Sweet Sweet Piper Grace

What a difficult time I'm having putting feelings into words. Bear with me.

Last blog, I spoke about the frustration of Piper's inability to wean off Nitric Oxide, having Pulmonary Hypertension (PPHN) flare ups, and starting the new med, Flolan.  Since then, we have quietly geared up our mental and emotional preparations if our final push to control her ailments failed. 

About 6 weeks ago, Matt and I had a very intense and uncomfortable meeting with Piper's team. A recent echo had shown absolutely NO positive progress in her pulmonary pressure control, and numerous attempts at trial-ing off nitric oxide had been in vain. The last resort medication...hadn't worked. Going home...officially off the table. Her body...never meant to thrive for this long. We had prepared for this once before, 10 months ago, but this conclusion still slayed me. 

The meeting then turned to the conversation of Piper's comfort. What would the rest of Piper's days look like, and what could we do for her to be happy during that time? Our answer...stop bugging her. Stop pushing her lungs to go home when they never will, stop weaning narcotics, stop pushing her tired body. Quiet her storm, and let her live without a care, until she was ready to let go. 

So that's what we did. We stopped stressing Piper out with external stimuli....and the result is what YOU guys have seen on social media these last few weeks. Piper chill. Piper smiling. Piper silly. Piper comfortable. 

While enjoying these last few weeks of joy with Piper, Matt and I knew that, with her pulmonary pressures as bad as they were, that eventually we would get a cue from her that her body was worn out. Her heart would be too tired to pump blood to lungs, too tired to oxygenate cells efficiently, and too tired to stay awake and live a happy life. Matt and I agreed to watch very closely for her cues, knowing that we did not want Piper to suffer and panic and her body shut down. 

I'm going to be honest, having this knowledge and just waiting for something scary to happen has been exhausting. Posting happy pictures of our girls, being thankful and happy for the time we have, and dodging the "Piper homecoming" questions as best as we could while staying positive until we were ready to share this part of our journey...has hurt my heart. I wanted to prepare you too. Was I prepared? Were we prepared? I'd like to hope so...but all I could do was wait, and be still, and love on Piper Grace. 

This Wednesday, well actually Thursday at 1:00am, we got a scary hospital call. Piper was not agitated, but her oxygen saturations were very low and not coming up. I drove up to the hospital to hold her, knowing full well, that this could be "the time" we were preparing for. Matt quickly joined me, thanks to my MIL racing up to help with Tal. We sat and held and comforted her...and her oxygen sats slowly increased to acceptable levels. With her no longer critical, Matt and I drove home at 5:00am Thursday morning to get some rest, both of us knowing that that episode was Piper's final cue. (Excuse my language) We took that cue: "Get your shit together. Get your mind right. Make the calls. It's time." 

Thursday afternoon, we sat and chilled with Piper Grace, surrounded by a dozen or so of her favorite NICU team members. We loved on her, chatted with her, thanked her for her time here with us. 

I was holding my Piper Grace, with Matthew at my shoulder, when she left us at 8:04 pm Thursday, June 11th. Our hearts are utterly shattered. Dozens of nurses lined the hallway outside of her pod, and we sent her out with so much love that it was palpable. 

Writing this for you is difficult, because I struggle with wanting Piper's story to remain positive. We did not lose this battle, this was not a tragedy, she didn't fight for nothing. I spent the weeks up till now preparing my thoughts for this exact moment...

Who says you have to live to 86 to have a full life and leave a mark on this world? Piper has reached so many in her 10 short months, more than I could imagine, more than we will ever know; and for that, I am so proud. 

Another thought: everyone's prayers are different. If your prayers for miraculous healing went unanswered, it does not mean God was not involved. Ask yourself: what has Piper taught me? Can you imagine the infinite answers ranging from tiny to huge? Thank you, Piper Grace, for teaching us. 

Piper taught docs and nurses about CDH, PPHN, and the roller coaster of extended hospital stays. Piper taught us to praise God as she lived longer than 5 minutes. Piper taught us to have hope for a positive outcome. Piper taught us to be grateful for status quo. Piper taught us to find your happy everyday. Piper taught us to LOVE FRICKIN HARD, and appreciate your time with those you love. 

