Ruby has been quietly making progress and doing great. Today they weaned her morphine down to 140, and her Versed is still at 160. Yesterday they switched her from the Drager CPAP that uses nasal prongs to one that uses a nasal mask -- no more swim cap. They periodically switch babies between the two to minimize irritation and soreness in and around their nose. Her CPAP pressure setting went from 5 cmH2O to 4 cmH2O, which is basically the lowest setting either machine will function at. In real-world units, that's about 0.08 PSI. In other words, she's needing very minimal support. They've been stepping down the oxygen she's breathing as well, and she got down to 25% today (normal "room air" is 21%). However, we bumped it up to 28% tonight for a babygirl makeover.
Tuesday night, the IV in Ruby's arm stopped working, and it was unnecessary anyway so the nurse took it out. The night nurses usually bathe and change the babies clothes and beds, and with the IV out she was able to wear clohes again -- no more blue CHOP gowns! And you guessed it... her tube count is down to TWO!
- broviac central line
- nasogastric feeding tube
She'll probably keep these two for a while. The central line will stay in until she's weaned completely off the morphine & Versed. And the NG feeding tube will be there until she's able to get 100% of her nutrition from bottle or breastfeeding. We can't try direct oral feeds like this until she is on the low-flow oxygen canula and her breathing rate is consistently below 70. She's getting there.
So this morning we came in and the nurse had put her in her purple Daddy's Girl pajamas:
The nurse had been promising us a chance to give her a bath, and we finally were able to take the opportunity. We disconnected all the beeping monitors and removed all the sensors and peeled off (almost) all the tape and removed the CPAP mask , and Ruby pitched in by personally yanking out her own NG tube. This is the startled Ruby we discovered underneath:
We wiped her down with some warm, mildly soapy water and rinsed off with a cloth soaked in clean water. We even sat her up and washed her back and the back of her neck and head. She then got lotion all over and a little mineral oil on her scalp, since she has a touch of cradle cap (dry flakey skin). Afterward, the nurse demonstrated how to replaced her NG tube.
We then tried putting her in a new outfit that was going to include some pants that were optimistacally labled as for "0 - 3 months", but they looked like MC Hammer pants on her:
We'll save those for later.
Instead, we put on her Rock & Roll kimono:
She handled her day at the spa very, very well and only fussed a couple times. Her voice is getting stronger, but she still doesn't cry full-volume. But she's usually so easy-going and happy that she doesn't get much practice.
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What a glorious day! It's so
What a glorious day! It's so great that you got to bathe her and all. And only 2 tubes. She's come a long way baby!
Ruby looks adorable in all
Ruby looks adorable in all of those outfits, including the MC Hammer pants! And I love to hear that she is easy-going and happy. You guys are awesome. Love, Natalie
Ruby's looking better
Ruby's looking better everyday. I'm sure when you show her the pictures of this time of her life, she will yell at you for posting the picture where her looked stoned. Or maybe you better not show that picture to her until she's past the rebellious stages of life. It might give her the wrong idea! Ha Ha!
Yay for a spa day and a
Yay for a spa day and a rockin' kimono! It's so good to see the tube/line count coming down. Definitely a sign of a baby girl getting stronger and stronger all the time. Way to go rock star Ruby!
Hugs and love from the 'Lou-
Tami, Chuck, and Aisling
Looking good, Ruby! I like
Looking good, Ruby! I like those MC Hammer pants. "Can't tough this..."
Love and hugs from IA
Love her in the pants!
Love her in the pants! Although MC Hammer sounds will now be stuck in my head the rest of the day..........
I have such a big happy
I have such a big happy smile on my face. What wonderful news!!
HOORAY! Ruby is my kinda
HOORAY! Ruby is my kinda girl! Rock and roll!
It's great that Ruby is
It's great that Ruby is doing so well!!! And it's nice to see Mom and Dad are having fun dressing her up, lol.
Keeping you in my thoughts.
It is so wonderful to see
It is so wonderful to see Ruby doing so well!
Her kimono is super cute, too!
Take care of each other and come home soon.. Austin misses all three of you!
It's so great to see your
It's so great to see your pretty girl's face without all those tubes! Keep up the great work Ruby!
I love the kimono!!!
WHAT HUGE MILESTONES! We
WHAT HUGE MILESTONES! We are so proud of how far she has come and the answer to so many prayers! ONLY TWO TUBES! Is she able to eat breastmilk through the tube now that she isn't draining through her lungs? We are praying for a quiet day and many more wardrobe changes! Nat, Lou Ann and kids
Heya, Ruby! Thanks for
Heya, Ruby! Thanks for giving us some Face Time! So nice to see you (temporarily) Free like that.... now visualize your goal, sweetie, and take the temporary out! :-) :-) :-) I have little doubt that this will be the first of many days with multiple wardrobe changes, though the reasons change as you get older.
Ruby is rockin' the
Ruby is rockin' the kimono!
Marie
What a star! She is gorgeous
What a star! She is gorgeous and looks like she is truly enjoying herself! Love those MCHammer pants, reminds me of when we tried to put Alina in 0-3 :0). And way to go on the canula- what nasty things those are. Keeping fingers crossed that Ruby will continue to get rid of the remaining 2 tubes- hope the feeding goes smoothly.
Oh, these are such sweet
Oh, these are such sweet photos! Is this the first time she's been able to wear non-hospital stuff? Wow. :)
She looks like she's doing really well guys. Whenever I think stuff is going on that's difficult in my life, I remember that I'm not fighting to stay alive like some kids and it takes me down a notch. Ruby is so inspiring, you guys.
Keep up the good work!!!
Lots of love,
Missy, Larry and Anthony
I am so glad to see ruby
I am so glad to see ruby doing so well keep up all of the hard work
Shannon Carter
But I LIKED the MC Hammer
But I LIKED the MC Hammer pants!!