Shunt surgery follow up

In less than 2 weeks my baby will be 9 months old!?! Where has the time gone? About 8 weeks ago was her shunt surgery on her left eye with glaucoma. It was explained that the shunt is put into the back of the eye and stitched closed with dissolvable stitches. Over the course of 6 weeks the stitches will dissolve and the pressure will gradually go down. If it's not regulated with stitches, her pressure will go from high pressure to no pressure and that's not good either. Before we went into surgery her eye had been pretty constantly in the high 20's. They want it between 6-11. Now after follow ups every 2 weeks, it's at a 3. The Dr. wasn't super worried about this pressure but said if it's still low after this next appt. he will want us to get an ultrasound of the back if the eye. He wants to make sure the shape is normal (not shallow). If that's the case she just may live with lower pressure and be fine. If the shape is off, her vision will be distorted. I don't know yet what that would bring.

It's really amazing to me after eye surgeries how well Ruby can see now. She has a droopy lid on that side that was really opening up more before surgery and now she hardly ever opens it. He said it will take a good 3 months before she may really try because she still may be able to feel the shunt in her eye. How annoying is that for her. Poor thing...I hate when I can feel something in my eye and she just has to get used to it. He didn't give us a prognosis on glasses yet. Once the pressure stabilizes we'll take the next step.

(Before surgery) 

(About 6 weeks post surgery)

Of course right after surgery, she picked something up and was sick for 1.5 weeks. Her getting sick is so hard. She's on o2 and it really takes it all out of her. 

She sleeps a lot when she's sick (which doesn't mean that I get more sleep) and we really have to keep up on suctioning out her congestion and keeping her breathing treatments every 4 hours. She also has to go to 24 hour feeds so that her stomach doesn't expand like with bolus feeds, otherwise she spits up so much there is a worry she could catch pneumonia or have a collapsed lung because of aspiration. We have avoided that so far!  We've gotten sick about once a month since winter started in November. We have gotten to stay out of the hospital, thank heavens, and I am hoping that will all slow down the older she gets and as the season moves to spring. 

As hard as this last year was and I was so eager to say goodbye, I wouldn't take it back for anything. This little love has blessed our home and family so much. We have seen SO many blessings/tender mercies in our lives and I know we will continue seeing them.  It is amazing to watch the innocent faith if our children as they specifically bless Ruby in every prayer we say. We have grown closer to our Heavenly Father through all of this and know that He is in charge no matter what. He knows Ruby and he knows us. I am thankful to know that He loves us individually and that he blesses us individually. I am also thankful that we have had so many opportunities for Ruby and that we live in the time we do where there are many modern miracles. 

She has a scope coming up in the end of January with her GI dr., ENT and pulmonologist. They will put her under and scope from her throat down to her legs to tell us our next steps. I am nervous/excited to move on from where we are at the moment. Nervous for more unknown, excited to get her closer to eating by mouth. I pray this year will bring good things and a little less adventure ;).