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.