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.

Our Life Lately...In List Form

I cannot express the outpouring of love our family has received since Piper passed in June.
We have been keeping our heads down, wrapped up in Grace Blanket busyness, and have tried so very hard to soak up every bit of the support you all have sent. Thank you, for your words, your prayers, and most of all - for keeping your memory of Piper Grace in your hearts always!

I have too many updates to tell you about, and don't want to wait to blog them one at a time, so today, I will throw at you LISTS! Kind of like the David Letterman of blog posts, if you will. Please take the time to scroll through, and check out how YOUR love and giving has impacted our family and this community as of late.

Grace Blanket Drive Grand Totals

* 2, 512 blankets were donated to Children's Mercy Hospital this August!
* From 172 donors
* From 80 cities
* From 17 states

TOP DONORS: (based on boxes received)
  1. Kansas City Metro - 61 boxes
  2. DFW Metro - 36 boxes
  3. Tx Panhandle - 23 boxes

I have gotten message after message from our NICU nurses about the blanket craziness that is going on at the hospital right now! Every baby with a brand new blanketed bed...every night. It's like Christmas for them, and we cannot thank YOU enough for your giving! As a result of all the new blankies, the hospital was able to donate their old worn out linens to our Great Plains SPCA!

PLEASE keep Grace Blanket Drive on your mind for this event EVERY year in Piper's memory. We will make this drive bigger, better, and share more love each and every year!

T Shirt Orders & Donation Opportunities

We have officially begun "Pipes" t shirt sales for the Grace Blanket Drive fund! Sport your Piper pride and help us fund further philanthropy with your purchase.

* $12 per shirt (sizes Youth Small through Adult 2X)
* Call Tara @ 817.319.8116 to run a credit card over the phone / or to plan local meet up!
* Email Tara (tarajarvis13@gmail.com) for address to mail checks for shirt payment
* Payment Due: 9/19/2015 - no late wiggle room at all!
* Shirts are expected to be completed / shipped by first week of October.

Grace Blanket Drive is excited to be providing a NICU parent meal and creating a nursing school scholarship this year with the help of your giving. We have a TON of ideas coming down the pipe (pun intended) for future philanthropy. Stay tuned!

With our new Grace Blanket Drive Fund: we are able to accept monetary donations year round, and even set up monthly commitment donations! Email Tara for more info! The Lord is working through Piper Grace's tiny life, and we are in awe!

Shirt Graphic!

A Piece of My Momma Heart

As many who have grieved the loss of a loved one know, many days you have your guard up. A "wake up - buck up buttercup" mentality that gets you through the day. I admit that most days, to function with this crazy 3 year old I have, I have my guard up. The blanket drive, tshirt sales, and Tallan have kept me busy and moving...but like I learned with Piper, some days just call for being still. Some days call for the lump in your throat to be released. Some days call for counting the minutes till bedtime, so you can cry with your spouse. Some days call for allowing memories to flood, while you be still.

As a fairly sentimental person, I can feel when "Piper" days are upon me, and am good about acknowledging the emotion I feel. Fighting this emotion does not honor Piper's memory...so I've chosen to open my arms to it. It allows me to be a better mom, and be grateful for every single Tallan quirk. It allows me to be a better spouse, as these days remind me to check in with Matty to see how he's coping. It allows me to be a better person, because I understand the silent strife and struggle the stranger next to me might be dealing with.

My "Piper Days" are often purposely triggered by a quiet drive, and a playlist that will forever be linked to this past year of our lives. My soul is so touched by music, and I've found that Piper's Playlist helps me reset, remember, and love this journey with my whole heart. I'd love to share this playlist with you. It was played at her memorial service, and each song touches my heart for a different reason. Songs you may have heard before, but may take on a different meaning now.

   * A Thousand Years (Christina Perry) - I think of a mother's love being infinite.
 
