Sunday, October 20, 2013

6 month update!

It's been one month since Ruby has had her G-tube put in. I can't even begin to explain how great this has been, especially now that we are back to 1 hour feeds. I didn't do the nissen...and am so happy with that decision.  I was SO, SO leery of having the g-tube done anyway.  It was really hard for me to approve having a hole cut in my baby's tummy. It's like having my baby's ears pierced. I just have a hard time CHOOSING to have something like that done. I know it's different, and there isnt anything wring with earrings, but when they are so little its hard for me to justify. Babies are so perfect straight from Heaven, and this was the first elective surgery she's had. But, like I said before, It's so great. Her little face is free and clear of tubes and tape and I can kiss it all I want!
She is becoming so much more active, compared to sleeping all the time. Her head control is getting better, she doesn't like tummy time because she has low upper tone, so she will keep her elbows up under chest for a minute, but doesn't like it, so she either rolls over on to her back or lays her head down to the side and puts her arms down to her sides. We are working with a physical therapist to get her stronger so she can play with toys. She found her hands and LOVES them! They are still opening up (she likes to clench them a lot) but she watches them ( one of my favorite firsts) and chews on them like crazy! The fact that she has two teeth helps too!

 We saw her eye dr. last week to see if the pressure in her left eye (glaucoma) has gone down and it hasn't. Boo. I am religious about the drops in that eye, but they haven't helped. It looks like she will have to get surgery to put a shunt in in the next couple of weeks. I am a bit emotional about this. It sounds easy and the dr. Makes it seem like it's not a big deal, but it's not always a "put a shunt in and you are good" thing. As I have learned with my Ruby, there can be complications to everything. They dr. explained that thee can be only 3 shunts put in per eye. Ever. So basically it's buying time. The shunt drains the fluid, much like a tube in an ear, except that the tube in an ear drains it out if the body. A shunt in the eye, drains it to another part of the eye. It can then form scar tissue causing the shunt to be less effective.  It could be 5-6 years, 13 years, or it could not work for her at all. Encouraging, eh?  I didn't think so either. But we don't really have a choice if we want her to develop better sight in that eye. If we don't do anything obviously her eyesight will eventually deteriorate.  The hope is that it all goes well and it drains the pressure and sustains itself for many, many years and there will never be another issue. MY hope is that I pray hard enough that the pressure miraculously goes away before surgery and they find that it doesn't have to be done.  I think my way is way more realistic :)