The Little Things....

When we arrived at the hospital yesterday, MFH and I were supposed to go to admissions and finish some stray paperwork for Little Bird. We were planning on swinging by the office on our way out. AKA, we had no friggin' idea where it was yet and needed directions. But as it turned out, we didn't have to even ask. Not long after we settled in with the baby did a clerk come to our room to help us. I'm mentioning this because it was just the most pleasant hour spent with her, even though the forms only took five minutes to complete. She had everything ready for us in the moment that she walked in. And having had already seen a great deal of Little Bird's personal information, she presented us with a very endearing and hand-made gift she created for our baby. A little, white, bell-shaped ornament for our Christmas tree. Little Bird's very first one. So unexpected, and so thoughtful! She sat with us for a while, just talking and listening to Little Bird's story. I can't tell you how much of a gift meeting her has been. After spending over five months in the hospital, to have and know people who take the time out of their day to put a smile on your face? It's like a hug from an old friend.

Little Bird pulled through the second scope with flying colors. Before the procedure, MFH & I were asked to consent to propofol as a precaution. They were going to attempt the procedure with her sedated, but in the event that she couldn't tolerate it, the fastest way to put her under would be this drug. When used properly and by an educated anesthesiologist, it is fairly safe. Still, it's worrisome when it's being used on your nine and a half pound baby. 

But, like the amazing Little Bird that she is, she remained calm throughout, with the exception of her becoming scared at the very end when the camera was coming out. The doctors were able to get an incredible look at her lungs and airway. And I can very happily say that her prognosis isn't any worse. They did find evidence that her airway had collapsed sometime between having the tracheostomy and being admitted into the PICU. However, it is healing, and now very stabile. An enormous relief to hear, this means she has a shot at decannulation. But they've decided that it's best to give her the winter months to grow and become even stronger before attempting to ween her off of the vent. Her lungs are still very severely scarred. But her pulmonologist tells us that he has every hope in the world that, come this spring, she should be able to breathe on her own. To hear those words from this specialist's mouth felt like we hit the lottery. It really is the little things.

Chillin' After The Scope

Telling Us How Brave She Was

"There Was Nothin' To It!"

Comfy and Happy!

Considering The Idea Of A Puppy

Big Yawns, and Tiny Bows!

Gettin' Some Momma Love....

"When I Make This Face, I Get Kisses!"

Look At How Big She's Getting!

"Daddy, I Made You A Present!"

"You Talkin' To Me?"

"Dad, You're Bananas!"

"But You're Soooo Funny!!!"

"You Crack Me Up!"

"You Tell The Best Stories!"

"I Think I Pee'd My Pants!"

"Whoa!"

I LOVE THIS FACE!

"That Was Intense!"

"For Real Real!"

MFH and I expected her to be pretty miserable afterward, though, she was anything but. She did have a slight temperature, and required a bit more suctioning than usual, but considering everything? She was so brave. She tolerated a trach change and a bath, as well as bottle feedings almost immediately afterward. For the first time since her birth, I was able to feed my daughter last night. It. Was. Precious. She signaled that she was hungry well before her scheduled feed, and so we got comfy and had at it. She ate like a tiny champion, taking the bottle with gusto. That was, until Daddy began making silly faces at her and she decided that playing was far more important in the moment. But, she took almost half an ounce before becoming distracted. I can say with all honesty that even if it takes her an hour to finish a feeding, it is such a wonderful way to spend sixty minutes. I don't think I will ever grow tired of spending that kind of time with her. 

Aside from her snoozing in my arms for a half hour, the rest of her day was spent wide awake and being soooo playful. She did have some medication during the scope that caused her to experience tachycardia, with her machine almost constantly alerting. But this isn't uncommon or unexpected, and it wasn't anything serious. Actually, she found it quite amusing that the monitors would beep and half the staff would run into her room. I think she just likes to psyche the nurses out. She's definitely been keeping them on their toes!

Our plans for the next several weeks will be to bulk this little lady up as much as we possibly can. Today, she began a regimen of breathing treatments and medications aimed at increasing her lung function in preparation for when the big day finally arrives. She is already showing some serious improvement from this. For the first time since...ever, she withstood three major vent pressure setting change trials this afternoon. Only three days ago, she couldn't handle these adjustments, at all. I'm also keeping my promise to her. The deal I made with her months ago. I remind her every day that as soon as she gives that breathing tube back, she can have a puppy, and even pick it out herself. Looks like she really, really wants that pet!

I have to keep it in the back of my head, the truth that an attempt is not a promise. Even months from now might be too soon. But knowing that there's one person in this sea of white coats who thinks it's worth a shot means so much to us. If she does happen to make that leap and leave the ventilator behind, for good? It will be awesome. If she can't? We will still have hope. Hope that if she's able to at least try, then she will eventually succeed.

 
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