Ruby is making awesome progress. All the doctors are always saying what a little rockstar she is. Here's some photographic evidence:
Tube count is down to ONE!! All that is left is her NG tube, so that means no more big machines in the room!
She also has a regular oxygen cannula in her nostrils and the usual monitoring wires taped on her feet and chest. But no longer is there big equipment that she couldn't go home with. One by one, we're crossing off all the reasons she can't go home. The biggest ones now are sedation weaning and weight gain. Her morphine & versed weaning schedule is 21 days, but we expect it to take a little longer, since Ruby always seems to follow her own schedule. And the weight gain will take care of itself, partly due to this next big development:
Ruby has started bottle feeding and breastfeeding for two out of her eight daily feedings. Here is Ruby's first encounter with the bottle:
And here is Dad's first encounter with the bottle:
Twice now she's taken about 10ml out of the bottle (a full meal is 60ml) and she had a good 15 minutes of breastfeeding last night. This is a HUGE accomplishment, because CDH babies usually have such a strong oral aversion after being intubated for so long that they will refuse bottle and breast. It's a lot of work for her to feed through her mouth, and babies usually lose a little weight when they start due to having to expend extra calories to get a meal. But we will continue to suppliment her through her NG tube with fortified milk for the time being. The NG tube is also essential for administering yucky-tasting medications. Off the top of my head, the oral meds she's taking are: morphine, Versed, Diuril, potassium chloride, Zantac and vitamins.
Ruby is very happy with all the progress:
I am Erin's Mom and have
I am Erin's Mom and have been following the amazing story of your child. Her progress is truly miraculous. I couldn't be happier for the three of you. The best of luck and I look forward to seeing the first pictures from the nursery.
Sweet, sweet baby girl! It
Sweet, sweet baby girl! It is great to keep hearing such good news. Take care of all of you!
WOW!!!!! I've been trying to
WOW!!!!! I've been trying to keep up with the blog but haven't had time to post. I'm STOKED that she's doing so well and breastfeeding too! It makes all those long days of pumping feel more worth it, I'm sure. What a feisty little girl, defying the "usual" things that CDH babies experience. HOORAY!!!! And, I love this little girl's smile. :)
Love from the 'Lou-
Tami, Chuck, Aisling, and William
We at headquarters are
We at headquarters are thrilled and can see that you are making great strides in becoming ready for your upcoming state-side tour! And... in the absence of a profesional wardrobe consultant we are very proud of the choices you are making. We are especially intruiged by the pink striped outfit and are sure that the designer had a "rock star" in mind when creating this unique outfit. Keep it up Ruby Girl. The World Awaits YOU!
What a happy little
What a happy little munchkin! So wonderful to see you holding and feeding her, and it sounds like she is doing fabulous! Great news!
Pam
Is that a smile I see? We
Is that a smile I see? We are smiling here too, Ruby! Sarah
Those pictures are
Those pictures are beautiful. Ruby looks adorable in that little pink-striped outfit and seeing you two feed her brightened up my day today! Yay for Ruby. Love, Natalie
Fantastic news! keep it up
Fantastic news!
keep it up Ruby!
Rockstar Ruby! We have been
Rockstar Ruby!
We have been reading about you daily and checking on your progress and we're so THRILLED to hear that you are doing so well! Way to go Ruby! You can hear the excitement in Mommy & Daddy's writing... We can't wait to meet you. You have reminded us how precious life is and how fortunate we should all feel. Although you don't know us yet, we're here in Austin and we're cheering for your continued progress every day.
Yay!!! All smiles here. :)
Yay!!! All smiles here. :)
I've been keeping up on a
I've been keeping up on a daily basis. What fantastic progress she has made. I am so happy for all of you!!!
OMG... I am so happy to hear
OMG... I am so happy to hear the wonderful news! What a rockstar she is!!! She looks great and wow eating already and breastfeeding... SUPERSTAR!! I am sorry I missed your call, I will trying calling u tomorrow! Take Care and give Ruby a kiss from us Jersey folks!
HUGS
Joanna