She smells like Skittles!

...Yea. It's time. We went and saw the GI specialist this week. Her weight is still hovering right at 16 lbs. Even though, since getting her flavored formula, Keira's eaten a few bigger bottles than usual, she's still averaging her usual 15 ounces per day. Her height to weight ratio still isn't too bad. So the tube isn't an emergency, but Jeff and I are now wondering if Keira might have a little more energy with more calories in her. For the past couple of weeks, she's seemed less energetic, more fussy, and less willing to show off her more advanced skills.

Bottle with a vibrating toy in it: one of the many ways we've tried to get Keira to eat more. 

The doctor suggests an NG for a 3 week trial period. We'll experiment with giving K more food through the tube. If she tolerates it well and thrives, we'll schedule a more permanent G tube to be inserted through her abdomen.

Initially, after Jeff and I decided to go ahead with this, I felt relief. I've felt relief each time we've come across a big decision with her...ER visits, hospitalization, etc. I used to wonder if that made me pathological, that I almost even looked forward to these things. But now I realize it's not that I want her to be really sick or impaired, it's that these interventions seem inevitable and the ambiguous times of not knowing whether they are necessary are stressful.

So, like I said, initially I was relieved. Hopefully Keira will be more lively and alert and we won't have to worry anymore about whether she's getting enough. But in the few days since we made that decision, I've been WIPED. OUT. I've had some weird migraine  symptoms, slept a ton, and have recognized some old "stress patterns" in myself like wanting to eat a lot of junk food and spending hours browsing for clothes online.

I sort of feel like, in parenting Keira, I've been walking this tightrope of hope and acceptance. I've been getting pretty good at it. But the tube-feeding issue has come to a head and I've been knocked down. I'm not hurt cause I've been caught in this great net. I plan to get up again, but right now I'm resting safely in this place, wondering how I'm going to get back up there.

The tube, I suppose, is a big, fat, obvious, tangible piece of evidence that really, Keira isn't thriving. She's not progressing. After a wonderful holiday full of family time and plenty of laughter, we had a rhythm going, feeling some real normalcy. We've been thrilled that she's been healthy, even when flu and strep throat have been through our home. This kind of took the wind out of me. Because it isn't just the tube feeding, it's the reminder that Keira's brain is so underdeveloped. Her muscles are so underdeveloped. And though she may continue to grow and develop, little by little, she may also continue to deteriorate and decline, little by little. Her lack of core body strength puts her at risk for so many other problems and complications that, at any given time, could steamroll downhill. It's still a possibility that she won't live a long life. It's a possibility that we've already seen her at her happiest.

On a lighter note, the nursery personnel at church took the liberty of giving Keira her first ponytails last week! It hadn't occurred to me that her hair was even long enough. Actually, her hair has grown a ton in the past few weeks. She has these amazing ringlets when her hair is wet and when it's dry, it's a cute-crazy mess.

Like my pigtails?

I know he's back there!

Love the "Smothers Brothers." 

Watching TV! This is progress!

I'll bite your nose, bro!

Strawberry is one of K's favorite formula flavors, it seems. Cynthia pointed out the other day that it makes Keira's breath smell like Skittles. I thought that was so cute. Plus, I needed something happy to title this post!!

Jeff, Keira, and I will be at St. Luke's downtown all day on Wednesday for her NG tube. We shouldn't have to stay overnight. Mostly, we just need to be there through a few feedings to make sure everything is working properly. I'll keep you posted!