Wednesday, October 29, 2014

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!

Wednesday, October 15, 2014

Choosing to Share Our Story...on Film

Greetings all!
We have had a slow, uneventful couple of weeks after Piper's G-tube procedure. We've learned slow is good, boring is good, nothing new during doc rounds....goooooood. God is good.

Piper's G-tube procedure was a success, she quickly extubated 2 days after surgery, and has been taking FULL feeds through her new tube ever since! She is down on her pain meds,  up on her awake activities, and is weighing in at 11 pounds 2 ounces ( she was born at 7lb 15oz.) We can safely say that we are on the home stretch of this hospital stay. Just a bit of oxygen weaning and drug withdrawal to get through. Estimations of home by Halloween might be close...or maybe by Thanksgiving if we need more time. To be honest, we could care less. The fact that we are here, talking about home procedure, is amazing, and I'll wait as patiently as I can until there's a specific date to shout from the hospital roof!

That's it, currently, about Miss Piper; but I'm blogging to discuss something we've been excited to share with you! You've seen me post bits n' pieces about our "camera crew" or "producer," and now's the time to spill the beans!

About the same time that I blogged our very first Piper blog, the "Bomb Diagnosis" blog, we were discussing sharing our pregnancy journey on a docu-series our hospital was working on. These people came into our lives at the exact moment we were trying to handle preparing for Piper's death with our faith, with grace, and with family by our side.

This docu-series would go on to follow doctors, nurses, patients, and families all over the hospital, dealing with multiple pediatric diagnosis. They aim to show this world class hospital, with world class physicians, giving world class care to the world's smallest humans.  What an awesome thing to be a part of.

We first agreed to this docu-series, knowing that our story would be painful to watch. We were preparing to birth a child, then mourn her death in a very short amount of time. Who would want that on film? But wait...
once mentally prepared for our journey, we concluded that sharing our story with others was such a perfect step, and gift God had given us to spread our faith. We would agree to this, to try our best, to be an example of a young family relying on God and each other in a time of utter sorrow. We thought if we could show God's Grace when mourning Piper, and touch one person, one family in need, that it would be worth it. We had no idea when we would be able to watch ourselves go through such a loss on camera, but we knew we would regret if we didn't capture our journey, even for ourselves. So that we did - filmed our journey...every bit of it. What a journey it's turned out to be!!!!!!

Our camera crew has been with us through scary meetings, somber ultrasounds, packing for the hospital, my water breaking, my labor, Piper's birth...and every crazy miraculous event since she came into this world! They were in the surgical room when Dr. Iqbal fixed her belly, they were there when she came off the oscillator, they were there when we held our girl for the very first time. They were there. What a blessing they've been. They have captured the miracle that is Piper Grace, and we get to share that with you, with strangers. This journey has changed from one of graceful one of miraculous triumph, and we get to watch it unfold on film. I am so excited that our story has changed, and am so glad we decided to share, to witness, to use Piper as a living breathing example of our God's work in action!

For our KC folks - the docu-series "Inside Pediatrics" will air, in 6 episodes, here locally on KMBC sometime in December, and we will keep you posted. For others, I'm hoping once episodes air, that I will be able to post links to them online for all to view. We can't wait for you to see!

I look back to the beginning of filming, when we thought the worst was upon us, and cannot believe how far we've come...then I realize I will re-live the fear, the pain, the miracle when we watch it on air. It will be tough to watch, but I am nothing but grateful for the experience. All of us grown ups want our lives to mean something, to do something that touches another's life, to make a mark on this world before we leave it. Piper Grace is touching more lives than we could ever imagine with this docu-series. She renews the faith of the faithful, she whispers hope to the non-believer, she is an example of the power of prayer, and we are so proud to share her with you! She is leaving her mark, and what a mark it will be!

Our producers, Megan & J, with us on the first day we held Piper!

Producer Megan caught on camera!
Producer Megan, in blue scrubs, was the first to sport her "Lucky Chucks!"