Piper's Plan

Piper Grace the fashionista!

Whew! 

What a busy busy holiday season! I feel like we've been crazy busy since Thanksgiving! Grace Blankets came in IN DROVES (more about that in my next blog), Piper's story officially aired on TV, and her and I graced the cover of our local newspaper! We are officially DIVAS! (Matt says this is not a new development...but what does he know!?)

With all the hoopla of preparing for the docu-series and getting blankets organized for delivery, Matt and I have been patiently waiting to update you guys about our next steps with Piper's hospital stay. Please bear with me below, as I will try to explain, to the best of my ability, what we are planning on to get this little star home! 

Piper was doing OK on her oxygen, and weaning down on drugs, when she kind of reached a plateau in her nose cannula settings. We, along with her NICU team, asked "Is this still her body healing from lung injury caused by CDH?" or "Is this due to her having a couple (patchable) heart holes that are ready to be fixed?" We needed to get over this hump, and we needed to confirm how we were to proceed with her care. Heart or Lungs? Fix holes or go home first? Tracheostomy?

Pipe's team decided to proceed with a heart catheter procedure to study how her body was doing with the holes in her heart (VSD & ASD: ventricular septal defect & atrial septal defect), and how her lungs were processing oxygen as they healed. (This is why she was intubated in pictures...all standard procedure for the heart cath.) The results of this study would tell us which symptoms trumped priority during this hospital stay, and guide our home course. 

The cardiology team concluded that the plateau Piper has reached in the oxygen weaning process is still due to her lung injury from her diaphragmatic hernia; and the holes in her heart can be placed on the "back burner" for repair at a later time. Lungs....that is what we will concentrate on. These results shifted our care to the NICU's CLT: Chronic Lung Team.

The Chronic Lung Team of doctors and practitioners have a few tricks up their sleeve to beef up baby's lung function and get babies HOME, stable, and on the support they need. They assessed Piper, and came up with a few options to try in order to get her lungs in shape for the journey home:

• 10 day steroid course to improve lung function
• inhalant meds added to heal lungs
• move her feeding tube (to trans-pyloric) to decrease risk of pukeyness/aspiration 
• Tracheostomy - to go home on a vent for however long it takes for lungs to heal

We have accomplished the first 3 of the list above...and this momma was going to fight that last little bullet. Why trach my baby when I have seen her breathe successful with just a nasal cannula? Nope, I'm fighting that. Nope.

Being a stubborn Texas Woman, it took me a few days, but I slowly started to process what a trach procedure would mean for Miss Piper. Earlier in the week, with her nose cannula, Piper's stats and vent support settings had been all over the place. She was turned UP on her oxygen, to our frustration, and I realized that docs were having a hard time estimating how much of her O2 & Nitric Oxide (NO) was escaping from her cleft lip/palate and not even entering the lungs! That darn cleft lip & palate was preventing her lungs from getting the gasses they needed from the machines in order to heal! Prior to her heart cath procedure, Piper was intubated, and within 20 minutes, her vent support was being TURNED DOWN! Why? - Because her face, i.e. her clefts, were taken out of the equation; and her lungs were getting what they needed without the hindrance of air escaping from lip/palate. Hmmmm.

Driving home from the hospital that night...EPIPHANY! We need to take her face out of the equation. Duh! Stop being so stubborn, Tara! (yea, I talk to myself while driving, but who doesn't?)

Placing a tracheostomy ("trach") in Piper's airway, would allow her lungs the gasses they need to heal, AND keep her vent support settings lower than when she is on a nose cannula! Weaning those settings down means going home.... so let's do it. What exactly is a trach, you ask? 

A tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and breathing is done through the tracheostomy tube rather than through the nose and mouth. (Mayo Clinic)

This sounds invasive, and it is, but it will get Piper back to a place where the word "home" is on the horizon. Placing a trach tube will narrow our focus, get us prepared for home, and will give the lungs the opportunity to heal without risk of further injury. Time is what is needed to heal Piper's lungs...and a trach will allow us to spend that time at home, rather than the hospital.  Time she can be sitting up, playing, learning, developing and doing normal baby things without a tube in her mouth! WOW!