My final lesson: in difficult times, believers and non believers alike tend to use the phrase, "everything happens for a reason," and some people might take offense to that...but I don't. I think the trick to that phrase is being okay with not knowing that reason. Piper's journey could lead to the salvation of others, it could lead to a new nursing career for momma. It could have been to show this hard world that there's still some amazing good to be shared. It could be that the people we met along this journey will be in our lives forever. The beauty and freedom if this?...I don't need to know the reason. I'm ok with that. 

I hope as Matt and I walk through this life together, that we run into friends, acquaintances, and strangers that shed light on what Piper's story has done for them. THAT is the reason we shared, and we will always be so grateful to have shared her with you. 

Please surround us with your love and light and prayer as we navigate grieving for Piper. This has been a loooooong road, and we are weary, but she is whole. Praise Him for his ultimatel healing and loving arms that now hold our sweet girl. Please remember her goofy gappy smile, and hold her in your heart always...I know we will. 

Thank you, Piper Grace, for allowing us to love you. 

* We will be having a private memorial for Pipes. If you feel inclined, we'd love for you to contribute blankets to the Grace Blanket Drive (email me) or give to Children's Mercy Hospital of Kansas City in Piper's memory. *

** Pics below are a window into her last day with us, surrounded by the ones who loved her and cared for her most. CMH Team - WE LOVE YOU ALL. Thank y'all for being with us yesterday. **

ONE LAST Bday Hat Pic: 44 weeks 4 days - with her primary nurses Allison, Jen, Ally, Ashley & Marcela. (missing in photo: Katy & Claire)

The farewell team: Dr. Jeni, Delores, Allison, Marcela, Ally, Robyn, Tess & Ashley

Piper Grace Jarvis
8.4.14 - 6.11.15

Wounds & Battle Scars

I have resisted blogging lately, because frankly, I have no idea where to begin. I have realized that I wait to blog when I have some exciting news, some Piper progress to share.
Right now, I don't have any, and I've decided that's okay too.

I've been thinking a lot about our journey thus far, and the other day, while looking at Piper, I thought, "Wow, what a story she will tell about these scars." I sat there with her, and vowed to be the mom who celebrates her scars so she will wear them with honor and never be afraid to share her story with others. Battle Scars are a badge of honor, a sometimes physical testimony of what we have survived and overcome. Scars imply that the wound has healed...and you've lived to tell about it.

Me? Right now, I wish I had scars to show.   I don't.
I'd give ANYTHING for this journey to finish, heal, and scar. Currently, I am wounded. As a mom, wife, daughter & friend...wounded. My soul was cut open the day I gave birth to Piper Grace. Faith, Hope & positive progress allows my wounds to scab over and the pain to subside; but fear, reality and problems along the way tear away at my healing; and leave me raw once again.

This journey has been such a roller coaster. Piper has made such progress, and when she does we celebrate and hope! She's also had her fair share of setbacks, which hit us hard with the reality of having a medically fragile child.

With Piper trached, the journey towards home requires a seemingly short list of accomplishments:
  *Wean off Nitric Oxide
  * Full Feeds
  * Wean narcotics

We gear up to tackle this list...and realize that Piper Grace is having a terribly hard time coming off Nitric Oxide. We have actually switched to a pretty intense drug called Flolan, to treat her pulmonary hypertension and help wean her off nitric. Her recent echoes have shown great progress in her pulmonary pressures!
This progress should result in a transition to not needing the nitric gas. However, it has not, and Piper's team has no idea why. We have tried and tried and tried to get her off this nitric, and while she can handle some time without it...she cannot give it up completely.

There is no data that explains why she can have forward progress in most of her body systems, but not be able to wean off this gas. This is worrisome. So much so that a couple weeks ago, we met with Piper's team to discuss her nitric dependency. Her team worries that, if her body will not come off of nitric oxide, we are at a standstill, and any other progress with Piper is....icky word......futile. Progress with feeds, fluid management, and narcotics is pointless if her body cannot survive without nitric. It cannot come home with us. It led to the meeting's main question: Is this Piper's body telling us that her systems are not compatible with life? Dagger. Heart. Wound.