   * I Won't Let Go (Rascal Flatts) - unwavering support. I think of this as my song to Matt, or God's song for our family.

   * Never Grow Up (Taylor Swift) - Piper's sweet innocence.

   * You Decorated My Life (Kenny Rogers) - An oldie! This one has special meaning, as it was the song my Dad sang me to sleep with when I was little. How a love for someone can change everything.

   * I Will Carry You (Selah) - 100% the theme song for our journey. My favorite. Brutal!

   * See You Again (Wiz Khalifa)  - what I will say to Pipes when me meet again!

   * To Make You Feel My Love (Garth Brooks)  - the undying love Matt and I had for Piper, and how we wanted her to know so badly, how much she was loved.

   * I Can Only Imagine (MercyMe) - duh!

   * Though You Slay Me (Shane & Shane) - praising God through the hard times.

   * Somewhere Over the Rainbow (Katharine McPhee)  - uh...duh!

   * Word of God Speak (MercyMe) - my daily reminder.

  I'd LOVE to hear how one of these songs speaks to you. They will forever be my Piper songs.

A Thank You

Since last Christmas, I have planned on blogging a HUGE thank you to the staff at Children's Mercy. This was when I thought I'd blog Piper's home coming. This thank you now carries a different meaning for me. Not a thank you for getting us healthy, for sending us home....but a thank you for loving our daughter when home was no longer an option.

NICU doctors and staff face miracles, struggles, and heartache every single day. They all could choose to protect their hearts, and distance themselves from patient journeys. Our family at CMH did no such thing. They fought for Piper and celebrated as she succeeded. They fought for Piper when she backslid and struggled. They loved her when she wasn't supposed to live a day. They found fun in the good days of Piper's 10 months of life, and made our NICU journey bearable.
They continued to love her when we realized her fight was ending. They chose to love her even when heartache was eminent, and for that, we will always love them. I miss them every day, and cherish their friendships. I'm grateful for what they taught me, and I'm so proud of their choice to love each baby, every day, regardless of circumstance.

I'd love for you to jot down a couple names, and add them to your prayers, or happy thoughts list. These people have all laid their healing hands on Piper Grace. Hands that I believe are blessed by God to do his work here on Earth.  (If I miss anyone, it is unintentional! Just going from my scatter brain's shotty memory and scribbled notes!)

Fetal Health Gals: Cristy, Kristen, Andrea, Amy, Karen, Valerie

Primary Nurses: Ashley O., Allison, Marcela, Katy, Ally, Jenn, Claire, Michelle, Sarah

Day & Night Nurses: Julie, Kara, Hilary, Coleen, Stacie, Tina, Lindsay, Christina, Michelle J., Ashley S., Jen S., Kayla, Becca, Dot, Robyn, Annie, Brittney, Jenny, Lauren, Stephanie, Jayna, Greta, Katelyn, Shayna, Sam, Jessica, Tess, Christie, Elaine, Susan, Amanda Ab., Kristyn, Rachel, Sarah W., Melissa, Sara C., Amanda Ar., Linda, Jen K., Stacia, Annie O., Amy S., Julie T., Carla., Alicia., Mary, Carrie, Brenda, Jenny H., Patti, Amy Sl., Maureen, Sheena

Respiratory Therapists: Callie, Maggie, Matthew, Brian, Caree, Theresa

PT / OT / Music Therapy: Stephanie, Mich, Liesel

Nurse Practitioners: DELO, Lisa, Jill, Sara J., Kerry, Daphne

Doctors/ Surgeons / Fellows: Dr. Cooper, Dr. Olsen, Craig, Dr. Petrikin, Dr. Iqbal, Tim, Dr. Palatto, Dr. Kilbride, Dr. Nyp, Dr. Troug, Dr. Weiner, Dr. Sharma, Dr. Lachica, Dr. Oshode, Dr, Bernbaum

PaCT Team: Dr. Linebarger & Nurse Tonja

THANK YOU all for loving so hard, for caring so fiercely, and for being the biggest badasses ever to grace a NICU!

