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!) 

Nose tubes, IV's & Pain Meds - Oh My!

Howdy!

First of all, HAPPY 6 WEEKS to Miss Piper Grace!
Time has been flying by as we watch this super girl thrive!

These past 2 weeks have been pretty chill with Miss Piper, but we've made quite a few steps forward in that time! For a couple weeks, docs have been weaning down the pressure settings in her CPAP nose cannula. The less force in pressure = the more Piper is doing on her own. This process also coincided with her neonatologists deciding to remove her pain med/sedation IV drips and switch to medicine by mouth (i.e.her nose feeding tube.)

With the above changes happening, staff took things slowly, as to not upset our little lady with lung changes as well as drug withdrawal. Slow moving is fine with us...we'd rather not have our little junkie out of sorts!

Removing the IV pain med/sedation drips means NO IV's! Not a single one! No ouchie in her arm, no ouchie in her leg, no ouchie on her noggin! NO IV's! Wow! This has allowed for better snuggles and movement while mom and dad hold Pipes. (For my nursing friends - Piper's meds for the last week have been morphine and ativan alternating every 3 hours by NG tube.)
*Side note: with this ativan making her sleeeeepy, I really haven't gotten a chance to try non-nutritive breast feeding. All in good time. *

Piper has increased her feedings to 72mL of breastmilk every 3 hours as well! Bigger feedings, along with some drug withdrawal as her med dosage changed, created a bit of a pukey situation for a couple of days...but Piper quickly adjusted and has been doing well not spitting up her meals & meds since. This was to be expected, and nurses have made sure she is keeping her weight up (or increasing!) One point for mommy - they have not had to fortify my breast milk with any formula for extra calories! (I must be a big boobin' deal!)

Over the weekend, Piper proved comfortable enough to not even need her CPAP nose cannula anymore. She has moved down to an even smaller nose cannula, with no positive pressure needed! This nose tube allows us even MORE movement freedom, as well as getting to see more of her face! (Less taping!) Her heart rate and oxygen saturations have held strong even down on this smallest cannula. YAY PIPES!

Plastics, aka the Cleft Team, consulted during rounds last week. They've tentatively made a plan to meet with us at 3mo to discuss cleft lip repair after we've already gone home. (This gives me a tiny assumption that we will be home before 3 mo???? Whhhhhaaaaat? Fingers crossed.) After lip repair, surgeons generally wait until 1yr of age to repair palate. That's all we know for now, and we'll know more when we meet up with them in an outpatient setting.

Remember when I said after weaning to smallest nose cannula, Piper would try eating by mouth?
Well, Occupational Therapy met with her today, and will continue daily, to train her on a special cleft palate bottle. This is a very patient, slow process, but she took in 8mL of bottled milk today by mouth, and that's a great start! This is the next big step in our coming home process. Staff must be confident that she can get her feedings in by breast or bottle before considering a home coming. Big big prayers about this, please! Physical therapy also came by and stretched with goober girl (she's a yogi already!) She was pretty worn out by the time we saw her at 5pm. It's hard work being awesome.

This week we will continue with bottle training and thriving on her new small nose tube. Also, docs have officially set a weaning schedule for pain meds and sedation that will start tomorrow, and continue until she is off those meds completely. Pray for her comfort during this time, and that she kicks drug withdrawals butt! You will already notice in pictures posted, that her alertness is much more apparent now that her sedation drips have been removed. Her big baby blues are sure loving watching her mobile, and checking out what mom and dad are doing!

That's about it for now! We'd love your prayers for continued comfort, great oxygen numbers, bottle feed success and for no icky germs sneaking into the NICU during this cold & flu season! Still can't believe I'm writing about Piper not having a breathing tube. Those lungies amaze me every day! Praise the Lord for all the successes we've celebrated thus far!

Piper's new nose cannula! Less tape pulling our eyeballs down!

Snuggle bunny

**Photos below courtesy of Children's Mercy Marketing/PR - THANK YOU STACIE!**

Our Komfy Kangaroo

Hi all!
Just a mini Piper update for the week. (Recap from last Friday: she no longer has her breathing tube and is currently on a CPAP nasal cannula.)

This week, staff has been able to wean down the pressure settings on Piper's CPAP, wean down morphine & versed sedation/pain meds, increase her feeding dosage to 38mL, and approve her for kangaroo care and non-nutritive momma feedings! She also had an great eye exam and is now breathing room air oxygen (no additional oxygen concentrations needed!) Her surgical incision, a horizontal line form her side to her belly button, looks fabulous and has healed nicely! We shall tell her about this battle scar one day, and beam with pride.

Kangaroo care? This is skin to skin time with your baby. Both mommies AND daddies can participate. This is great for healing, bonding and overall awesomeness! I got to kangaroo hold Piper for the first time this evening. The biggest change from regular holds? - I'm not as tense with tubes and lines by only holding her in the nook of my arm. They stripped Miss Pip to her diaper, me to my tank top, and we got some serious skin to skin snuggles. This is the first time I felt she wasn't breakable. She was my baby, lying on my chest, like babies do. She immediately burrowed her head into my chest and we experienced baby bliss for over an hour. I can't wait until it's daddy's turn!  One more way we can participate in her care and love on our precious girl.

Non-Nutritive Breast Feeding? This is a time for mommy and baby to bond, and practice latching and nursing before the real pressure of getting baby fed begins. Piper is still being fed breast milk through her NG (naso-gastric) tube, and will be until she weans down to a smaller nose cannula. In the meantime, they will have me pump beforehand, and Piper and I can get some practice in. This allows us to not be as tense during beginning feedings, not adding undo pressure to mom and baby if this shouldn't be successful. Piper was a bit too sleepy to try this evening, but I am sure excited for when we do! Cleft lip/palate babies need very specialized help with feedings by mouth, and this will be a great way for us to test out what is going to work for Piper before lip repair surgery. Essentially, breast feeding is a great option due to the fact that mom's pliable tissue can fill spaces a bottle can't - resulting in a successful latch. If this happens to not work, however, no harm no foul. We will just try specialized bottles, nose tubes, or even a tummy feeding port if necessary. This is down the road a couple weeks, so stay tuned! In short - yay for boob time! Girl Power!

So - what's next? A lot, it seems, but things are progressing so quickly with this child! Some future steps to begin adding to your prayer list are below:

• Weaning to a small nasal cannula and keep great stats with oxygen and breathing rates 
• Begin to breast and bottle feed successfully to maintain nutrients without IV help
• Gentle weaning off pain meds
• That a meeting with the cleft team is soon - plan established for repair 
• That a tiny assumption of coming home date is spoken about! YIKES!

As always, we are astonished at the love we have received, the help that's been offered, and the kindness of others during this time. Ya'll rock! Enjoy pics below of our kangaroo time, as well as our 4 week milestone!

 

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. 

Our Sweetest Update Yet...

You know,
Sometimes there aren't any words good enough. So today, I will not choose any words to describe our update, there aren't any.

I will post more on Piper's great stats later. For now, we are choosing to BE STILL.

8.27.14 - First time holding our girl 

 

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!