I've spent the last week in serious contemplation. Wondering, asking, begging to know if this story is our triumph of healing, or our testimony of having grace while losing this child. Did we fight this long and get this far to lose this battle? I know NONE of these answers, and I need to be okay with that.

All this time, we have looked to Piper first when making decisions about her care, and we will continue to do so. Matt and I have not felt that Piper is done fighting. She is progressing with managed PPHN, smiling, chatting, and developing. We see her. We feel her. We, as her parents, will know when her fight is finished. We are not giving up on Pipes!

One of many things I've learned from this NICU journey, is that I don't have to pick an emotion.
I can be pleased with progress...while disappointed in our nitric status.
I can hope this new med works wonders...and fear that we can still lose her.
I can love Piper through her progress and her setbacks. I choose ALL the emotions!

In summary, things are at a standstill, which is scary...but WE ARE NOT DONE FIGHTING!
One day, regardless if how this story ends, I will wear this journey's scar as a badge of honor, and share with all who will listen, the things that Piper has taught me.


Switching to the extreme present: Tallan Hope has been a silly firecracker lately! With her 3rd birthday, and CDH Night Event, she has had plenty of family time to ham it up. She has also gotten to go visit her sweet baby sister!
We can all learn a thing or two from watching Tal and Pipes interact with one another.

Tallan did not wonder why Piper's cleft lip wasn't fixed yet. She did not worry about the extra IV line. She didn't ask how long her last nitric trial off was or the predicted homecoming date. She didn't even ask what her trach was. To Tallan, Piper is her sister, just the way she is...and that is enough. Tallan doesn't care how Piper eats or breathes. Tallan loves that she has a sister that holds her hand, and sleeps when she holds her...and that is enough. To Tallan, Piper is not a diagnosis, a list of ailments to overcome...Piper is enough.

Please pray that Miss Pipes will decide to kick nitric oxide's butt soon. That alone, would change her prognosis tremendously! Pray for Matt and I as we juggle our frustration of this standstill with our pride of her other progresses. Please pray that little Pipes keeps truckin' along, smiling, and letting us know that she's still here fighting. We are all wounded...but we are not done.

Science Lessons & Life Lessons

Holy Frozen Frijoles Y'all!
It has been a month since I have blogged and I need to get you up to speed.

I've tried, in vain, to get more sleep this past month; which meant foregoing late night blogging. A whole lotta good that did me! I haven't blogged AND I have pretty under-eye circles. Glamorous.


The last time I checked in with you medically, Piper was undergoing a tummy procedure to correct a feeding problem. That procedure with Dr. Iqbal went smoothly, and Piper is now successfully being fed through her new GJ (gastric - jejunum) feeding tube. This tube goes the extra extra step in protecting her lungs from baby puke/aspirating, by taking her food straight into her small intestine, bypassing the stomach all together.

Lungs? Home? When? How much longer? - My word, these questions plague just about every conversation we have outside of the hospital, and I will do my best to clarify our home course shortly.

SCIENCE LESSON #1 - What is persistent pulmonary hypertension (PPHN) & what does this mean for Piper?

Infants with CDH also commonly have a very serious and potentially life-threatening problem called pulmonary hypertension. Pulmonary hypertension happens because the blood vessels in the lungs are not formed properly. In babies with CDH, the blood vessels often fail to relax normally. In addition, babies with CDH have an inadequate number of blood vessels to carry blood into the lungs. Therefore, the lungs receive inadequate blood flow which restricts the amount of oxygen delivered to the rest of the body. Further, because the heart has to work extra hard to pump blood through the tiny blood vessels in the lungs, it can eventually begin to fatigue.

PPHN can be treated in the NICU with multiple ways to help alleviate these pressures:

• Medications
• Proper Ventilation (TRACH in Piper's case)
• Nitric Oxide gas
• TIME for lung disease to heal = PPHN alleviating itself

Piper Grace is receiving ALL of the above, and her PPHN, which was her most life threatening symptom at birth, has slowly come down to a more manageable state. Out of all treatments, TIME with healthy lungs is pretty much the only thing Piper needs at this point (hence the decision to do her trach procedure.)

SCIENCE LESSON #2 - Pulmonary Hypertension can come into crisis when exacerbated!