SO, here's what the plan is shaping into:

• Tracheostomy procedure this coming week
• Heal up from procedure
• Wean new vent settings to acceptable "going home" state
• Wean those icky hospital druggy drugs
• Train mom & dad on home trach use 
• Home

How long will the above plan take to result in a home coming? Who the heck knows, but we are well on our way and we are happy to be moving forward. When impatience starts to creep in during this process, I remember when we were just "surviving" on an hourly basis...look how far we've come. For that, I will be grateful for this long journey.

OK, my fingers are officially tired of typing medical jargon! Onto the fun stuff!

Piper Grace has been a total goofball lately. She tracks movements of her favorite silly nurses, loves to have her hands in her mouth, and thinks her momma is super funny! She has been such a doll, and tolerating this temporary intubation so well. 

Please pray for a smooth trach procedure this week, Piper's pain to be managed well, Mom & Dad to get some sleep, and for all to BE STILL and GRATEFUL for where we are. Piper is here. Piper rocks our socks off!

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!

Lucky Chucks for MONDAY!

Hello all!

Piper has had a solid successful week of narcotic weaning. She has been kept comfy, increased her feeds to 82mL per feed, and drumroll please...............has been moved to the step down unit!

The step down unit is for low support babies that are doing well enough to get their own room, instead of the constant hussle & bussle of the main NICU! What a great step in the right direction! We have our own room, bathroom, pumping space, and clothes closet! You go girl! She has daily visits with Occupational Therapy to work on bottle feed practice, daily play time with Physical Therapy, and a couple visits a week with Music Therapy! (I already asked...and tubas aren't allowed in the hospital. HA!)

Here's what's going on now: Matt and I had a care conference with Piper's neonatology team on Friday, to discuss our plan of action for her immediate future. The consensus is that our next step is getting Piper a G-tube placed. A gastric tube is a tiny port placed in her belly where we can pump a feed into. At first, you may think this is because Piper has failed at eating by bottle, but upon contemplation, here's why this is a GOOD THING:

• Gets the nose feeding tube out of her throat, allowing for less gagging/better bottle practice
• Bottle feeds, though doing OK, will take weeks for her to learn to complete a days worth of meals. 
• Placing a G-tube will take the above weeks away, and allows her a quicker home coming!
• Bottle feeds could then be practiced at home with no added pressure!
• Post cleft lip surgery in a couple months, G-tube will take feeding pressure off of mom again, as Piper's new lip recovers!

Did you catch that bullet up there that said "home coming?" YEP, you read correctly! After we place Piper's G-tube, she is extremely close to coming home! The surgeons need 5 days of recovery from the G-tube procedure, and then it is up to her neonatal team to wean her oxygen/flow to an acceptable rate for home use! That's it. That's all we're waiting on. Holy Moly!

Piper's neonatal team has not been aggressively weaning her nose oxygen/flow these past couple of weeks, knowing that she will have to be intubated again to undergo this G-tube procedure. She will be watched very very closely after surgery to decide on a safe time to extubate her fragile lungs. She could be extubated a few hours after surgery, OR she may take a few days to slowly wean the vent, then extubate. We do not want to push or stress those little lungs! (So please don't worry, if you happen to see a picture with a new tube in her throat. Just a post-surgery necessity.) Please pray that the time she spends intubated is short, so we can get the ball rolling again with weaning her to her nose cannula!

Once recovered and back on her nose cannula, docs will begin to wean down those oxygen settings, until they feel she's ready to come home. Ready for this? Piper being home by Halloween is a huge, realistic possibility! Whoa, baby! We know we are on her schedule, and little things could cause tiny backslides, but we are so close to her being home ready. 

Frankly, this is a post I never knew I'd write. With Piper's original life prognosis, and her subsequent NICU stay, we have been very careful with our emotions. We've had hope, but the discussion of home was only very carefully had in private. Now, we are having real life meetings about it, AND IT WILL HAPPEN! What an amazing miracle!

