Sorry to leave everyone hanging in suspense. Via my facebook posts, most of you probably already know that Izzy came home a week ago. It's been so great over the last week to have Meg and all of the girls back at home, together again. Izzy probably could've stayed in the hospital for a couple more days, but they moved her from a very nice room, down to the dark, no-window dungeon on the basement floor. At that point, the nursing care is much more sparse and Meg would've been taking care of most of Izzy's needs anyway. So, we just decided we could do that at home.
So far, she's been doing great! We continued the breathing treatments for a few days, but weaned her pretty quickly. What's more impressive is that, since last Thursday, she's finished almost every bottle by mouth without the need for the NG tube! Plus, her reflux, or lack thereof, has been improving as she's been recovering from her bout with RSV. I know it's not completely gone, but she hasn't been spitting up either, which is a great sign that her lower esophageal sphincter (LES) is regaining some tone and helping to keep her food down.
This morning, we woke up to a clean-faced Izzy, which if you've been reading this blog for any length of time, isn't a good thing. The little escape artist wiggled one of her tiny infant arms from what must have been a very poor swaddling job and pulled everything off. Her NG tube was laying on the ground next to her, as was the nasal cannula with tape attached. What was she doing? Smiling, of course. We were a little flustered at first, but we decided it was actually for the best. We had been looking for an excuse to try without the NG for a couple of days. We wanted to see if having it out might actually help a little with her reflux, as one of our docs previously described it as "acting like a wick" in her belly, providing a path for the food (and acid) to follow up alongside of. Also, before we taped her cannula back to her face, I measured her oxygen saturation. She was actually doing quite well from a pure saturation perspective, but her respiratory rate was up and her retractions were definitely a little deeper than normal. Basically, if she had to survive without oxygen, she probably could have, but it makes her so much more comfortable and has definitely helped her to relax and enjoy life a little more. By far, the biggest impact it's had has been on her eating. So, we're keeping it for a little while longer.
Right now, Meg's driving us down to Comer Children's Hospital downtown. Izzy's sleeping in the back after finishing another big bottle of formula. By the way, Neocate is freakin' expensive, especially as Izzy gets larger and starts consuming more volume. We're on our way to see Dr. Andrews for a follow-up visit. We were worried that we wouldn't have much to report since she was doing so poorly after first coming home from the hospital. Now, she's like this completely different baby, except for the huge ear-to-ear smile she tosses out frequently--that never changed :)
All right, so we just left Comer and I get to be chauffeured around in my own car for another hour. It's nice to not be the one driving sometimes, though I have to admit, Meg's driving scares me a little (a.k.a. "Distracted Driver"). Dr. Andrews agreed with our plans to try it for a couple of days with no NG. It will most likely mean that we'll have to get up in the middle of the night 1-2 times to help her make up the lost volume from the nighttime continuous NG feed, but if it can help us avoid another surgery (the G tube), then we'll do what it takes to slowly increase her volume the "normal" way.
We also met with one of the GI docs that works with Dr. Andrews, Dr. Sentongo. I can't remember whether I wrote about our experience with the last GI doc we saw (not. nice. at. all.), but Dr. Sentongo's bedside/patient manner was worlds apart and we left feeling so much better about our next steps.
To sum it up, for now, we're going to try to see if we can make it without the NG tube. She's going to stay on a very low volume of oxygen. We're going to gradually, but intentionally, increase her food volume to slowly stretch her stomach, but also to test how well her LES is maturing and see if it will allow her to handle more volume without spitting up. We'll go back in a few weeks to discuss her progress and next steps, but for now, she's just as every baby should be--happy!
The other girls are doing so well and getting so big very quickly, too. Right now, all is good in la casa de DeBauche.