Friday, August 29, 2014

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. 




Wednesday, August 27, 2014

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 

 

Monday, August 25, 2014

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!


Tuesday, August 19, 2014

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! 




Thursday, August 14, 2014

Surgery Update - Hernia Repair

Hey all,
I wanted to post a quick update to get the prayer warriors going ASAP!

We spoke with Piper's general surgeon this afternoon, and he feels like she has reached a point in her stabilization/oxygenation that is right to take her to surgery. She is tolerating the weaning down of her blood pressure meds, her ventilator oxygen percentage, as well as keeping her blood gases stable for the NICU staff. Time for surgery ya'll!

Tomorrow, Friday, Aug. 15th at 12pm, Piper Grace Jarvis will go in for her Congenital Diaphragmatic Hernia repair. Dr. Iqbal will assess the severity of her hernia (testing shows small - moderate herniation,) and then use Piper's own muscle (her internal oblique abdominal) to repair the hernia. This surgeon, the top in his field, knows what he is doing. Instead of using a mesh patch to repair this, that would not grow with baby and has chances of hernia recurrence, he uses her own muscle that will grow with Piper! This means, in most cases, once this hernia is fixed.....IT'S FIXED. One thing to check off our list. Please send your prayers for Dr. Iqbal's steady hand and skill as he works on our precious girl tomorrow.

Most importantly for all to know, is this hernia repair will not fix Piper's lung function. This surgery just puts her body back into a better anatomical fighting shape! Her tummy/bowel will be back where they're supposed to be, her heart will shift back to the left side of her chest, and will this will give her lungs more room to grow, heal and breathe. Once the hernia is repaired, we will be back to our routine of daily watch n' wait for her oxygen saturation to get stronger and stronger by her own doing.

The big step that comes with hernia repair? With her belly back in its right place, NICU staff can start adding some scrumptious mommy milk to Piper's diet! Woo Hoooooo! (Mommy has been working hard at getting a head start on this, and Miss Piper already has enough milk stored to have a big party if she wants! Milk for all the babies at Piper's crib!) This little step is just one good step in the right healing direction for us, and we are excited for this change.

Another tidbit, is that ANY surgery is a big deal for a baby, and we must be prepared for the possibility that Piper might be out of sorts for a while afterwards with her stabilization. Please pray that her body kicks right back into gear and will not need too much additional assistance to stabilize in the days after surgery.

Lastly, I wanted to share our fun experience a night ago with Miss Piper. I wanted to keep this video to myself, but then realized that sharing would allow all of you to feel how I felt when our baby girl, the most awake and aware we've ever seen her, decided to open her big baby blues and chat with Matt and I. We have felt that Piper would tell us along the way that she was fighting. Sometimes your brain second guesses decisions, and we wonder if we are doing the right thing. Piper opening her eyes and watching her mommy and daddy told us she's here to fight. She's not sedate and unaware, she's here, letting us know we made the right decision to give her a chance. "I'm here mom, I hear you mom, I'm fighting mom!" Fight on Piper Grace! YOU GO GIRL!
video



Tuesday, August 12, 2014

Piper Grace - Birth Update

Ok, I've struggled to find the time to post an update in between...you know, having a baby, pumping, and navigating NICU as a new mom. I have so much to say, and had no idea where to begin.

Then, this Sunday, I received an email from my Dad. He has put words to our experience as a family that paint a great perspective I know will touch you as it did me. His point of view gives an outside look at the emotion, love, praise, worry and hope we've felt this past week. Read his story of love for his family, and I will make some further Piper status clarifications afterwards.
For reference: KC Crew refers to Matt and I, NC Crew refers to my brother and girlfriend.

From Ray Tyler Email, Sunday, August 10th, 2014

Sunday - the grass is mowed and I am treated to something Mom and have had very few of since you were born.  A house all to myself.  Its kinda cool with the quiet and all but I think you know where I'd rather be.
As I cool down from the yard work I can't help but reflect on the last 14 Days.  Monday before last brought our NC Crew in to Texas and we did get to play, but the closer we got to the 4th, the more trouble I had in any focus on anything but our KC Crew. We kept up the normal routine, but everyone, whether talking to the KC Crew, or the combined Texas/NC bunch, were really starting to lock in on the needs of our impending Monday induction. (Especially when it got quiet.)

Last Friday, 8/1 was brutal for me. I knew Mimi was on the ground safe at KC, and  I planned on shooting you guys a note before work required attention. What got the day off great was a Blog-Update posted by SuperPreggo at 3am.  By the time I read through Tara's words and dried my eyes I felt unusually calm and instantly remembered one of the last comments Mom shared with me before walking toward the airline counter.  "God's Got This" - her words are ringing in my ears as I type this.  I sucked-it-up and got my note posted to you and the 4 hours of work I needed to get through just flew by "PTL!" 

