On this day...

A year ago, on this day, Piper Grace left this earth.  I was aching, body and soul. The "worst case" had finally caught us, our fears realized, our grief began...a year ago today.  The drive home from the hospital the night Piper died, I remember being quiet. Silent with a million questions running through my mind.   "What do we do now?"   "Did that just happen?"   "Will we be ok?"   "How much worse will this hurt?"   "How long? How long will this hurt?" Piper's entire life, starting in utero, we planned to lose her. We planned, not knowing the day or hour, but we hoped, we loved her, celebrated her, learned from her and still planned for her to leave us. We prepared our hearts for the day they would break, not knowing how shattered we would feel. Shattered. What a perfect word for how her departure felt.  Here I sit, a year later, shattered still - but glued together with the love and support Matt and I have received. Glued together by the awe we have in how Piper's story has touched others. Thank you, for loving us this year, for remembering our sweet girl, for helping us through. I truly believe our family was touched by God's Grace during this time. When anyone said "I can't even imagine how you cope..." the answer is GRACE. How fitting, right? Grace. Yes a year has passed, we have lived and loved and learned some things. I look back and am proud of our strength. Our hearts have endured turmoil, and yet we survived. It's allowed me to view life's struggles with a different lens. There's not much I fear I can't handle. My heart can handle it. Bring it on, life! Thanks, Pipes, for teaching us to stress less, and conquer more! I'm proud of my marriage. I've never been more grateful that I married by best friend. In the midst of our NICU journey, the man next to me wasn't just my husband of 10 years. As my heart shattered, I turned to the 15 year old boy that was my best friend. He held me up. He knew my strength and reminded me of it. He wiped my tears, validated our decisions, and was our rock. Matthew Jarvis, I love you as my husband, but you, as my life long friend, was what got us through. I'm so proud of us.  I'm grateful for the teaching moments Piper's life and death has afforded me. Tallan Hope has been so receptive to chats about death, Heaven, God, Jesus; and I am thankful for her frank and curious mind.  I've spoken to a few groups, strangers, starbucks patrons, anyone really...about Piper Grace. The biggest lesson I've learned this year, is that I DO NOT HAVE TO KNOW how Piper will touch others' lives. I am here merely to share her story, and watch as she affects so many people in so many different ways. I think many people ask "why did this have to happen?" or the dreaded "everything happens for a reason," and I sigh and say that I do not need to know why. There's no ONE why, right? Think of how Piper's life has affected you. There are a million different ways she's touched you all, and it's my single most favorite thing to hear about.  Yes, Piper Grace Jarvis died a year ago, on this day. Matt and I kind of made a point not to build up expectations for this day. No rehearsal of emotions we assumed we'd have. No grave site to tend to. No balloons to release. We chose to acknowledge this day quietly as a family, and contemplate how far we've come in this past year.  A year ago, this day sucked; but the day she left us seems insignificant when compared to the day she arrived, the days we loved her, the days she taught us. I will be grateful for ALL the days I had with Piper Grace, even this one.  (Pics following are of our final hours with Piper.)

 

Sharing Truth

People say that I am brave, but I'm not.
Truth is, I'm barely hanging on...

The above statement couldn't be more true in this moment. Like I've said before, I am so touched by music on this journey, and if you haven't listened to I Will Carry You, by Selah, please take a few minutes to do that. It is the most perfect 4 minutes of a song I feel tells our story so well. Go ahead...I'll wait.

When I sit down to blog, I've usually had a topic in mind for a few weeks. I've rolled it around in my head, considered its message, polished my thoughts and usually have processed the feelings involved before even sitting to type. Bear with me...because tonight is no such blog.

To share my heart in real time is a very vulnerable position for me; but today, in the span of about 10 minutes, I was flooded with emotions that I need to get out. About an hour ago, I shared a couple pictures of Pipes. Pictures I hadn't seen, but when I look at them, I could immediately tell you what was going on in our NICU journey when they were taken....and it's not what you think. You can "like" and comment about that sweet sweet baby snuggling her lovies; but I know the truth behind the pictures.

What you don't know: is how much I had to edit these pictures to feel ok to post them. The unedited pictures brought up a slew of memories of where we were last year...quietly suffering through the hardest time of our life. You see, my grief didn't start the day Piper Grace died. I have actually been pretty proud that I've been able to live, hold my head up, and give back the way we have in the months since June 2015. 

Tonight reminded me that my grief, the dirty ugly shitty grief that sneaks up on you and grabs your throat...reminds you that life isn't normal...THAT grief - started this same time last year. 

Tonight I realized that my journey with grief may hit a tough tough patch...starting now. I grieve the conversations we had to make. I grieve the feeling of losing a battle while my child was still alive, I grieve this time of year because of the word "de-escalation."

