Ruby Valentine

After we got home things were good. and hard.  Ruby sleeps A LOT...but when she's awake she is a little fussy and uncomfortable.  And I am pumping.  And I have 3 other kids at home 6,5, and 2...and they need to leave the house sometimes, and Ruby can't.  Dr. Allare stressed to me that my lifestyle is going to change.  Ruby won't be going to the library, or the mall or the science center, or the grocery store or to church.  They said for 6 months...and then changed it to a year with RSV season coming after that 6 months.   Thank goodness for family...and thank goodness my kids just love having Ruby home.  My mom and mother-in-law have been a HUGE help.  They switch off every other day coming and helping me with my kids and the house and my sanity.  I also have the best friends that are willing to take my kids to play and to swim.

I think since we have been home I have had almost all of our appts. that were set up in the hospital and then some.  We have been to all of our follow ups and had initial therapy visits in our house.  It's all a bit overwhelming and sometimes drives me insane that the only places I feel like I go are to Dr. appts.  I kind of thought we'd get home and go to these follow up appts. and that would really be the end of it.  Then we'd occasionally see them again for future follow ups...I was wrong.  It seems like there is always something coming up and always something that changes or needs to be looked at again...

Ruby had her 1st swallow test since surgery scheduled on June 19th.  We thought for sure this was our ticket.  She'd show us how great the surgery healed and we'd get to feed her and wean off of the feeding tube.  We were so hopeful, and she failed. They started with the thickness of honey and were going to work their way down, but she didn't even make it past that one.  Back to square one.  That was a rough day.  I felt like we had come so far in 6 weeks....and then it all changed in a matter of minutes.

Dr. Page called and wanted to get her in the next week to look at the suture.  He took her in on June 28th.  We knew we'd be staying overnight because they had to put her under anesthesia again.  That always makes me nervous...but we needed to see what was going on.  We waited in the waiting room for what seemed like too long.  This was longer than the last surgery.  He finally came out a told us that it was as if he had never done the first surgery and they had a hard time getting her to breathe on her own under the anesthesia.  The picture he showed us of her cleft looked exactly like the "before" picture of the 1st surgery.  WHAT?!  He was as confused as we were.  Something obviously went wrong and everything came undone.  He stitched it back up and is hoping for better luck this time. 

We ended up staying two nights in the hospital because Ruby was on oxygen and her levels were not as high as they wanted them.  She was really uncomfortable and had a terrible cough all night after surgery...and pretty much the next week after we got home.