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!) 

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!**

Wednesday, September 3, 2014

Our Komfy Kangaroo

Hi all!
Just a mini Piper update for the week. (Recap from last Friday: she no longer has her breathing tube and is currently on a CPAP nasal cannula.)

This week, staff has been able to wean down the pressure settings on Piper's CPAP, wean down morphine & versed sedation/pain meds, increase her feeding dosage to 38mL, and approve her for kangaroo care and non-nutritive momma feedings! She also had an great eye exam and is now breathing room air oxygen (no additional oxygen concentrations needed!) Her surgical incision, a horizontal line form her side to her belly button, looks fabulous and has healed nicely! We shall tell her about this battle scar one day, and beam with pride.

Kangaroo care? This is skin to skin time with your baby. Both mommies AND daddies can participate. This is great for healing, bonding and overall awesomeness! I got to kangaroo hold Piper for the first time this evening. The biggest change from regular holds? - I'm not as tense with tubes and lines by only holding her in the nook of my arm. They stripped Miss Pip to her diaper, me to my tank top, and we got some serious skin to skin snuggles. This is the first time I felt she wasn't breakable. She was my baby, lying on my chest, like babies do. She immediately burrowed her head into my chest and we experienced baby bliss for over an hour. I can't wait until it's daddy's turn!  One more way we can participate in her care and love on our precious girl.

Non-Nutritive Breast Feeding? This is a time for mommy and baby to bond, and practice latching and nursing before the real pressure of getting baby fed begins. Piper is still being fed breast milk through her NG (naso-gastric) tube, and will be until she weans down to a smaller nose cannula. In the meantime, they will have me pump beforehand, and Piper and I can get some practice in. This allows us to not be as tense during beginning feedings, not adding undo pressure to mom and baby if this shouldn't be successful. Piper was a bit too sleepy to try this evening, but I am sure excited for when we do! Cleft lip/palate babies need very specialized help with feedings by mouth, and this will be a great way for us to test out what is going to work for Piper before lip repair surgery. Essentially, breast feeding is a great option due to the fact that mom's pliable tissue can fill spaces a bottle can't - resulting in a successful latch. If this happens to not work, however, no harm no foul. We will just try specialized bottles, nose tubes, or even a tummy feeding port if necessary. This is down the road a couple weeks, so stay tuned! In short - yay for boob time! Girl Power!

So - what's next? A lot, it seems, but things are progressing so quickly with this child! Some future steps to begin adding to your prayer list are below:

  • Weaning to a small nasal cannula and keep great stats with oxygen and breathing rates 
  • Begin to breast and bottle feed successfully to maintain nutrients without IV help
  • Gentle weaning off pain meds
  • That a meeting with the cleft team is soon - plan established for repair 
  • That a tiny assumption of coming home date is spoken about! YIKES!
As always, we are astonished at the love we have received, the help that's been offered, and the kindness of others during this time. Ya'll rock! Enjoy pics below of our kangaroo time, as well as our 4 week milestone!