On Piper's slow road to healing and home, we have ran into a couple big set backs that scared the living poo out of us! Piper getting sick in November, and again in January is enough to throw her tiny body back into a life and death fight. 

WHY? 

ANY little stress stimuli can exacerbate PPHN and shut Piper's body down for good. Game over, baby too sick, body too tired, done. Scary situation after fighting so hard for 6 months, right? 

Things like a tummy bug, respiratory virus, aspirating pneumonia, teething, & surgery can trigger PPHN crisis, and we are constantly on high alert for this stimuli. 

We are so so so fortunate to have awesome nurses and docs that are QUICK to recognize Piper's signs of stress and treat her symptoms before her body becomes too tired. PPHN is always in the background on this journey towards home...and TIME is the only treatment that will eventually take this scary term out of Piper's equation. 

WHEW! Did ya get all that? You now have your honorary doctorate from reading all that mumbo jumbo! Hopefully that answers the question of, if Piper seems completely healthy and doing well, why our team is extra careful and slow with changing things that could stimulate crisis. 

That brings me to LIFE LESSONS. 

Matt and I have been so proud of Piper's progress and, knowing the medical steps to get to home, can't help but get a bit antsy as we near the final stages of hospitalization. After months of improvement, and positive changes, Piper got a bit sick/out of sorts around mid-January with PPHN crisis. This THREW ME for a loop, and I was taken aback by my emotion.

I realized in one NICU visit, that no matter how great things are going, we are NOT out of the woods. I had let my mommy emotional guard down, I had buckled into trach care training and home going logistical talk, and then was slapped in the face by this (in the scope of things) minor setback. I lost it. God reminds me that we are on his time, Piper's time...BE STILL, woman! 

I look back to July 2014, at my words of preparation for birthing and losing Piper. We were as emotionally prepared as we could be, and told ourselves, every minute - every hour - every day that Piper lived was a gift from God to cherish Piper before she died. 

Along the way...Piper lived. Piper thrived. Piper became ours. The time we said we we'd feel blessed by, turned into months, and we began to believe she would live. She was ours. Ours to take for granted. To selfishly be frustrated at timing was taking Piper's astonishing fight for life for granted. 

January's setback reminded me of my earlier preparations, and why impatience is something I cannot afford to grovel with. Frustration at our pace of progress should not be tolerated. I was prepared to lose this child....and I didn't. I have her. She will live. I will be frickin thankful for these woods! (Cue that Taylor Swift song!)

That being said, we have had a great February with Miss Piper. She has weaned on her trach vent settings and pain meds, resumed feeds after being sick, and her echos have showed great improvement in her pulmonary pressures! If you'd like to see some more medical speak, here's what we are thinking for Piper's coming home to-do list:

• Reach full feed amount
• Get OFF Nitric Oxide (NO) (for my nurse pals: she's on 0.5ppm! Come on, Pipes! Give it up!)
• Once NO is OFF, she will do about 1 month of home vent practice before discharge
• Wean narcotics to home manageable state

That's it. Seems like a small list, right? Only Piper can set her pace on completion of these tasks, and we will gladly BE STILL and wait. Silly goose like to keep us guessing!

Along the way, plastics might decide when they're willing to do her cleft lip repair...AND cardio may decide she's stable enough to patch her heart holes. Geeze - I'll save those for another blog. 

We are happy to report that Piper is the happiest girl in the NICU, smiles at everyone, and is the D Pod Hall monitor as she sits in her swing and watches everyone walk by. She has a keen fashion sense, likes the one shoulder look, and is a whopping 20.2 lbs! She has been doing great sitting up with PT, grabbing and tracking with OT, and singing (let's face it she's an alto) with Music Therapy! Have I mentioned how awesome Children's Mercy is? Awesome!

PRAYER THIS WEEK - Get that darn Nitric Oxide weaned OFF!!!!! That would be a huge step, and is the only thing keeping Piper from switching to the vent she'll come home on. 

We love you all, and are so glad to still have your support and prayers. Y'all are our proverbial "flashlights" for this long journey through the woods. What brightness each of you bring. We are so grateful.  

  

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!

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!**