"Normal"

I'm not sure what everyone knows as of late, so I will try to give a *brief* update of Evangeline's health and issues surrounding this area of her life. Evangeline is having surgery next Friday, a week from today, to get a G-tube placed. This will help her to eat better, and also help her to sleep better at night. It will also help her stomach to stretch, enabling her to take more formula. At the same time they are also doing a Nissen: this is a procedure in which they are tying part of her stomach around the top of her esophagus, to prevent her from vomiting/burping. Enabling her to keep all formula down. She will, however, still have the need to dry heave/retch. Meaning we will have to do what is called "manual burping" where we use a syringe at the g-tube site to burp her and let the gas out. IF she is retching,we can try to get her mind off of it by running her hands under water or other things like that.

We are going into the hospital on Thursday morning, the day before, to have some tests run to see how big her stomach is, and since she needs to fast for that test, we are staying in the hospital and she will be on IV fluids. The Drs suspect she will be in for at least 4-5 days.

After returning home, she will continue to try to nipple first, then, if after 25-30 she doesn't finish her bottle, we will use the G-tube to feed her. We don't want her using all of her energy trying to suck on a bottle that she won't eat. Especially since she has LCHAD, and she needs all the energy from her food that she can get to keep her sugars high.

We are still in the process of getting an extended care nurse. Through all of this, I am a stay at home mom, who really does miss working, however, I do love spending time with Evie. Right now, we could really use help at night, but we have the NG Tube, which is sooo very dangerous. (You can look at previous posts). I learned that we can get an extended care nurse and once we get her in the home, we can choose whatever hours we want, so if I wanted to go back to work, after the G-tube is placed, to feel more like a human, instead of a Zombie-Nurse-Mother-Wife (in that order) we could use her skills to watch Evangeline and to keep her safe and healthy, without worries that she will get sick, like she would at a daycare. Of course, this could just be another pipe dream, and I may be stuck at home until she goes to school. But until then, there is always hope.

I hope you are well informed of all that is going on. All of my energy is going into trying not to worry about this "procedure" that everyone seems to think is a great thing. They think it should be easy for me to watch my baby go in the hospital like that. This will be her 3rd hospital stay in 6 mo. This has been anything but easy. However, as painful as it is for me to watch her go through this, and as little sleep as I am getting now, (and I would continue to do so, if it were in her best interest) I know that this surgery will help her in the long run. And that, is the ONLY reason I have chosen to do this to her. Not for my sleep, not for my sanity, but for her well being. I love her too much to let anything bad happen. And that is why I am dreading this surgery. I know the NG tube. I have done it in my sleep. I've learned it in and out, backwards and forwards, but this G-Tube will be brand new. I can handle that. But watching my little girl have something sticking out of her belly, for an indefinite amount of time, and seeing her with and IV in her arm for 4-5 days, laid in a hospital bed is simply too hard. And then knowing that she will have that Tube sticking out of her belly when we do finally eave, it is just heartbreaking. But, like everything else we have been through, I will adjust. We will adjust. And she, just like everything else that she will have to do, will think that it is "normal".