Wednesday, February 20, 2013

Most days...

Most days I stay so busy with work, Zoie, house chores, taking care of Raygen with meds, food and the normal baby things that I'm able not to feel scared, till bed time.  Something about getting Raygen ready for bed that my fears set in.  I love giving her a bath and watching her play and laugh and I just realize my daughter is sick.  She is fighting a cold now for the last few weeks.  Little bugs last way longer for her then they do you and I and it's always so scary.  You never know when you could end up back in the hospital.  Knock on wood.  But the bigger fears also set in.  The fear of another heart surgery, the fear of more test and pokes and the major big scary fears that we don't speak of.  I'm getting ready to schedule her MRI and I think that's why I'm in a sad mood.  I know she will have to be sedated, again, and I know it will be a hard day for her.  We have also decided to do and MRI of her heart at the same time so we can get a good look at her glenn procedure and hopefully her stent.  I know each day I am so blessed to have my daughter, both my daughters that I try not to think further ahead then today, but sometimes the fear just makes me want to scream.  I am an organized freak and I like to have things done my way and I will work my  butt off to make it all happen, but this is something I have no control over.  I have no control over my daughter's heart and I think that's what scares me the most.  Fear of the unknown.  Fear of tomorrow of today of the next few hours.  I don't allow myself to pity my daughter or our family because we are so blessed and lucky in so many ways, but I do allow myself moments to reflect and I look to God to help pull me through my sadness and pray that he helps me deal with my fear.  I know I have no control, but I know he has ALL the control.

So today we went to the GI Doc and tomorrow to Seattle for Raygen's PT evaluation and then I guess I have no reason not to schedule her MRI.  We finally heard back from the blood doctor today and she did say Raygen could have blood draws and iv's on her right side just no pic or central lines.  This is good news (never good that she has to be poked) because she hasn't been able to have pokes on her right side since before the Norwood so hopefully she has a few good veins on that side and the next time she needs an iv or blood draw maybe they could do it with 1 poke not 12.  Today Raygen weighted in at 23lbs 13.3oz and is 2' 7.3inches long.  They upped her calories so hopefully she will start gaining weight and not loosing.  This is also a concern for me.  Weight loss is never a good sign so hopefully higher calories with her increased activity will work and she will gain.

I will update tomorrow when we get home to tell you all what PT says.  I am thinking they will want to brace her right hand so she will have to start keeping it open instead of always in a fist, but I really have no idea.

Thank you all for all your prayers and support.  They are always so needed and very much appreciated.