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 This last week has been a little rough for me.  Let's back up to 3 weeks ago, when Ruby had her triple scope.  They recorded her for 24 hours to see how her little insides were doing with reflux.  She's been on Prevacid since birth, really and has had good/bad days.  She's on thickened formula and interestingly enough she doesn't spit up on the Enfamil, but does still on the Similac.  They are supposed to be exactly the same, but obviously are not.  So she didn't spit up at all in those 24 hours, and of course right before we are checked out, have a big spit up.  My thoughts were, "of course she spits up after the recording."  Well, I was too eager to prove something, I guess because Jessica from aerodigestive called last week to tell me that Ruby is actually refluxing all the time.  Silently.  Awful.  My poor little girl.  Who knows how uncomfortable that is?!
So because she basically has acid coming up into her throat all the time, the last two stitch repairs on her laryngeal cleft have not taken because the acid was probably eating away the sutures.  Sad!  Sad that we tried and tried and put her through the surgery and it was inevitably going to fail.  So now we need to get the acid under control so we can schedule another stitch repair...which means 24 hour feeds (G-tube), 24 hour feeds (GJ-tube) or a Nissen. None of those I want.  I hate 24 hour feeds for her and for me.  and I don't want her to go into surgery again to get a nissen!  Dr. Page said it will be for a few months, we can be really aggressive, so we can get her stitch fixed.  That is doable.  It'll be hard, but doable.   Of course I would rather be aggressive than be stagnant for who knows how long.  I am so ready to move on and get her eating by mouth!  I wish it were going to be as easy as just giving her a bottle, like at birth.  I know the feeding process will be a bit of a process also because she gets nothing by mouth.  Her tummy fills and she's good.  She is continually losing the desire to eat by mouth the longer we wait.

 

We also had an eye appt. that week of her scope and her pressure is low, which means the shunt is doing it's job, but her eye is super cloudy.  I have been able to tell there was something wrong for a bit of time and I asked the Dr. about it.  He didn't really give me an answer and led me to his assistant to make an appt. to look at it under anesthesia.  I was a little shocked and felt like he wasn't explaining things well to me, giving me any feedback.  His assistant seemed just as shocked and then played it off as routine.  I was a bit worried since that appt.  We got in two weeks later and found out that her cornea is, in fact,  cloudy.  He said he couldn't see through it, which probably means she can't see out of it.  He said there really isn't much he can do about that and we may need to see a cornea specialist and eventually do a cornea transplant.  In kids they want to wait as long as possible to do them because the chance of acceptance is slim. Ummmmmm.  Shock. I never even thought about her losing her eyesight permanently.  Holy reality check.  I have been bawling on and off since hearing this news.  I have asked questions on the FB pages I am on and haven't gotten positive news with those that have gone through this. I have researched it and they can do a plastic (K-pro), and there is a Dr. in New York that specializes in this in young kids.  I have heard that the risk of infection is higher in the plastic transplant.  So in a cadaver transplant, it's slim that the body will accept the new cornea (In adults it's a 95% acceptance rate.  Kids is 50%).  There aren't any more options.  It kills me that there aren't any more options.  MAKE ANOTHER OPTION!  SHE CAN NOT LOSE HER EYESIGHT!

 

Then I read this: 2 Nephi: 34-35.  The Lord knew what I needed.  He needs me to trust in Him.  I do, but our timing is very different, and that's the hard part.  But He needs me to completely trust Him.

I love my little Ruby girl.  There isn't anything I wouldn't do for her.  I can't imagine life without her snuggles and smiles. She is getting so much stronger and hasn't been sick for over a month now!  That is huge!  I can't believe the progress she's made  in this last month of being well.  We are working on her sitting up, and while she can't do it unassisted, she is content for more than 2 sec.  She's getting there and what a blessing it is to me to be able to be a part of it and to watch her accomplish all that she has accomplished.  She's my miracle baby.