Last year, this is when it hit the fan. When Piper cued us in that her journey on Earth may not have meant to be long. When we had to be honest with ourselves, and agree that we needed to be ok with letting her say goodbye. This time of year sucks. March. April. May. All months we struggled with grief as we watched poor Pipes get bluer and bluer. We prayed that her time here wasn't for nothing. We let go of our selfish need to keep her here for us. This time last year, we gave it to God and Pipes - we relinquished control, we let her be...and waited for her farewell. 

If you have ever had to do that...it's the suckiest thing ever, waiting for someone to exit this world, knowing it's best for them...but your heart is breaking at the thought of it. These pictures today, reminded me of my loss of control. My start of the ugly grief...and that scary wait.

Here is my sweet sweet baby, last March. UNEDITED. The difference in her color might not seem too vast for you, but they remind me of the end of our Earthly fight; and regardless of the good that has come of this, it's still damn hard to remember coming to the realization that her body was too tired. Sweet, peaceful, tired Pipes...teaching us.

               

I'm really unsure that this post even has a point, other than to be real and share a struggle a fellow mom might be having. If I'm making no sense, I apologize. (Not really, I make perfect sense to myself, so who cares! HA!)

Maybe the point is: it's 100% OK to NOT be OK! Let's be honest with ourselves, kind to our fragile hearts and minds, and remember that any journey in this life is NOT on a straight road.
To be clear, my effing journey is on a dirt road, covered in cow poop and pot holes, with blind curves and tummy turning hills...but I'm ok with that. Word.

Just a Drop in the Bucket...

Woo Hoooooo!  Check out the fancy new blog design! A HUGE thank you goes out to Jodie Gerling, for coming to my rescue and sprucing things up for me! You rock my face right off, woman!
***
Have I mentioned that I've been getting my head shrunk? Ain't no shame in my game. Since February 2015, while Piper was still alive, I've been going to a therapist. I love to talk...I love to talk about myself...I love therapy. 
The result: my overly egotistic self now thinks I'm a psychologist. (Duh!)  In all seriousness though, this has really helped me dig into the how and why I want to grieve, give back, and tap into coping skills while incorporating my faith in this recovery process. 
Something I've been mulling over for a while now, is me getting tinges of anxiety and feeling overwhelmed. I've analyzed, then OVERanalyzed why; and have come to this conclusion: (I'm billing you for this session later.) I get SO excited to help, to make a difference, to give back, to have Piper be remembered...that I regress into the thoughts that everything I can do is too small. I look at this big ole' world and have the humbling realization that I am just a mere drop in the bucket. Just a small tiny blanket drive lady, trying to make a difference, but just a drop in the bucket that is children's hospital philanthropy. 
Blankets, hospital committees, NICU meals, bereavement bath products...does it make a difference? Have you ever had thoughts like this? "Am I even making a difference?"
This is when I have to stop. Slow my roll, and tell myself, "Hell YES it does!"  Now, all my psychotherapy comes in handy when I am so excited to share with you my thoughts on giving back... Do NOT let being, "just" a drop in the bucket, extinguish your flame! Your drop means something to someone. Your light has a purpose. Hold that light out and shine the way, baby! 
Matt and I have had discussions recently about our faith in God as youngsters. We were raised as Christians, and were pretty darn boring teens. No crazy fall to rise from, no huge mistakes, prude - boring teens. As a Christian, and a quiet one at that, this led me to feel like I had no real profound testimony to share with others. I always had God's light within my heart, and carried it with me through this life. 
What Piper has done, is allow me to take my light, extend my arms, and hold it out for all to see. Piper's life has given us a reason to shine that light for others, regardless of how big or small the audience. My drop in the bucket is awesome, my flame will be bright, and I will shine it for you, Pipes!
While compiling my words for this post, a song from childhood came to mind that I'd love for you to hear. It's perfect for this topic. (The YouTube video might be corny, but the words touch my heart.) I urge you to give it a listen, and think about how you use your light.  Go Light Your World ***
NOW, it's time for another PIPES shirt order!!!!! Some of you missed the last order, and we are excited to offer these again! T-shirt money goes straight into the Grace Blanket account and has been used in these ways thus far:
   * Blanket purchases to stockpile for August hospital delivery    * Bath product purchase for NICU bereavement team    * Website domain purchase    * Non-profit filing process    * NICU family meal event (we fed over 50 parents this January!)    * Footprint keepsake supplies for NICU nurses to create for families    * Blankets blankets blankets for NICU/PICU babies!
In short - Y'ALL ROCK. This is YOU shining your light! Thank you so so much!
Here are shirt ordering specifics! Call, text and email me ASAP!  817.319.8116 or tarajarvis13@gmail.com (yes, shirt prices are increased from last time...I spent waaaay more on tax & shipping than I bargained for!)
* $18 - Adult Sizes S - 3X * $12 - Child Sizes XS - XL * $10 - Baby Onesies NB - 24mo
When you call, text or email, I need from you:
* how many & what size * your shipping address * I can take cc payment over speaker phone, you mail a check, or meet me with cash! * your order isn't recorded until payment received. Emailing me doesn't ensure you get a  
  shirt...money talks, baby!  * I'll text or email you our address for check mailing. (Just not posting it here, duh!) * Checks payable to: Grace Blankets or Tara Jarvis DBA Grace Blankets 
SHIRT ORDERS/PAYMENT DUE BY MARCH 5th! (2+ weeks)
Questions? Call me. Text me. Email me. 
Check out all these fine folks sporting their Pipes shirts! How amazing! What a great way to get the word out about our blanket drive cause, CDH awareness, and remember such an awesome person!
We love you all! Can't wait to talk soon! #PipersPod

