may think this is because Piper has failed at eating by bottle, but upon contemplation, here's why this is a GOOD THING:

• Gets the nose feeding tube out of her throat, allowing for less gagging/better bottle practice
• Bottle feeds, though doing OK, will take weeks for her to learn to complete a days worth of meals. 
• Placing a G-tube will take the above weeks away, and allows her a quicker home coming!
• Bottle feeds could then be practiced at home with no added pressure!
• Post cleft lip surgery in a couple months, G-tube will take feeding pressure off of mom again, as Piper's new lip recovers!

Did you catch that bullet up there that said "home coming?" YEP, you read correctly! After we place Piper's G-tube, she is extremely close to coming home! The surgeons need 5 days of recovery from the G-tube procedure, and then it is up to her neonatal team to wean her oxygen/flow to an acceptable rate for home use! That's it. That's all we're waiting on. Holy Moly!

Piper's neonatal team has not been aggressively weaning her nose oxygen/flow these past couple of weeks, knowing that she will have to be intubated again to undergo this G-tube procedure. She will be watched very very closely after surgery to decide on a safe time to extubate her fragile lungs. She could be extubated a few hours after surgery, OR she may take a few days to slowly wean the vent, then extubate. We do not want to push or stress those little lungs! (So please don't worry, if you happen to see a picture with a new tube in her throat. Just a post-surgery necessity.) Please pray that the time she spends intubated is short, so we can get the ball rolling again with weaning her to her nose cannula!

Once recovered and back on her nose cannula, docs will begin to wean down those oxygen settings, until they feel she's ready to come home. Ready for this? Piper being home by Halloween is a huge, realistic possibility! Whoa, baby! We know we are on her schedule, and little things could cause tiny backslides, but we are so close to her being home ready. 

Frankly, this is a post I never knew I'd write. With Piper's original life prognosis, and her subsequent NICU stay, we have been very careful with our emotions. We've had hope, but the discussion of home was only very carefully had in private. Now, we are having real life meetings about it, AND IT WILL HAPPEN! What an amazing miracle!

So people, strap up those LUCKY CHUCKS for tomorrow's G-tube surgery, Monday, Sept. 29th at 1pm!

We will keep you posted on her progress once Matt and I get home and settled from a day at the hospital. I've listed some specific prayer requests below:

• G-tube surgeons to have easy breezy procedure
• Piper recovers well and has limited time being intubated
• Docs find a great balance of milk nutrition/feeding rate once G-tube is in
• OT goes great after G-tube is in
• Narcotics weaning completes without incident
• Post surgery - oxygen weaning goes smoothly for a home coming!

Thank you all for your continued happy thoughts and prayers. We are so appreciative of the help we have received and the love we are shown. I have a little something in the works for us to give back and pay it forward, and I will blog about it soon. I'm excited! Enjoy little missy's 7 week pictures below (6 days late!) 

Nose tubes, IV's & Pain Meds - Oh My!

Howdy!

First of all, HAPPY 6 WEEKS to Miss Piper Grace!
Time has been flying by as we watch this super girl thrive!

These past 2 weeks have been pretty chill with Miss Piper, but we've made quite a few steps forward in that time! For a couple weeks, docs have been weaning down the pressure settings in her CPAP nose cannula. The less force in pressure = the more Piper is doing on her own. This process also coincided with her neonatologists deciding to remove her pain med/sedation IV drips and switch to medicine by mouth (i.e.her nose feeding tube.)

With the above changes happening, staff took things slowly, as to not upset our little lady with lung changes as well as drug withdrawal. Slow moving is fine with us...we'd rather not have our little junkie out of sorts!

Removing the IV pain med/sedation drips means NO IV's! Not a single one! No ouchie in her arm, no ouchie in her leg, no ouchie on her noggin! NO IV's! Wow! This has allowed for better snuggles and movement while mom and dad hold Pipes. (For my nursing friends - Piper's meds for the last week have been morphine and ativan alternating every 3 hours by NG tube.)
*Side note: with this ativan making her sleeeeepy, I really haven't gotten a chance to try non-nutritive breast feeding. All in good time. *

Piper has increased her feedings to 72mL of breastmilk every 3 hours as well! Bigger feedings, along with some drug withdrawal as her med dosage changed, created a bit of a pukey situation for a couple of days...but Piper quickly adjusted and has been doing well not spitting up her meals & meds since. This was to be expected, and nurses have made sure she is keeping her weight up (or increasing!) One point for mommy - they have not had to fortify my breast milk with any formula for extra calories! (I must be a big boobin' deal!)

