G-tube Surgery Details

So, Amirah has to have another surgery. We were really hoping she wouldn't need to have this one. However, after discussing it with all the doctors we have agreed to it.

Basically, the main reason for Amirah to have this is because she has Chronic Lung Disease and severe reflux (she refluxes all the way up to her trach) and she is in a lot of danger of aspirating. This can be be EXTREMELY dangerous for her and can even cause permanent scaring to her lungs.

Another thing with the g-tube is that Amirah gets bigger she requires more and more food. The NG Tube (her feeding tube she has had since birth) becomes to small for her.

And finally, with the placement of the g-tube they will be able to stop the NG - Tube that Amirah clearly hates. She is getting better and better at figuring out how to pull it out. Two nights ago she pulled it out 3 times. And while its relatively easy to put it back in she doesn't like to cooperate. They NG Tube doesn't "hurt" her but is extremely irritating. With the removal of the NG tube she will no longer have to have things taped to her beautiful face :)

In addition to putting in the g-tube the will be doing a nissen fundoplication to help with her reflux. What they will do is take the upper part of her stomach and wrap it around the lower end of her esophagus. This will help to tighten up the the opening at the top of the stomach and help the stomach contents from refluxing back up the esophagus.

While the g-tube will be removed at some point, the fundoplication doesn't get reversed. As she grows her stomach will also grow and there shouldn't be an problems with it. Also, Amirah will still be able to learn to eat via her mouth as she gets bigger which was a worry of mine when I first heard she might need this surgery.

We don't know what time the surgery is scheduled for yet, but should have that time later today. From what I was told yesterday the surgery should take about 3 hours or so. The surgeon that will be doing her surgery is the the same one that did her hernia surgery.
Like I said before, Andy and I aren't thrilled with the idea of another surgery, but we are really working on remaining positive and supporting Amirah in her what ever she needs to get bigger and get her home.

I could write about how nervous or upset we both have been, or how unfair it all seems. But at the moment I don't feel that way. Truth is I still feel blessed. I feel like the "I like girl" that is all over the internet ( http://www.youtube.com/watch?v=qR3rK0kZFkg&feature=player_embedded ) I could list all the things that we are blessed with, but don't want to bore everyone.

Andy and I are just starting a new book recommended to us by our therapist. It is called The Biology of Belief ( http://www.brucelipton.com/biology-of-belief-overview ). I have only skimmed it at this point but I am loving the ideas that are presented in it. I will probably write about it or its affect it has on me as I read it.

I guess I don't really have much else to write at this point.

Here are a few photo's of Amirah from the past few days.




This is a vision board we created for Amirah. It has drawing of healthy lung ways, drawings of unhealthily lungs crossed out, and positive affirmations about her lungs. We are really working on having Amirah surround by positivity. This includes trying not to discuss some of health challenges around her, and really practicing inner calm when near her. Not only do I think it helps her, but it really helps me to stay present and positive and to enjoy my visits with her. I plan on creating different vision boards for her and changing the affirmations has different needs are presented to us.

As always, thank you for all the continued love, support and prayers through all of this. We really couldn't do it without everyone.

Love is always.