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.

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.  

  

Here's to Y-O-U!

WOW. You guys rock!
We set out to provide some bed change blankets for the 75 NICU bed spaces; and the results were above and beyond what we could have ever expected.

God is working through each and every one of you; and let me tell you about all the warmth you have provided this hospital!

• GRAND TOTAL of 930 blankets!
• From 119 different donors
• From 62 difference cities
• Mailed with love from 11 different states!

AMAZING!!!!!!!!
To preserve donor anonymity, but also explain the scope of your love, I'll proudly give shout outs to the fun fabulous places that sent fluff our way:

• Abilene, TX
• Amarillo, TX (2)
• Amistad, NM (2)
• Arlington, TX (2)
• Bedford, TX
• Blue Springs, MO
• Burleson, TX (2)
• Canadian, TX
• Chula Vista, CA
• Claude, TX
• Dalhart, TX (7)
• El Dorado, AR
• Fayetteville, NC
• Ft. Worth, TX (4)
• Garden City, KS
• Garrison, TX (2)
• Gladstone, MO (2)
• Grandbury, TX
• Grapevine, TX
• Harrodsburg, KY
• Hewitt, TX
• Highland Village, TX
• Irving, TX
• Katy, TX
• Kansas City, MO (15)
• Kingwood, TX
• Leawood, KS (2)
• Lee's Summit, MO (2)
• Lefores, TX
• Lenexa, KS
• Lillian, TX
• Lipan, TX
• Lubbock, TX (5)
• Mansfield, TX (14)
• McKinney, TX
• Mission, KS
• Nacogdoches, TX
• Newberry, FL
• North Richland Hills, TX
• Oceanside, CA
• Olathe, KS (2)
• Overland Park, KS (8)
• Paola, KS
• Parkville, MO
• Pearland, TX
• Prairie Village, KS (2)
• Richmond, TX
• Rockwall, TX
• San Antonio, TX
• San Augustine, TX
• Seabrook, TX
• Seagoville, TX
• Seguin, TX
• Seymour, TX
• Spring Hill, KS
• Spring, TX
• Stewartville, MN
• Weatherford, TX
• Wheeling, WV
• Wichita, KS
• Winters, TX

Again, I am in AWE of your love and kindness; and am incredibly humbled by your support. I've heard from doctors, nurses, administrators and chaplains who are so so grateful for the love sent with these blankets.

Fleece tie blankets were walked around the NICU and given to parents with small babies in isolettes.

The majority of blankets will be laundered and dispersed throughout the hospital for linen closet stocking of NICU, PICU, and patient floors.

Social Work has stocked their supply closet as well, to be able to provide a very special blanket to a child or family in a time of need.

Up at Piper's crib the other day, I ran into a chaplain, who thanked me for our blanket drive. She had had the privilege of baptizing a small baby in the NICU, and presenting her parents with one of our donated blankets, that was embroidered with the word "Blessed." BE. STILL. MY. HEART!
You just thought you were covering beds...but your donation just covered a new baby with the faith and love of baptism. Again, WOW.

Thank you seems like such a small phrase to use at a time like this...but it will have to do.

THANK YOU for taking the time, over the holidays, to buy/make & mail in blankets.
THANK YOU for thinking of others with your donations.
THANK YOU for the love sent along with prayers for these babies.
THANK YOU for proving that this world still has people who will lean in and support one another.
THANK YOU for being our prayer warriors...and allowing us to lean on you.
THANK YOU for loving, and crying, and being still with us! THANK YOU!!!!!!!

My wish is that you feel the warmth that your blankets have provided in your soul. You made a difference, and we will never forget it. So right now, as you read this, take a moment, stop what you are doing, open up your arms....and feel the love and warmth we send right back to you.
You. Are. Awesome. We love you all. Feel the warmth!