Monday, September 15, 2014

Nose tubes, IV's & Pain Meds - Oh My!


First of all, HAPPY 6 WEEKS to Miss Piper Grace!
Time has been flying by as we watch this super girl thrive!

These past 2 weeks have been pretty chill with Miss Piper, but we've made quite a few steps forward in that time! For a couple weeks, docs have been weaning down the pressure settings in her CPAP nose cannula. The less force in pressure = the more Piper is doing on her own. This process also coincided with her neonatologists deciding to remove her pain med/sedation IV drips and switch to medicine by mouth (i.e.her nose feeding tube.)

With the above changes happening, staff took things slowly, as to not upset our little lady with lung changes as well as drug withdrawal. Slow moving is fine with us...we'd rather not have our little junkie out of sorts!

Removing the IV pain med/sedation drips means NO IV's! Not a single one! No ouchie in her arm, no ouchie in her leg, no ouchie on her noggin! NO IV's! Wow! This has allowed for better snuggles and movement while mom and dad hold Pipes. (For my nursing friends - Piper's meds for the last week have been morphine and ativan alternating every 3 hours by NG tube.)
*Side note: with this ativan making her sleeeeepy, I really haven't gotten a chance to try non-nutritive breast feeding. All in good time. *

Piper has increased her feedings to 72mL of breastmilk every 3 hours as well! Bigger feedings, along with some drug withdrawal as her med dosage changed, created a bit of a pukey situation for a couple of days...but Piper quickly adjusted and has been doing well not spitting up her meals & meds since. This was to be expected, and nurses have made sure she is keeping her weight up (or increasing!) One point for mommy - they have not had to fortify my breast milk with any formula for extra calories! (I must be a big boobin' deal!)

Over the weekend, Piper proved comfortable enough to not even need her CPAP nose cannula anymore. She has moved down to an even smaller nose cannula, with no positive pressure needed! This nose tube allows us even MORE movement freedom, as well as getting to see more of her face! (Less taping!) Her heart rate and oxygen saturations have held strong even down on this smallest cannula. YAY PIPES!

Plastics, aka the Cleft Team, consulted during rounds last week. They've tentatively made a plan to meet with us at 3mo to discuss cleft lip repair after we've already gone home. (This gives me a tiny assumption that we will be home before 3 mo???? Whhhhhaaaaat? Fingers crossed.) After lip repair, surgeons generally wait until 1yr of age to repair palate. That's all we know for now, and we'll know more when we meet up with them in an outpatient setting.

Remember when I said after weaning to smallest nose cannula, Piper would try eating by mouth?
Well, Occupational Therapy met with her today, and will continue daily, to train her on a special cleft palate bottle. This is a very patient, slow process, but she took in 8mL of bottled milk today by mouth, and that's a great start! This is the next big step in our coming home process. Staff must be confident that she can get her feedings in by breast or bottle before considering a home coming. Big big prayers about this, please! Physical therapy also came by and stretched with goober girl (she's a yogi already!) She was pretty worn out by the time we saw her at 5pm. It's hard work being awesome.

This week we will continue with bottle training and thriving on her new small nose tube. Also, docs have officially set a weaning schedule for pain meds and sedation that will start tomorrow, and continue until she is off those meds completely. Pray for her comfort during this time, and that she kicks drug withdrawals butt! You will already notice in pictures posted, that her alertness is much more apparent now that her sedation drips have been removed. Her big baby blues are sure loving watching her mobile, and checking out what mom and dad are doing!

That's about it for now! We'd love your prayers for continued comfort, great oxygen numbers, bottle feed success and for no icky germs sneaking into the NICU during this cold & flu season! Still can't believe I'm writing about Piper not having a breathing tube. Those lungies amaze me every day! Praise the Lord for all the successes we've celebrated thus far!

Piper's new nose cannula! Less tape pulling our eyeballs down!
Snuggle bunny
**Photos below courtesy of Children's Mercy Marketing/PR - THANK YOU STACIE!**


  1. God is good! Thanks for keeping us updated! I love hearing the great news and getting to pass it on to my prayer warriors! Continued prayers your way

  2. I remember wishing you guys strength before you went in for her delivery and look at that little beauty now, so happy to see her thrive and getting stronger. My little girl was born with a cleft palate (luckily no cleft lip), but I remember how that special bottle was a life saver for us. It took us a while to get her to drink. She had her surgery at 9 months and while it was a hard first year for all of us, she was and still is a little fighter! Just like your little wonder! Keeping little miss P. in our thoughts!

    love from Belgium,