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