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!

Help Us Pay it Forward - Grace Blanket Drive

Hey ya'll!

Just a couple quick updates before I get into the meat of why I'm blogging tonight. Since our "blip" setback a couple weeks ago, Piper has been extubated, and is back on CPAP cannula. She is alert, chatty and back to her strong willed self. We are so grateful for all the staff that helped intervene, and get her back on the mend. We are back to our old routine of wean oxygen, wean drugs, add feeds....repeat. Please continue praying for her baby steps to success!

Also, we are excited to attend the premier of Children's Mercy's docu-series, "Inside Pediatrics," Tuesday night! This is a huge deal for us and I can't wait to blog pics and more info asap!

Alright. Down to business!
For a while now, it has been on my heart to give back, and acknowledge our love for the NICU staff at Children's Mercy. I've thought a lot about how we could give back...and I've come up with a plan that can involve YOU!

Matt and I have been beyond blessed to have such amazing gifts sent to us; as well as having our own money to spend on all of Piper's adorable blankets and linens. Most of the time, in the NICU, this is not the case. Our night time nurses pride themselves on the task completed at the beginning of their shift - bathing cute babies and giving them a fresh clean bed to sleep in. Our nurses are in LOVE with all of Piper's wonderful blankies, and it hit me...that's how we will give back!

There are over 75 bed spaces in the NICU, and each baby gets a nightly crib linen change. I've been up at the hospital when nurses are scrambling to find nice blankets for these babes when the patient count is at an all time high. More often than not, stark white hospital linens are used; which are great, but imagine the warmth a new special blanket would give the staff, the parents, the babies in need! A blanket with color, a blanket with pizzazz, a blanket sent with love.

We are so excited to be doing Grace Blanket Drive for the sweet babies of Children's Mercy Hospital!!! Named after our sweet Piper Grace, and made possible by her very own prayer warriors! I am asking for your help! If you'd love to pay it forward with us, consider donating blankets to our cause! I've listed extended info and ideas for ya below.

CONTACT: me, Tara, at tarajarvis13@gmail.com for the address to mail blankets to.
TIME FRAME:  Please have all blankets sent by 12.20.2014

WHAT IS NEEDED?
NEW baby blankets of all types, colors or prints! Have some fun, tell your friends, and use your creative gifts! Nurses love a fun spiffy new blankie!

• Sew your own! - About a square yard of fabric will do. (flannel & fleece hold up well to washing.)
• No Sew Fleece Tie blankets -can be made by youth groups, as a life group activity, girl's night in, etc!
• Google "Fleece Tie Blanket Instructions" for a bajillion simple how-to's
• Buy a Blankie!
• any medium sized baby blanket or throw 
• cotton or flannel receiving blankets 

Seems simple enough, right? I am so excited to get started, and I hope you are too. These nurses, and this NICU have blessed us with their unwavering love and care for Piper Grace, and we cannot wait to give back. We are counting on your help! Please do not hesitate to email me with questions! Here's to warming hearts, by blanketing babies with love.

Our Little Blip

I am in a horrible, terrible, no good, very bad mood. There, I said it, I got that out there. I feel better already.

Miss Piper Grace has had a little bit of a setback. Last week, her feeds were going well, she was down on her oxygen, and we were very close to coming home. We had trained on home equipment, started nursery decor scrambling, and had gotten quietly excited. Quietly, because we know our plans matter not to Piper Grace and her healing. Silly silly girl.

Over the weekend, a couple changes were made to prepare Piper for home:

1. Increased her feeds from 85ml to 105ml every three hours. This allows mom & dad to sleep/skip a feed overnight and get everyone rest. (MOST babies tolerate this change fine. MOST babies.)
2. Discountinued the use of PRN (as needed) morphine for her once daily meltdown. This was such a small dose, we'd trial off and see how she tolerated it. 

This is when Piper chimes in and says, "Hold up momma, I'm not MOST babies!"
The increase in milk made her tummy FULL, and the lack of morphine triggered a bit of drug withdrawal. The end results of both? - Three days of a very pukey Piper. Unlike a normal, healthy baby who pukes, Piper cannot keep her stats stable when her ONE good lung becomes compromised. A couple of days of icky pukiness resulted in her aspirating a bit of her spit up into her good right lung. Once this lung becomes compromised, Piper has NO help from the other lung, and very limited reserves to help herself stabilize and oxygenate.