Reflection Fast Forward to Saturday, Aug.2 - and we are all together at the Jarvis Hacienda.  I really have tried to track back through the time from Saturday morning to closing the car door after kissing Tara on the head as she headed for the hospital Sunday night.  It's quite a blurrrrr and luckily there are pictures of a fat guy in a kiddie pool that help me remember we did keep pretty normal in that time frame. Bottom line was we managed to soak the old people, eat too much and finish Sunday's breakfast with Tara's favorite KC beignets. The whole time I was completely amazed by the grace and composure of our KC Crew.  As Matty pulled out of the driveway Sunday evening  (Aug. 3rd) I remember thinking DoDo would need a straight jacket.

Fast forward to the 4th about 2;30pm - the Doc just said we were going to take a break and let Miss Piper run her own labor schedule for a while.  A little rest was good for her mom, but Piper's prognosis hung over our waiting family like a "Tornado Cloud." 

Again I saw our KC Pair: scared beyond comprehension but with Grace and Resolve I can honestly say was inspiring.  There was my baby girl hand in hand with her soul-mate ready to do anything necessary to give Piper her best shot of life past a 6 minute prediction.

Then, it was 5:24pm.  Tara and Matt did exactly what they had set their minds to.  Piper Grace, after just a few moments of a rest on the outside of her Mommy's tummy, was ushered into my sight.  Actually, it was 5:24.34 when she was laid on the bed which was surrounded by 11 doctors and nurses who would rival any NASCAR Pit Crew.  As they got her airway established and oxygen flowed, our new young lady turned the prettiest shade of PINK any eye has ever seen. Step One - Airway...check!  Less than 30 minutes later, we heard a report from her Cardio Team that would confirm what we have been praying for - Miss Piper's heart was operating as any normal 1-Hour old Baby would be operating. Not perfect, but her missing aortic arch - WAS THERE!

There was our KC pair, now battling emotions of being derailed by the last three months of prognosis, thinking of what to do after the 1st 6 minutes.  Again, Composure and Grace took over their thought process.  As we chattered of a Miracle (which I will now stand on) Matt and Tara focused on what Piper's next step would be.

Over the next few hours, we witnessed the train of equipment and caregivers as Piper was relocated to the NICU, and a plan was established to expand and strengthen the little lungs our girl would need to operate at max-efficiency to get her to whatever the next step is.

All the time, our KC pair took in a calm steady stride.  As I look back on it now, I can't remember seeing Matt or Tara surprised by any of what we were seeing. I guess all I can say is GOD is good!  I know the days will grow very long before anyone can state Piper is out of the woods but, I know what we saw.

In reflection, like we said before the 4th of August.  I can't imagine walking this path with anyone but you.  As for Piper, The KC Crew did everything humanly possible to give her the best shot at life.  Then I believe our LORD made sure she would have a good heart in which to fight this battle.  As Matt & Tara gear their life to meet the needs of our newest family member, Prayer will be as much or more important.  LETS ROLL!!!!!!!

I love you all,
Dad, Grumpy, Dodo 

***

I couldn't have explained my feelings the day of Piper's birth any better than above. What I can do, is give you a bit more clarity of where we are right now:
  • Upon ECHO after delivery - it was discovered that Piper's aorta was in fact in tact, and not too small to function. (This was our bomb diagnosis....and praise God the little aortic arch was smushed and hiding behind some anatomy shifted by her diaphragmatic hernia.) Her heart is able to sustain her body as everything else needs to heal.
  •  Piper will now deal with, for an undetermined time, trying to stabilize her oxygen/CO2 saturation in her blood on only one "semi-good" lung. The other will not function for a while due to non-development/being smushed due to hernia. She has done a great job remaining stable thus far...and we will be watching these numbers until surgeons agree upon an acceptable oxygenation to take her to surgery. Knowing most babies get a tad bit sicker after having a major surgery, like repairing a diaphragm, they want her to be on as LEAST amounts of lung assistance before making this decision.
  • Repairing her diaphragm is step 1. Even after this repair, her lung function will be the same...until it's not. Only she will be able to tell us when her lungs are ready for no ventilator assistance. Repairing her diaphragm fixes her body and helps her strengthen her fight, but we will be watching these lungs in the NICU for quite a while.
  • Future steps, like step 2, 3, and home? Off the table for discussion right now. Living day to day being thankful our little Pip Squeak is alive is where we are right now. Are we "out of the woods?" NO. We have just sent Piper Grace, with the best medical team, prayer warriors, and baby heart, into the scariest part of the woods. There is no telling how long this journey will be.

For now, Matt and I are establishing a NICU visit routine with ourselves and with family, enjoying resting at home with Tallan, and taking every day as it comes. If Piper's oxygen has looked good all day, we call it a success. That's it. This will be our lives until a surgeon calls to say it's go time for step 1. And we are totally ok with that. We are in no hurry. God has this, and little miss fighting Piper will tell us when she is ready. 

Thank you all so much for your love and support. We clung to your prayers as we cried, terrified when it came time to push Piper into this big world of unknown. We still cling to our faith and hope that Piper is teaching us all something. "Be still...and watch me mom." Let's all be still, and watch God work through this 7lb 15oz, 21in baby girl.    

Mom's 1st Look 
Tallan meeting her little sis 
Mon, Aug 11th - 1 week old!