Sunday, September 28, 2014

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!) 

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