1/25/11

So as of today the committee of cardiologists and cardiac surgeons have met and discussed our baby Riley. They have all agreed that a repair is necessary (I honestly didn't know that point was up for discussion) and we now have a firm date for surgery of Friday February 25, 2011.  Our mission now is to keep Riley as healthy as we can and hope that nothing like a more critical baby bumps her out of the rotation.

Of course I have many questions and I suspect that they won't be answered until the day before at her pre-op meeting.

• What will Riley be hooked up to post-op?  How many machines, tubes, etc?
• How long will she be intubated?
• Will there be any additions or subtractions to her medications?
• Will her feed rate be reduced?
• What can we expect during her hospital recovery time?
• What can we expect for her home recovery time?
• When we will follow up with Dr. Sallee or Dr. Kirshbom?
• How do we care for the incision site?  Can we use vitamin E oil to help reduce the scar?
• What are things we should be on the look out for? (complications, side-effects, etc)

I'm sure that there will be more, in fact Josh came up with the basic of all questions - when we will be able to hold our baby?  Honestly that scares me.  I am afraid that she will be in pain and I don't want to add to that for her.  I want to make things as easy as possible for my precious girl.  I guess that I just want to be as prepared as I can be.  I never, never want to experience what I did after Riley's g-tube surgery.  My heart still goes up to my throat when I think of that day and I can only imagine that open heart surgery will be so much worse

On a bright side, Riley has another swallow study scheduled for Monday February 7th.  I hope & pray that now that her reflux is under control she won't be aspirating like she was when she was first born.  Perhaps we'll be able to have her take some of her feedings by mouth.  That would honestly be such a great thing for her.  Can you imagine how boring it is to "eat" from a tube?  I know she is still so little and doesn't know, but it breaks my heart for her that that she never got to experience all the things that a baby should.  I know that this is more about me than her, but I am sad that I wasn't able to breast-feed my baby.  I am grateful that I was able to  at least be able to give her pumped milk for a few months.  Sadly not nearly as much as I was able to provide for Zoey - I know that I shouldn't compare, but it's really hard not to.  So on to bigger and brighter things.

I am eagerly anticipating Riley's recovery from surgery so that we can move past this stage and see what is next for our very brave little girl.  I know that somehow or another she will make it through with flying colors.