So people, strap up those LUCKY CHUCKS for tomorrow's G-tube surgery, Monday, Sept. 29th at 1pm!

We will keep you posted on her progress once Matt and I get home and settled from a day at the hospital. I've listed some specific prayer requests below:

• G-tube surgeons to have easy breezy procedure
• Piper recovers well and has limited time being intubated
• Docs find a great balance of milk nutrition/feeding rate once G-tube is in
• OT goes great after G-tube is in
• Narcotics weaning completes without incident
• Post surgery - oxygen weaning goes smoothly for a home coming!

Thank you all for your continued happy thoughts and prayers. We are so appreciative of the help we have received and the love we are shown. I have a little something in the works for us to give back and pay it forward, and I will blog about it soon. I'm excited! Enjoy little missy's 7 week pictures below (6 days late!) 

Take a Deep Breath...

First thing's first.....
Notice anything about this picture?

8.29.2014 - VENT OUT!

Piper Grace Jarvis has decided she NO LONGER NEEDS A BREATHING TUBE!!!!!!!!!!!!!!

Needless to say, Matt and I have had a super duper fabulously awesome week. I told you I'd update on Piper's stats; so I've listed our hurdles hopped below. This girl is an expert hurdler already!

• Beginning of the week, Piper weaned off her oscillating vent and went to a traditional vent. This told us her lungs were ready for the next step!
• On traditional vent breathing tube, Matt and I were able to hold Piper for the first time! Be it at birth, or at 3 weeks, 2 days - the feeling is glorious!
• The same day we held her, they introduced her tummy to mommy's milk. (5 mL at a time.) A very proud moment for mommy!
• Yesterday - Piper had the hiccups! How's that for a functioning diaphragm!!!!
• Last night - they turned her breathing tube settings to "AUTO" - allowing Piper to control the breathing help she received from the machine. Her oxygen and CO2 numbers remained  perfectly stable during this time, leading doctor's to believe she was ready for....extubation!
• Last night - she made a tiny tiny poo! Silly fact, but this means her tummy is processing milk and they can continue feeding her more and more now that her anatomy proves functional.
• TODAY at 2pm - Docs removed Piper's breathing tube completely!!!! HOLY MOLY!!!!!!!!!

Fighting Piper Grace Jarvis now has ZERO tubes in her mouth helping her breathe! She has switched over to a positive pressure nasal cannula, and that's it. She has had fabulous blood gas results all day and is thriving with no breathing tube. She's also allowed her nurses to double her mommy milk feedings to 10mL! This child never ceases to amaze us; and if you can't tell with all my exclamation points....we are excited!

She is moved into a real baby bed, with a fun mobile to gaze at, weaned off some pain meds, and is now allowed to wear baby clothes! (Be still my heart!) I held my baby today, looked at Matt, and asked "have we done this?" We are getting closer and closer every milestone to being able to say that Piper has kicked this in the butt. We are in awe. Docs are in awe. Everyone that has come into contact with Piper Grace is in awe. A month ago, I had admitted to opening my arms, submitting the future of my unborn child to the mercy of our Lord. I agreed to do the best I could with the time He chose to give us. Today, I again open my arms to Him, this time to reach up and praise. My fingers can't reach high enough to show my gratitude. 

We now have no clue on time frame of the "coming home" chat. Piper will have to switch to breast feeding, bottle feeding and be successful maintaining her weight, maybe have her cleft lip fixed and her heart checked out again before coming home. BUT - the "coming home" discussion is on the table ya'll...and THAT is a miracle. I cannot comprehend how far we've come. I am in awe sitting here typing. Awe. 

Holding our Piper today, talking with Matt, we discussed Piper's story not being our own. She is doing so well, not as a reward of being faithful, but we feel she is being used to tell ALL OF US that the power of prayer is alive and well. That good things do happen. That coming together to support each other in Christ has amazing consequences. We cannot thank you enough for the support. 

