Stress is an understatement...

Tomorrow is decision day on what our next step will be with Kayla. I'm so nervous and worried that I'm making the wrong decision...but I'm not sure what else to do. I wish this was all black and white and the Dr's would just tell me what the solution is...but they are basically giving me two choices right now.

First, they have decided to hold off on the Nissen Fundoplication as there is still a chance that Kayla could "grow out" of her reflux issues. Since the "fundo" is an irreversable procedure that can have lasting complications (such as never being able to throw up or burp), it is really a last resort surgery that we'd rather not do if we don't have to. I'm very relieved that they took this surgery off the table for now.

Second, we need to start getting Kayla growing. Ideally we would continue feeding her with a bottle, but she's in so much pain from the damage to her esophagus that she is developing a feeding intolerance to the bottle. So my two choices are to either go forward with a gastric tube (GJ) surgery or an NJ tube down her nose. The less intrusive surgery would be the NJ tube down the throat...however, Kayla has become an expert at ripping these tubes out. I'm pretty sure she would have it out within 24 hours if we went this route. That would leave us to have to reinsert the tube every time which is NOT a pleasant experience for Kayla or us. She screams the whole time it's put in and when she does have the tube in, she gets very congested and agitated. So basically, this is not a pleasant option but is the easiest.

Of course, the alternative is a surgery where they put a tube into her belly for us to feed her with while her esophagus heals...the goal would be to let her throat heal and give her body time to grow out of the reflux. If the reflux continues, then we would have to look at the Nissen surgery again. If the reflux resolved, than they would go back and remove the GJ tube. In the meantime, we would continue trying to feed her by bottle so she didn't develop an oral aversion and use the tube only when necessary. From talking to other g-tube moms, they said that this tube is really not that bad and the babies don't even pay attention to it. So from a comfort standpoint, I'm leaning towards the surgery. Oh and they would do the surgery at Texas Children's Hospital.

Her pediatrician and I are going to discuss this in the morning and make the final decision, but I'm pretty much leaning towards the surgery. There is an option to do the NJ tube and then go to the GJ tube if it doesn't work...but I really think it's just delaying the inevitable and the longer we continue putting it off, the longer we are hurting Kayla.

Please say some prayers that we will do the right thing for my baby girl. It's such a hard decision for me...and I'm a Libra...I don't make big decisions very quickly, I want to weigh everything...and I just don't have the luxury of time right now.