Over the weekend, Piper proved comfortable enough to not even need her CPAP nose cannula anymore. She has moved down to an even smaller nose cannula, with no positive pressure needed! This nose tube allows us even MORE movement freedom, as well as getting to see more of her face! (Less taping!) Her heart rate and oxygen saturations have held strong even down on this smallest cannula. YAY PIPES!

Plastics, aka the Cleft Team, consulted during rounds last week. They've tentatively made a plan to meet with us at 3mo to discuss cleft lip repair after we've already gone home. (This gives me a tiny assumption that we will be home before 3 mo???? Whhhhhaaaaat? Fingers crossed.) After lip repair, surgeons generally wait until 1yr of age to repair palate. That's all we know for now, and we'll know more when we meet up with them in an outpatient setting.

Remember when I said after weaning to smallest nose cannula, Piper would try eating by mouth?
Well, Occupational Therapy met with her today, and will continue daily, to train her on a special cleft palate bottle. This is a very patient, slow process, but she took in 8mL of bottled milk today by mouth, and that's a great start! This is the next big step in our coming home process. Staff must be confident that she can get her feedings in by breast or bottle before considering a home coming. Big big prayers about this, please! Physical therapy also came by and stretched with goober girl (she's a yogi already!) She was pretty worn out by the time we saw her at 5pm. It's hard work being awesome.

This week we will continue with bottle training and thriving on her new small nose tube. Also, docs have officially set a weaning schedule for pain meds and sedation that will start tomorrow, and continue until she is off those meds completely. Pray for her comfort during this time, and that she kicks drug withdrawals butt! You will already notice in pictures posted, that her alertness is much more apparent now that her sedation drips have been removed. Her big baby blues are sure loving watching her mobile, and checking out what mom and dad are doing!

That's about it for now! We'd love your prayers for continued comfort, great oxygen numbers, bottle feed success and for no icky germs sneaking into the NICU during this cold & flu season! Still can't believe I'm writing about Piper not having a breathing tube. Those lungies amaze me every day! Praise the Lord for all the successes we've celebrated thus far!

Piper's new nose cannula! Less tape pulling our eyeballs down!

Snuggle bunny

**Photos below courtesy of Children's Mercy Marketing/PR - THANK YOU STACIE!**

Our Komfy Kangaroo

Hi all!
Just a mini Piper update for the week. (Recap from last Friday: she no longer has her breathing tube and is currently on a CPAP nasal cannula.)

This week, staff has been able to wean down the pressure settings on Piper's CPAP, wean down morphine & versed sedation/pain meds, increase her feeding dosage to 38mL, and approve her for kangaroo care and non-nutritive momma feedings! She also had an great eye exam and is now breathing room air oxygen (no additional oxygen concentrations needed!) Her surgical incision, a horizontal line form her side to her belly button, looks fabulous and has healed nicely! We shall tell her about this battle scar one day, and beam with pride.

Kangaroo care? This is skin to skin time with your baby. Both mommies AND daddies can participate. This is great for healing, bonding and overall awesomeness! I got to kangaroo hold Piper for the first time this evening. The biggest change from regular holds? - I'm not as tense with tubes and lines by only holding her in the nook of my arm. They stripped Miss Pip to her diaper, me to my tank top, and we got some serious skin to skin snuggles. This is the first time I felt she wasn't breakable. She was my baby, lying on my chest, like babies do. She immediately burrowed her head into my chest and we experienced baby bliss for over an hour. I can't wait until it's daddy's turn!  One more way we can participate in her care and love on our precious girl.

Non-Nutritive Breast Feeding? This is a time for mommy and baby to bond, and practice latching and nursing before the real pressure of getting baby fed begins. Piper is still being fed breast milk through her NG (naso-gastric) tube, and will be until she weans down to a smaller nose cannula. In the meantime, they will have me pump beforehand, and Piper and I can get some practice in. This allows us to not be as tense during beginning feedings, not adding undo pressure to mom and baby if this shouldn't be successful. Piper was a bit too sleepy to try this evening, but I am sure excited for when we do! Cleft lip/palate babies need very specialized help with feedings by mouth, and this will be a great way for us to test out what is going to work for Piper before lip repair surgery. Essentially, breast feeding is a great option due to the fact that mom's pliable tissue can fill spaces a bottle can't - resulting in a successful latch. If this happens to not work, however, no harm no foul. We will just try specialized bottles, nose tubes, or even a tummy feeding port if necessary. This is down the road a couple weeks, so stay tuned! In short - yay for boob time! Girl Power!