As we patiently await Piper's next step, be it more milk at feeding times, more poo in a diaper, or less oxygen in her nose, please pray with us that she stays on this positive road to recovery. Pray that we learn answers about her cleft repair soon, and we continue to glorify God in our story. Thank you all. 

UPDATE: Surgery Recap & Post Op Piper

Hey ya'll!
Last time we chatted, Piper was about to head into surgery for her hernia repair. With such a long and eventful day, then subsequent restful weekend, I haven't gotten to post about specifics. Check out our recap of surgery day, as well as the time since.

Thursday, August 21st - SURGERY DAY
The first thing I noticed upon waking up, was that I was calm...no nerves. If you know me well, you know this is rare, but I felt a peace that Piper was in good hands (both of God, as well as surgeons'.)

My mother in law, Kay, stayed home with Tallan, while Matt, Mr. Mark (my father in law) and I headed up to hang with Piper before surgery. After praying over that sweet babe as a family, we began a day of waiting. If you've ever had surgery, you understand that most of your day is spent waiting on logistics, and this day was no different. 12:30pm surgery time turned into 4pm surgery time as the day ticked by. The best part? We were in NO hurry. Piper had taken her time telling us she was ready for this, we did not impatiently schedule this surgery, she did with her stable stats. No rush...in due time...this would happen.

Our quiet waiting changed as soon as a team in surgical blue came into the NICU. 2 scrub nurses, 2 respiratory therapists, and 2 anesthesiologists made their way to our babe, and began the journey to the operating room. This involved administering some anesthesia immediately, the unhooking of all her machines, as well as someone taking over to manually breathe for our girl. I had been prepared all day for surgery, I had been prepared for them to move her and her equipment, I had been prepared to walk behind our baby to the operating room. I HAD NOT been prepared to see a man, with a breathing bag attached to Piper's vent tube, taking my baby's life in his hands. Duh, I knew they'd have to turn her machines off...but BRUTAL doesn't even begin to describe the sight of that breathing bag. The sound of that breathing bag. Brutal.

Matt and I then followed the surgical team, a quiet somber baby parade, to the surgical floor, where we would see her off. The nerves about surgery? - still not there, but a primal mommy feeling was. I have not been in control of my child since delivering her, I'm used to having others care for her, but this was different. These people were taking a part of me away, down a hall, into an unknown that I was unsure she'd return. The primal mommy in me experienced a guttural pain that is indescribable unless you've been there. We kissed our Pipey, and wished her luck, and prayed. That's all we could do. Brutal.

The waiting during surgery was quick for me, thanks to YOU! I had not had my phone all day until this moment, and was quickly distracted by tons of sweet sweet pictures of friends, family, strangers in their "Lucky Chucks!" We were completely overwhelmed with the outpouring of love and support from you all on that day. I know now, my peace on surgery day was because of your prayers. Thank you, so very much. There are no other words. Thank you!

A speedy 90 minutes flew by, and we were met by our camera crew (totally will blog about them soon) ALL SMILES as they came in from the surgery. That's right, our camera crew got to witness her surgery! Their smiles were telling, and my heart began to lift. They were quickly followed by our favorite guy, Dr. Iqbal, Piper's surgeon. This man, who had postponed her surgery once before, who has been cool and calm, who has been extremely objective......was no short of HYPED UP walking into the room to chat. He explained that Piper's diaphragmatic hernia was a typical repair, in which he moved her tummy/bowel into the correct place, then repaired her diaphragm using her internal oblique muscle. 

Piper's stats stayed extremely happy happy stable during surgery, no additional assistance was needed for her during the procedure, and he was extremely happy of the success he had. Praise Jesus ya'll! STEP ONE - HERNIA REPAIR........CHECK! DONE! 

Now? We go back to allowing Piper to rest, relax, grow her little lungies, and chilllllllllll. The biggest success we have had since surgery day is that doc's have been continuing to wean down her vent support settings since the night of surgery. (Most times, like we talked in previous posts, babies need more support, and sometimes crash after surgery.) Not Piper Grace. She got her belly fixed and has kept trucking along. She's a rock star. 

