2013 and Still Alive!

Happy New Year!  We have so much to celebrate as we welcome a new year.  I must admit that there were many days in 2012 that I did not expect Hope to survive.  Starting another year with Hope renews our hope that she will make her first birthday, and hopefully her second too.  I am also reminded of the little ones that did not finish 2012 with the rest of us.  Please continue to pray for Lincoln's family as they miss their little man each day.  Last year was full of constant ups and downs and although it has been extremely difficult, it was also full of blessing.

Hope continues to move forward with her feeds.  She is now taking 10mls an hour into her NJ tube and also took 5mls from a bottle for me today.  It did not happen in one sitting, but it still counts as calories into her body.  Hope is still struggling and throwing up but is keeping it to a minimum and allowing us to continue challenging her.  She is truly a strong little girl that fights for each step we take in the right direction.

We are now in our 5th straight month of hospital stays.  In the beginning I was able to stay in Hope's room for 24 hours straight.  I find myself losing my mind after 6 hours these days.  We are truly maintaining sanity, only because of the support of an army.  I feel guilty leaving Hope, and yet I have to remind myself that allowing others to snuggle with Hope is a blessing for them as well as us.  I also have to continually remind myself that the expectations I feel are ones that I put on myself.  Feeling guilty every time I leave the hospital parking lot is a way that the enemy tears me down.  Please pray that I would be able to hear the truth.

Shawn is out in the mountains today.  Having Liz here visiting has given me an extra set of hands.  It has been a long time since Shawn has been able to get out skiing.  Today is such a gift for him and although I worry about him while he's out back country skiing, I am thrilled that he is doing something he loves. We are learning that in order to take the best care of our children, we need to take care of ourselves as well.

We are still waiting on a date for Hope's trip into the OR to repair the varices once again.  We should hear something tomorrow as the liver specialist returns from holidays and will book her OR time.  I am praying that they find the varices are much better than they are expecting.  They have told us to expect her to go in once a month for six months!  If they find things are looking better, we may be able to limit her trips into the OR.  It's a new year, time for new miracles!