Conquering Cold Feet

We're up early this morning.  Not because the sun is creeping through the windows or because the birds happen to be chirping a little closer to our quiet home, but because today, Isabelle is going in for surgery and needs to be at Comer Children's Hospital by 6:00am.  By the time she's done, she'll have one less tube on her face, a new tube on her belly, and a device at the top of her stomach that will help control her GERD.  She'll be the proud new owner of a G tube and a Nissen.

I'd be lying if I said that we weren't having cold feet about the surgery, but I think we know in our hearts that it's the right next step for her.  We've written extensively on how we got to this point and what eventually led us to this decision, but if you're just reading this blog for the first time and are looking for the short story, well here it is.

 Isabelle was born with several intestinal perforations.  She had surgery within the first couple of weeks of her life that created a situation which required her to be intubated for lengthy periods of time and kept her from feeding orally for quite some time.  Also, she was born at 1 lb 7 oz and her lower esophageal sphincter (LES) had almost no tone, meaning it wasn't keeping the food down that we were feeding her.  We believe that most of this was caused by prematurity and IUGR due to Twin-to-Twin Transfusion Syndrome.

As she healed from the surgery, she was eventually allowed to try to eat by mouth again, but demonstrated some oral aversion and seemed very uncoordinated with her sucking, swallowing, and breathing.  She made some improvements while still in the NICU and eventually came home without oxygen, but with an NG tube.  She really seemed to struggle with her oral feedings, even though we were receiving input from multiple doctors and therapists on how to potentially treat her eating issues.

Eventually, we came to the conclusion that she needed to be back on oxygen because she was, in essence, trying to run a marathon while eating.  She had become so used to it that it didn't bother her, but did affect her eating. 

So, for the last couple of months, she's had both the NG tube and the nasal cannula on her face 24 hours a day. On the positive side, she's been gaining weight, good weight.  On the negative side, we haven't really been able to increase her daily volume in quite some time, she regularly spits her food up beyond what you would be used to seeing, her reflux is still causing her pain, she spends more than half her day upright either sitting in her bouncy chair or the sitting still in the swing.  The latter has resulted in some physical delays that keep her from catching up to her sisters.  Essentially, we feel like it's starting to affect her quality of life.  If she has it her way, she'll be on the move soon and the last thing we want is for her to be tied down by tubes.

The Nissen will be placed near the LES and will let food down, but not let it back up.  We still need a way to feed her when she can't finish her bottle by mouth, as well as the stomach will need a way to vent its gas when the Nissen won't let it come back out.  This is where the G tube comes in.  So, they kind of go hand-in-hand.  Not everyone who gets a G tube needs a Nissen, but logically it makes sense that most who need the Nissen will need a G tube.

I promised the short version, so I'll leave it there.

The surgery isn't supposed to take very long and will be performed by the same surgeon (who we really like) who did her previous bowel surgeries--Dr. Liu.  They told us to expect her to stay in the hospital for three to five days.  Meg will stay for the weekdays and then I'll swap with her on the weekends so she can see the other girls.

I know that as her parents, we'll never forget these experiences and the sometimes heart-wrenching decisions that accompany them.  It's my hope that she grows up not remembering these early painful days and that one day way off in the future, I'll be able to explain to her where her scars came from because she really doesn't remember herself.

Please keep us in your prayers today.  We're not expecting anything to go wrong, but it's another surgery and there's always risk, especially when you go under anesthesia. 

I'll try to write an update post when we know how the surgery went.

What Happened To Your NG Tube?

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.