Today is a much better day!
After waiting ALL day yesterday and ALL night due to emergencies in the POD that were more important (we’ve been those emergencies MANY times so I totally understand!) we finally extubated right before shift change this morning at 6:30 a.m.! They woke me up to leave the room, and while I’m now pretty sleepy today, it was totally worth getting that silly tube GONE!
We weaned to her friend Vapotherm, however she did fantastic and we weaned it within the first 6 hours. We are now on regular nasal canula at 2 liters satting 100%, so hopefully will wean more as the day goes along. Our goal is 1/2 liter, which is what we were on when we were home.
New issue to pray about: She had two watery stools today, and since that was a change and we’ve been concerned about gut issues, they are sending samples for culturing and checking for an ucky thing called Cdiff. We are confident she doesn’t have it (evidently Cdiff has this HORRID smell that is worse than normal poop smell, and hers doesn’t have the smell) but we are doing it as a precaution.
We are also closely monitoring her glucose level, as the steroids she is on effects it, making us have to be in an insulin drip. Poor baby has to have a finger poke (we are trying to use her heels too but they don’t bleed as well!) every hour! See picture below of her poor baby fingers!
Her BNP was down a little today to 3000 (from almost 4000.) Still WAY too high, but good to see a downward movement. To me, this points more toward rejection, which we are treating (thus the reason it would go down) so I’m satisfied with that.
Mommy’s personal biggest concern at the moment is her echo. It looks GREAT, except for high pressures in the right side of her lung. There is some concern about pulmonary hypertension which to me is a very scary thing. They redid an echo today, so we are hoping and praying the pressures are down a lot, otherwise they might have to start her on a med for that, which is still a very NEW med. All that is still in a ??? state so I’m trying not to put cart before the horse and worry about it.
Also had a great discussion with pulmonology about her oxygen requirement, and I’m feeling much better about that as well. What is NOT so great is that there is a real chance she’ll have to stay on oxygen for a while, like potentially years, until she outgrows her chronic lung disease. On a good note, I understand why this is much better, and I can accept it more than I did before. Once we get to her “happy” spot, we’ll wean much slower now.
That said, if she surprises us and wants to get off oxygen, Mommy won’t be disappointed at ALL!!!!And that she is on a relatively small amount at home before is a good sign that it won’t take TOO long.
In the mean time, I have my princess back! I held and rocked her for a while, she was sitting up a little bit in her crib, and I played peek-a-boo with her and she was SMILING really big for me!!!! It made Momma’s heart feel SO SO SO good! Didn’t get a pic of the smile in time, but I will eventually and share it with you!
On another fun note…
A BIG thanks to Amanda (Heart-baby Chance’s Momma) and her Momma who brought Melissa (Anna Reese’s Momma) and I GIGI’s cupcakes today and baskets of goodies!!!!! We are so excited about them! Little things thrill us these days!
And did I mention that Anna Reese and Annabelle are right next door? We have a sliding glass door between us, so spend much time gabbing and plotting (literally…) which helps tremendously.
And thank you to my Momma for taking me to dinner last night so I didn’t have to endure another meal at Subway! (I love Subway but you can only take so much of it!)
Last night… poor tuckered out baby waiting to get that tube out!!!! But she was wearing the bow Miss Brittany got her for her birthday, so she was stylin’!
Look! No tube!!!! I <3 MY BINKY!
Tubeless… she was SO excited to roll! I turned my back for just a minute, turned around, and she was sideways on the bed!
She also is having fun waving her leg around… getting some exercise!