Step 5

We now have a feeding tube. Which I learned how to put in and administer food through. Oh how under qualified I am to do this! I do not feel comfortable putting a tube down my daughter's nose into her stomach.

I have yet to actually place it myself. I just learned the way to measure and then stick it down, followed by how to put formula in it by watching. It's just a matter of time until she learns how to rip that thing out and then I have to step up to the plate. Tate and Trey got very good at taking those out. No matter how much we taped them down, those tiny fingers would always find a way to slip under the tube. However, the wonderful nurses that took care of them replaced them. This is all new.

Emma will eat as much as she can. Once she can't take anymore I then feed her the difference through the NG tube. If we get to a point that she cannot take any formula in on her own they will operate.

Emma hates the NG tube. When she first tried eating she would have a horrible look on her face every time she swallowed. It is causing her to gag. A lot. Which makes my heart race. A lot. I think I'm figuring out ways to lessen her gagging. What a learning experience this is.

If she tolerates her feedings well for the next 24 hours with the tube in place it looks like we are going home. Her breathing is in an area we can tolerate. Her medications seem to be balancing things OK. Now she needs to gain weight. They are also setting us up with Home Health & Hospice. They will come and help if we can't get the tube in on our own. They will also make sure we have all the medical equipment we need.

We have steadily marched through all the steps to prevent surgery. #5 is a place I hoped to never see. As long as we can keep her gaining weight we can get closer to the six month mark they so desperately want to hit.

Today I've decided I'm not going to think about 5 months from now. It's too overwhelming. My new goal is to make it to the 26th. One week. Everyday will be triumphant if we survive once we get home.  I was scared to go home with oxygen and a heart monitor. I can use those with ease now. I am hoping the same will happen with this.

Having a feeding tube will be so much easier in many ways. She won't be connected to the wall. She can move as she pleases, or as I please.

This picture was taken a couple minutes after the tube was put in. Her expression encompasses the situation well I think. She keeps looking at me wide eyed trying to figure out what it is we are doing to her now.

Emma had another x-ray this morning. It showed no change. Her doctors are satisfied with how she is breathing now. Things might not change until the hole is closed. Emma creates her own normal. Her blood work came back looking much better than before. She is taking her new medication well. She also had an echocardiogram. I hate how I sit in the room with the tech that I know can tell me if things are better or worse, but they aren't allowed to tell you. I haven't heard back from her cardiologist yet on what he saw. I'm not expecting much to change. I'm always hoping it will, but realistically I'm just hoping she isn't getting worse.