So - what's next? A lot, it seems, but things are progressing so quickly with this child! Some future steps to begin adding to your prayer list are below:

• Weaning to a small nasal cannula and keep great stats with oxygen and breathing rates 
• Begin to breast and bottle feed successfully to maintain nutrients without IV help
• Gentle weaning off pain meds
• That a meeting with the cleft team is soon - plan established for repair 
• That a tiny assumption of coming home date is spoken about! YIKES!

As always, we are astonished at the love we have received, the help that's been offered, and the kindness of others during this time. Ya'll rock! Enjoy pics below of our kangaroo time, as well as our 4 week milestone!

 

Take a Deep Breath...

First thing's first.....
Notice anything about this picture?

8.29.2014 - VENT OUT!

Piper Grace Jarvis has decided she NO LONGER NEEDS A BREATHING TUBE!!!!!!!!!!!!!!

Needless to say, Matt and I have had a super duper fabulously awesome week. I told you I'd update on Piper's stats; so I've listed our hurdles hopped below. This girl is an expert hurdler already!

• Beginning of the week, Piper weaned off her oscillating vent and went to a traditional vent. This told us her lungs were ready for the next step!
• On traditional vent breathing tube, Matt and I were able to hold Piper for the first time! Be it at birth, or at 3 weeks, 2 days - the feeling is glorious!
• The same day we held her, they introduced her tummy to mommy's milk. (5 mL at a time.) A very proud moment for mommy!
• Yesterday - Piper had the hiccups! How's that for a functioning diaphragm!!!!
• Last night - they turned her breathing tube settings to "AUTO" - allowing Piper to control the breathing help she received from the machine. Her oxygen and CO2 numbers remained  perfectly stable during this time, leading doctor's to believe she was ready for....extubation!
• Last night - she made a tiny tiny poo! Silly fact, but this means her tummy is processing milk and they can continue feeding her more and more now that her anatomy proves functional.
• TODAY at 2pm - Docs removed Piper's breathing tube completely!!!! HOLY MOLY!!!!!!!!!

Fighting Piper Grace Jarvis now has ZERO tubes in her mouth helping her breathe! She has switched over to a positive pressure nasal cannula, and that's it. She has had fabulous blood gas results all day and is thriving with no breathing tube. She's also allowed her nurses to double her mommy milk feedings to 10mL! This child never ceases to amaze us; and if you can't tell with all my exclamation points....we are excited!

She is moved into a real baby bed, with a fun mobile to gaze at, weaned off some pain meds, and is now allowed to wear baby clothes! (Be still my heart!) I held my baby today, looked at Matt, and asked "have we done this?" We are getting closer and closer every milestone to being able to say that Piper has kicked this in the butt. We are in awe. Docs are in awe. Everyone that has come into contact with Piper Grace is in awe. A month ago, I had admitted to opening my arms, submitting the future of my unborn child to the mercy of our Lord. I agreed to do the best I could with the time He chose to give us. Today, I again open my arms to Him, this time to reach up and praise. My fingers can't reach high enough to show my gratitude. 

We now have no clue on time frame of the "coming home" chat. Piper will have to switch to breast feeding, bottle feeding and be successful maintaining her weight, maybe have her cleft lip fixed and her heart checked out again before coming home. BUT - the "coming home" discussion is on the table ya'll...and THAT is a miracle. I cannot comprehend how far we've come. I am in awe sitting here typing. Awe. 

Holding our Piper today, talking with Matt, we discussed Piper's story not being our own. She is doing so well, not as a reward of being faithful, but we feel she is being used to tell ALL OF US that the power of prayer is alive and well. That good things do happen. That coming together to support each other in Christ has amazing consequences. We cannot thank you enough for the support. 

As we patiently await Piper's next step, be it more milk at feeding times, more poo in a diaper, or less oxygen in her nose, please pray with us that she stays on this positive road to recovery. Pray that we learn answers about her cleft repair soon, and we continue to glorify God in our story. Thank you all. 

Our Sweetest Update Yet...

You know,
Sometimes there aren't any words good enough. So today, I will not choose any words to describe our update, there aren't any.

I will post more on Piper's great stats later. For now, we are choosing to BE STILL.

8.27.14 - First time holding our girl