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!

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