 

 

 

Realizing "Everyone's Here!" will never be a thing. Ever.

I've had this blog on my mind for a while now; and like always, I've had to swirl it around in my head for weeks before actually typing. I miss you guys! Ok, here goes.

It has been 5 months of navigating this grief thing. The weird path that has no directions, instructions, or ANY clearly marked route for that matter. Screw that. Screw grief.

I've realized, that I, like any momma thrust into the loss of a child, am blazing my own unique trail through the grief process. My path has looked a little bit like this:

   * Suck it up buttercup days. I rock, I'm cool, I got this.
   * Sleep all day...I'm a terrible mom....hours of cartoons.
   * I will make Piper's life mean something! "Let's sell Tshirts!!!!"
   * I'm uplifted by love and support, always.
   * I miss the scary place. I miss the hospital. I miss those people.
   * I'm awesome! "Let's create a non-profit!" "Let's meet Paul Rudd!"
   * I can look through pictures...I still can't watch videos. This sucks.
   * Xanax and wine?...Don't mind if I do! Cheers!
   * I share Piper's story multiple times a day. I am meant to be her storyteller.
   * I love doing family things we didn't get to do last year. Am I happy or guilty?
   (REPEAT. REPEAT. REPEAT.)

Grief is no joke. Most days I am happy and sarcastic and silly, and I have made it a point to TRY to not feel guilty about that. Others, though, I am stopped dead in my tracks by missing Pipes. Little things will sneak up on me, like the smell of Noodle & Boo lotion, a picture a nurse texts me, or seeing a specific blanket. The sneaky things stab my heart a little; but I wouldn't have it any other way.

The latest little sneak up of emotion happened when my brother, aka "Uncle Whiskey," made it home from Iraq. I had been in a text loop with my mom all day, being updated on his ETA. His homecoming. I breezed through the day, happy for mom & dad to be able to see him, excited for his fiance to get him back home! Excitement - the emotion of the day. Easy.


It was the text "His plane just landed!" that caused a stir of emotions I didn't see coming. My excitement for my brother being home, sneakily morphed into a dumping of grief emotions. I realized, all day, that I was so happy for our family to all be on American soil again...that everyone was home and accounted for. That night, I discovered that my heart didn't feel the same way. Someone will always be missing. And it will always hurt.

I sobbed the night Drew came home. I wished I could be there to welcome him. I grieved at remembering all we went through during his deployment. All he missed, the good and the bad, came roaring back. I had grieved for Piper with our family; but I hadn't gotten to grieve Piper with my brother...and my body felt that on a primal level. So. darn. weird.

For those who don't know: Drew had been on a night watch when he got the news that Piper was cue-ing her exit from this earth. He was allowed to stop, call me, and was the last family member I spoke with just minutes before Piper passed. I was heartbroken for him to be so far away. He was heartbroken for me to be to saying goodbye to my baby. Two hearts, a world away from each other, both shattered by her tiny sweet soul.

With the holiday season upon us, I am reminded of the way I felt when Drew came home. With family living their lives miles apart, we rejoice in the fact that we get to spend these holidays together, but no, we are NOT all here and accounted for. There's a teeny tiny person that will always be missing.

Piper has scarred by heart.
We will always notice that she is the little heart tug we feel when celebrating as a family, and I choose to be thankful for that empty feeling in my stomach. She made her mark on all of us, we miss her, and there will always be a void.

For those who have lost a child, or a loved one recently....I see you. I acknowledge their absence. I know they are missing from your celebration.

