Ruby Valentine

The last two weeks were rough.  First, because we got home from the hospital on June 30 from Ruby's second surgery.  I don't know that I expected her to be as uncomfortable as she was the week after surgery.  The first surgery in the NICU wasn't nearly as bad, but I am assuming it's because pain is monitored more closely there and she had stronger medication.  She got a fever the first two days coming home and then was coughing so much that it would make her cry, night and day.  Last week we then had her follow-up swallow study to see how this surgery took.  Dr. Page wanted it sooner than later because of how the cleft fell apart the first time.  I was so nervous...because what was the solution if she couldn't drink this time?  We can't keep sending her to the OR to get stiched up, then keep having a swallow study.  I knew it was something I didn't want: a Gastrostomy Tube (tube surgically placed her side that will go straight to her stomach to deliver nutrition) :( It's not a fun decision, but we really think she needs to be able to heal in her throat and having a tube that is rubbing along the suture and causing swelling isn't helping her at all.
This time in her swallow study they started with the thickness of honey and then moved to double honey, which still moved into her lungs.  They aren't certain about how it's getting in there, but after the follow up with Dr. Page, he needs to see her again in the OR to check things out.  We have an upper GI test this next Wednesday to figure out if there are any problems other than the laryngeal cleft, then we'll see a GI specialist to discuss the details of the G tube.
Dr. Page is also thinking he wants to drain her ears and put tubes in.  It will be nice to know that that will be taken care of and we don't have to wonder so much about hearing (hopefully). He said he normally wouldn't worry about it so much, but because of her cataracts, he wants to get it taken care of so she doesn't fall behind developmentally.

We also had an eye appt. the day after her swallow, to check on her cataracts.  He said her left eye is worse than the right (which I could tell), and that she needs to get surgery right away, otherwise the brain starts to shut off working so hard to see clearly and more permanent damage is done.  Her 1st eye surgery is this next Thursday the 25th. They do one eye at a time about a week apart to make sure everything goes ok and she doesn't develop any infection.  We haven't met with the ophthalmologist to discuss details yet, but I am really nervous for this surgery.  It kills me that she is having to go through all of this.  I think when her first surgery in the NICU came, I was a bit relieved in the fact that I thought it would all be over and we could go home afterwards.  Now that I have her home and she is growing and getting so big and as I get to know her more and her likes and dislikes, it breaks my heart knowing she has to go through so many more surgeries and follow with hard weeks like that last one home from surgery; knowing she is going to be uncomfortable for days and I can't take it away, is the hardest part of being a mom.  She's my beautiful baby, and you look at her and don't know anything is wrong, and then I think about her insides and how I wish with all my heart I could fix things so she wouldn't have to go through any of this.  This road to recovery is harder than I ever could have imagined.