A Birthday

There was a birthday today. 
My baby's birthday was today. 
It was quiet and solemn around the Jarvis house today; not because festivities were limited due to COVID distancing or protests, but because my baby is not here.  He died - and I'm still pissed. 
I've discussed with Matt recently that I have not blogged a lot about Jett Matthew.  There wasn't the months and months of updates, of pictures, of warning...to write about and get off my chest. No - this time, there was a warning, his birth...and then he was gone. 
I haven't known what to share about Jett; because his loss  feels so much different than Piper's.  What I can share is real & raw (duh - have we met?)...and angry. I've realized I have been afraid to share my anger with you. I am so proud of the fun and love and giving that we choose to share with Grace Blankets and our family. I try so very hard to keep things positive; but for now, love me through my anger, please. 
I remember this 1 year birthday mark with Piper. The outside world has turned for 365 days, the distant friends may assume that time has softened the blow of infant loss; but NO, my momma heart is screaming in pain:  "STOP TURNING - STOP MOVING ON - THIS. JUST. HAPPENED. WE ARE NOT OK - ACKNOWLEDGE THIS HUMAN BEING....IT HAS NOT BEEN A YEAR OF HEALING! STOP WORLD....Stop and remember him. Please. Remember he was here and lived."
Time is a shitty shitty thing.  I speak from experience when I say, yes, eventually time makes pain less acute.  I feel we are in that space of time since Piper died.  That first year though - time stands still for the Jarvis family. Why the fuck do I have to know this from experience? I am so angry at the repetitiveness of this! Ya'll! 
My deepest worry when preparing for Jett's arrival, was that his short time on Earth would make him less significant for others, than Piper. (I know any mom that's experienced a miscarriage, a late term loss, stillbirth...understands where I am coming from.) I SEE YOU, mommas. Your babies are significant - regardless of their time here. 
Jett would have been 1 year old today; and I am still struggling with the lack of closure and redemption for our family. I am beyond grateful to be a part of a special needs, NICU mom, KC, CMH mom, loss mom community...and I watch other families walk their own journeys of hardship with their babies - BUT there always comes the redemption stories. The rainbow babies. The full term babies. The babies that enter these families lives and heal old wounds. I am so happy for these stories...but I am still so sad that they are not mine. We had no such redemption story. No baby that came without fear and pain. No baby to snuggle without counting the minutes until they were gone. I am still pissed. 
Yes - we know the countless outside the box options of continuing our family.  For now, try to not fix this - and just hold space for Jett right now; and pray for our family. We continue daily, with the goal of being open minded, pure in heart, and led by God for our next steps...BUT also with the notion of being perfectly content and ok with our family as is. 
We have loved the support and outpouring of love this year, and I have had countless conversations with others offering advice and help with family planning. I have realized we are all just trying our best to fix each other's pain, to make it sting less, to offer solutions that can help solve a problem.  I urge you to step outside your comfort zone the next time you are around someone in pain. Do not offer well intended advice to make yourself feel better in the silent moment. It's awkward  - but allow someone to be in pain. Hold reverence and respect, and sit with them in pain. No solution necessary.  It's hard...but YOU will be the support they remember. 
If you have read this far and haven't chalked me up to being a bitter asshole - THANK YOU.  Again, I am so proud of our little family, our little cause, and the positivity we try to spread out in the world....but I needed to be real for a sec. It's still hard to see happy families. To watch siblings play. To witness redemption stories....and not crave them with every cell in my being.  This is loss. This is grief. 
I am a mother of 3, I viscerally felt that there was someone missing today. Someone important. His name is Jett Mathew - and he would be 1 year old.  There was a birthday today.    

                          (all photos cred: Andy Pollard)

Grace Blanket Drive 2016!

IT'S TIME!

Our 3rd Annual Grace Blanket Drive is officially LIVE! Help us make this year the BEST EVER!

We are now accepting blanket donations to gift to Piper's NICU at Children's Mercy Hospital, here in KC...

AND THIS YEAR, we will also be expanding our donations to some areas close to YOUR hearts as well! Grace Blankets friends in Amarillo, Lubbock, Houston, Little Rock, and Florida will be helping us deliver to their area NICUs! How amazing is this? YOU guys are making this happen, and we are beyond excited to increase our scope of service!

Spending so much time in the NICU 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. In KC, this supply closet 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! 

Please join us in giving back to our NICUs, recruit your office, tell your friends, and let's cover these babies in love and prayer from around the nation! We will accept blankets for ALL areas...and then divvy our stock among our new hospital friends. 

THE NITTY GRITTY:

** CONTACT: tarajarvis13@gmail.com or text 817.319.8116 for the address to mail blankets to! **

DO NOT USE ANY SAVED ADDRESS YOU HAVE FOR US! (We're moving and I'll give you new shipping info!)

TIME FRAME:  Please have all blankets in the mail by AUG. 1st, 2016.

WHAT IS NEEDED?

• NEW baby blankets of all types, colors or prints! Have some fun, shop around and use your creative gifts! Nurses love a fun spiffy new blankie! 
• any medium sized baby blanket or throw 
• cotton or flannel receiving blankets 
• crib sheets & fitted sheets are great too, and always needed!
  
• DONATE MOOLAH! We can take care of the shopping for you, if you'd rather donate funds to our cause! We use our Grace Blankets fund each summer to buy additional blankets for hospitals. Contact me: we can take CC's and checks!

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.
  
• Yes, this is safe for all. With hospitals' Back to Sleep & Safe Sleep regulations, nurses use these blankets as bed linens underneath babes...not to cover them up! :) They can also be a great sibling support gift, and social worker scenario gift for families in need leaving the hospital. 

We are so excited to be continuing our work with our Grace Blanket Drive for the sweet babies of Children's Mercy Hospital, and now other NICUs nationwide!!! 

Named after our sweet Piper Grace, and made possible by her very own prayer warriors!

We are counting on your help! Can we beat last year's total?

2014 - 930 blankets donated

2015 - 2,512 blankets donated

2016 - TBD!!!!!!

Please do not hesitate to email me with questions! 

Here's to warming hearts, by blanketing babies with love!

             

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!

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!

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!

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!"