It hurts like hell; but I love that we've loved so much.

Last year, I smiled through Thanksgiving lunch, then headed to the hospital to see Pipes. We were all "here," just not all at home.

This year, I will be still, look around the table, and be thankful to celebrate with family. I will be thankful that, although not what we expected, this year, Piper Grace is home.

A Quick Note for Tal...

I'm up at 4am, my mind too full of thoughts. In my sleepless state, one question keeps running over and over in my head. Will you remember this?

Are you too little? Will you remember, Tallan?

Will you remember our silly drives to the hospital, and you knowing when we were getting close?
Will you remember calling her Pipes, and giving her every toy in the basket?
Will you remember our chats, our lists of things we planned to do with your sister?

Will you remember Mom & Dad's fear? Our sadness? Our hope? Our joy?
Will you remember holding your sister and not having a care in the world about her tubes?
Will you remember, Tal?

Will you remember crying with me when I was sad about Pipes?
Will you remember giving me a reason to get out of bed?
Will you remember making me a better mom? A mom who taught her child to pray, about Jesus, about Heaven?

The last year of our lives has been full of tears, and love and heartache...and Tallan, I hope and pray you remember. Remember how our family stuck together. How you were my shining light to cling to...my joy...my heart.

I vow to remind you. I will remind you, not just of your sweet sister, Piper; but I will remind you of how amazing you were this year. I vow to always remind you of the miracle that you are to me, my healing heart, my soul. I'll always remind you, babe.

You woke up tonight (well, morning) at 3:45am upset, and told me you missed Pipey. We sat and snuggled and prayed to Jesus and Piper in your heart. I had tears rolling down my face, some from grief, but most from overwhelming pride and love for the sweet smart person that you are. You make me a better me. I love you, Tallan Hope, and I will do my best to always help you remember.

Love,
Mom

Grace Blanket Drive is up and running!

Thank you all so much for loving us through this past week after saying goodbye to Piper. We are overwhelmed with the kindness of others who have surrounded us with prayer and compassion as we navigate through this loss. This blog is pretty "down to business," so I will save my sappy words for another post, on another day.

A couple months ago, I had been contemplating having our Grace Blanket Drive take place in August, Piper's birth month. The outpouring of people wanting to give back in Piper's memory has led me to believe that that is  FABULOUS IDEA! Consider it done.

We will officially be accepting blanket donations to gift to the NICU at Piper's amazing Children's Mercy Hospital, here in KC. We cannot express in words, how grateful we are for this sweet place. Let's blanket them with love and warmth! (See what I did there?)

Spending so much time in the NICU has allowed us to observe many needs that others may not think of when donating to a hospital. Donating a blanket not only reaches one family, one baby..... donating a blanket means adding to the NICU's linen closet supply. This supply blankets over 75 beds per night with clean linens; and why not add a touch of warmth and flare to these beds! A new blanket can give the feeling of home and comfort to a new NICU family, that blanket can be laundered, circulated, and make baby beds for as long as that little blankie can hold up. One blanket....will add a touch of love to multiple babies...and THAT, my friends, is awesome! 

Feel free to click back through our original Grace Blanket Drive blog post for further back story on our decision to pay it forward to our favorite hospital. Please join us, recruit your office, tell your friends, and let's cover these babies in love and prayer from around the nation!

THE NITTY GRITTY:

CONTACT: me, at tarajarvis13@gmail.com for my address to mail blankets to.
TIME FRAME:  Please have all blankets in the mail by AUG. 1st, 2015.

WHAT IS NEEDED?

• NEW baby blankets of all types, colors or prints! Have some fun, and use your creative gifts! Nurses love a fun spiffy new blankie!

• Sew your own! - About a square yard of fabric will do. (flannel & cotton hold up well to industrial washing.)

• Buy a Blankie!
• any medium sized baby blanket or throw 
• cotton or flannel receiving blankets 
• crib sheets & fitted sheets are great too

INSIDER TIPS:

• Hospital Rules - new/new with tag blankets only please. This ensures the safety of patients. 

• DIY Fleece Tie Blankets - are known to NOT hold up well to all the hospital washing. We will absolutely still accept these as donations, but use these as gifts for NICU families/babies to take home. They will not be able to stay in hospital linen rotation due to short laundry life span...those poor fellows. 

If I am missing anything, please shoot me a message! I try my best to reply asap.
Again, thank you all for helping us shower love on this precious hospital. I cannot wait to start getting blanket mail, it will do my momma heart good.

One more question: Grace Blanket Drive donated 930 blankets to the hospital last year...

DO YOU THINK WE CAN BEAT THIS??????

Pipes - snug as a bug in her custom threads!

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.