Cute as (and with) a button

Well, we're home, but you probably already figured that out. I've been thoroughly chastised from not posting that on my blog, but after reading this post, I'm sure you'll fully understand why.

I left off before asking you to pray for two specific things for Camille. One was that her heart rate would stop dropping, and that she would stop having oxygen de-sats. Shortly after I wrote that last post, Camille's heart rate did in fact stop dropping as much as before, and she did not have anymore de-sats. Her heart rate was still dropping occasionally when we left the hospital, but not near as much as before. It remains a mystery as to why. Our GI was still concerned about it when we left, and our pediatrician was very concerned about it when we went in for an appointment yesterday. But, from a cardiology perspective, her heart structure looks great, and so we may never know why it was doing that. I think I'm okay with that--it is a little nerve-wracking to be home without the monitors, which means you are left to wonder if everything in her little body is working okay at any given moment. But I'm trusting it is, and so far, everything seems fine.

The other thing I asked for you to pray for was for Camille to gain weight. We went ahead and made the very difficult decision to put in a g-button (stomach tube, but I hate that term, so I won't be using it except here to explain what a button is). Although Camille can eat, she was apparently not eating enough, especially enough to play catch-up on her growth. Back in June, if they had asked me to put in a g-button, I would have said absolutely not. No tubes whatsoever. But now, we're okay with it. If it will help Camille grow, then we're for it. It required a minor surgery, which she had the day before we were discharged.

And so, we arrived home last Wednesday evening, Camille now sporting a little button, and our house now sporting some intimidating new medical equipment. Our bedroom decor now includes an IV pole and a feeding pump. I'm not seeing that it adds much style to the room yet, but maybe it'll get there.

The plan was to feed Camille by bottle during the day, just like we were doing before, and then pump her full of formula through her button for 10 hours continuously at night. So basically, we were supposed to only have to use the button at night for a continuous night feeding, and occasionally during the day if Camille did not finish a bottle. However, as she often does, our little princess had other plans. First, since we came home, she has decided that she does not want to take anything by mouth. Zilch, nada, NOTHING. She acts like her bottles are full of acid instead of formula. This means that not only do we get to do the continuous night feedings by button, we also get to do all of her day feedings by button as well, at least until she decides to take a bottle again. Second, Camille hates laying there for her button feeds. She squirms, wiggles, kicks, cries, etc.

It doesn't help that I have been fighting the feeding pump since it arrived in our home, and I can say without a doubt that the pump can claim full victory. I'm sure that if anyone peeked in our bedroom window during a feed, it would look like a 3-ring circus. There's me, trying to hold onto a tube that is flying around squirting formula everywhere, while at the same time trying to figure out what the rate of the flow should be, and wondering why in the heck the darn thing is angrily beeping at me. Then, inevitably, the tubing gets clogged, and while I am trying to get that fixed, stuff starts coming out of Camille's button and leaking onto everything. The whole time I am trying my hardest not to scream every cuss word in the book while my dog happily licks up all of the formula---the very expensive, we-really-don't-want-to-waste-a-drop-formula---off of the floor, and Camille lays wailing away. I feel sure she's not holding back on the cuss words as I am trying to, so it's probably better that I can't understand what she is saying yet. It's just not a pretty picture, but I'm sure it will get better, right? Right...

However, I can very happily say that every feeding pump mishap has been totally worth it because Camille has gained almost a whole pound in 11 days! I am overjoyed at that! We found out about this weight gain right when I was starting to have second thoughts about the button, not only because of the difficulty in figuring out how to work it all, but also because of all of my emotions surrounding it. We've known from the very beginning that Camille will likely have some level of special needs, and now we know that even more than ever after meeting with all of these various doctors, but there are some days when I can forget that. I can just look at her and think of her as a regular ol' baby. The button, however, is just this thing that is right there, staring me in the face, a constant reminder that Camille is not just a regular ol' baby. That's really hard.

On top of that, the button makes me feel like we were defeated in our fight to get Camille to eat. When she was first born, she had so much trouble learning to eat that the staff in the NICU warned us that she may never learn to eat at all. The moment they mentioned this, Jason and I became utterly determined to get that girl to eat. After a week of trying every feeding position and technique in the book, not to mention every bottle nipple on the market, we finally found what worked for Camille, and she began to eat. The staff that had evaluated her the previous week came back to watch her eat, and they were absolutely amazed. They literally called it a miracle that she improved her eating technique that much in that amount of time. We were so proud. And so, it is a little disheartening that we have had to go this route. The encouraging thing is that everyone fully believes that Camille will not have to have her button forever. It is just there to help her play catch-up for now, and then it can come out in the future.

So, despite my mixed emotions, I'm really okay with the button. An added bonus is that not only is Camille gaining weight with her button, but she is feeling much, much better now that her little tummy is staying very full (well, feeling much better when she is not hooked up to the dreaded feeding pump). She has started smiling all of the time now, and has even started "talking" to us. She also likes to "talk" to that pretty baby in the mirror too. She tells that baby in the mirror all sorts of stuff with this adorable grin on her face. I've begun to wonder about their conversations. I fear they may go something like this:

"You should see my Mommy battle my feeding pump. It's stinkin' hilarious! I've started refusing to take a bottle just so I can have more opportunities to witness the debacle!"

Wouldn't put it past her, folks. Our little girl is one of a kind, and we wouldn't trade her, button or no button.