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!) 

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!