What's next? A lot of things are next. They are tiny baby things that tell us we're making progress. There is no time frame on these things, because we, along with her team, are allowing Piper to call the shots. Here are some small steps you can begin to pray for as we navigate Piper's road to recovery:

• Her oscillator vent will wean down enough to be able to switch to traditional vent 
• Her tummy/bowel will begin processing fluid now that they're activated/in the right spot
• The team will decide when to add precious golden mommy milk to her diet.
• Her lungs keep growing for her success off vent
• No regression - No ECMO!

Of course, LONG LONG TERM goals will be no vent, holding that babe, cleft lip repair, dare I say the word...home? These are on our minds, quietly, but not our our current radar. Hope that make sense to ya!

In the meantime, no news is good news from us. It means her daily stats are stable, her progress is improving, and we are just proud of no crazy changes. Again, we are in no hurry. Piper is calling the shots. She came out of my tummy determined to fight, to place her hand on our hearts, on your hearts, and teach us patience and grace. I love watching God work through her. I love you all for how God is working through your prayers. This road is long, and there will be ups and downs, and I don't know how this story ends. Regardless, this story involves YOU, and we are so thankful. 

3 weeks old - wide awake 8.25.14 - with baby blues!

TAKE 2 - Surgical Update

Ok folks,
After an uneventful weekend of rest and relaxation for Miss Piper, she has successfully done her part in regulating her numbers a bit more on her own. Last week we spoke about our surgeon wanting Piper on as least amounts of assistance possible before surgery. I'll try to explain his reasoning for ya below.

The numbers we're watching? Here's some medical speak for ya:

1. The percentage of pure oxygen pumping through the vent - after birth, Piper needed 100% O2 to    regulate her little body...now she is only needing 30% to maintain stabilization. Point one for little Miss as she prepares for surgery.
   
2. The amount of Dopamine given through IV - after birth, Piper needed max assistance regulating her blood pressure with this drug. Now, she has had her Dopamine pump TURNED OFF for 3 days, needing no Dopamine assistance! Point two for Piper!
   
3. The amplitude of her Oscillating Ventilator - Piper's ventilator vibrates her lungs with little quick puffs of air to keep them inflated in a safer setting than a traditional ventilator. The lower the amplitude of this machine, the better. She has allowed weaning down of this amplitude as well before surgery!
   
4. Her ability to expel CO2 - Piper must be able to expel the CO2 gas her body creates, and this is what she has had the most delay in helping her nursing staff out. Last week, her ability to accomplish this was trending in the right direction - leading the surgeon to postpone surgery for a few days to allow her even more success in the area. She has since improved her CO2 exchange, which is why we are ready to proceed with her surgery!

After talking with surgeon, Dr. Iqbal, this afternoon, he believes Piper has done her best to prepare her body for a stable surgery. Having all of her numbers in check will be a HUGE plus during recovery. Knowing that any surgical procedure knocks babies for a loop, we have to prepare for Piper to backtrack a bit and need more help with all the numbers listed above after her procedure. This is why they want her weaned down with everything....so we can wean UP when necessary! Make sense? Hope so! Let's all pray that with the assistance of her awesome team, and her new little tum tum, that she will has as little drama as possible after her surgery. 

SO - THE DATE IS SET! THURSDAY, AUG. 21st at 12:30pm - Piper's hernia repair surgery! Please keep her in your prayers. Pray for Dr. Iqbal, for Piper's hernia to be small and easy to repair, for Piper's numbers to remain as stable as possible during and after surgery, and for Piper to have an easy time re-regulating her numbers after surgery. Please also pray that her numbers keep her away from needing the assistance of the heart/lung bypass machine (ECMO) in the days after surgery. 

Last week, we had fun wearing our "Lucky Chucks" for surgery day, and we would love for YOU to join us! Feel free to sport your favorite Chuck Taylor sneakers this Thursday and #PowerupforPiper!

As always, we are so humbled and appreciative of all your prayers and support! We feel the love...and YOU are loved!