Chest X-ray has confirmed a lung compromised by aspiration pneumonia. This one good lung cannot do 2 things at once for Piper. It must fight this infection; but it cannot keep her body oxygenated enough as it does so. One thing has to give. To allow Piper's body, with the help of antibiotics, fight this aspiration pneumonia, we have to get her little body help in the OXYGEN department.

When an immunocompromised babe is needing breathing/oxygenating/gas exchange help, there is a hierarchy of support a NICU can provide. You'll remember me talking about most of these in earlier posts. (I've listed from MOST invasive/serious support - - - to least invasive support.)

• ECMO - heart lung bypass to oxygenate baby while their lungs rest
• Oscillating Ventilator - intubated baby with extra vibration for lungs to remain open
• Traditional Ventilator - breathing tube in throat regulating breathing/oxygen
• High Pressure/CPAP nose cannula - no tubes in throat, getting oxygen in nose
• Traditional nose cannula - provides minumal oxygen air flow to baby to keep stats up

Last week, when discussing home coming procedures, Piper was on her traditional nose cannula at an appropriate concentration to come home on! We were so proud! After aspirating her spit up, getting right lung pneumonia, and gradually needing more help to oxygenate...Piper has gone up to the Oscillating Vent as of this evening. Stop, look back up at my list above, and sigh along with me. DARN IT!!!! We were so close! I AM FRUSTRATED! 

Piper is needing some serious support right now to keep her oxygen sats up when her body fights this infection. She had to be paralyzed, re-intubated, put multiple IV lines in, and feedings stopped. Poor thing just needs help while that lung heals. That...will just take time. This is a reminder that we are not on anyone's schedule but Pipe's. She will gradually clear that lung, prove it with x-rays, and then we will gradually remove support as slowly as she sees fit. A step back that reminds us to not take advantage of anything. She will clear this hurdle...and you better believe that her momma is holding her starting blocks! No rush Pipes, thanks for reminding us. 

This set back, or blip as I like to call it, has thrown my attitude for a loop. I feel I have remained logical and composed through these 12 weeks of NICU. The fun mom that chit chats and knows when to talk medical and when to give comic relief to nurses working their butts off. Sunday night, I lost my sparkle. I logically knew we needed to get Piper the help she needed, but I was emotionally done. Done with not being able to fix it. Done with being strong, done with being scared, done with being tired. Done. I had walked into the NICU then moment they were intubating my baby, and I found a quiet place to cry. To be done. 

Trying my hardest to regain my composure before walking to Piper's cube, I experienced the exact reason I am in love with this hospital. Sitting alone in a NICU family room, multiple nurses walk in to be my shoulder. A nurse who has watched Piper during night shift lately, a nurse who watched Piper when she had her gtube, a nurse who was in the room when Piper was born and not supposed to live. The nurse who looked over our baby when her survival was assessed hourly. Surrounded by strong women, I am overwhelmed with love and I just CRIED. These women know our story, know our Piper, know our struggle, and are pulling for a happy ending just as much as we are. To look in the face of a woman who tells me to "come here, momma, and cry" is to feel completely wrapped in God's love and care. These women let me cry, let me be frustrated, and then picked me up. I cannot put into words how grateful I am for the women of Children's Mercy. The love I feel from them in my time of need is all encompassing and I know they are being used to remind me that it will be ok. 

It will be ok. Piper might need some serious support (we're thinking a of couple weeks,) and then we will be back to our bright eyed girl working to get home. We are taking things day to day, trying our best to be patient as this ickyness dissipates, and her numbers improve again. Bright side? Been there - done that - and we know Piper can kick extubation's butt when the time comes! 

Until then, please pray for everyone's well being. I'll make an easy list of specific prayer:

• Piper's numbers stay same and DO NOT WORSEN
• That her lung clears up quickly
• That we stay away from needing ECMO (big deal prayer!)
• That she extubates and is comfortable soon
• For mom and dad's weariness and fear
• For the fabulous women of the hospital to know they're appreciated & loved
• For patience to flow from us to the staff. No hurrying Piper Grace
• For no icky flu bugs sneaking into that NICU

At times like this, I am reminded that it is easy to be grateful and faithful when things are on the up n up. When times seem dire and frustrating, I must stop and remember who got us here. Piper is alive when she wasn't supposed to be, and no set back will let me forget that. She is HERE and she will FIGHT and we strive to give God the glory for even the tiniest victory. She is here. She is fighting. Go Piper go!

Have you  not heard? The Lord is the everlasting God, the creator of the ends of the Earth. He will not grow tired and weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the week. Even youths grow tired and weary; and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint. (Isaiah 40:28-31)

Power it Up PIPES!