Tuesday, 1 January 2013

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!


  1. Lovely to read encouraging news:-) May this year be full of miracles. 'The Lord, He is the One who goes before you. He will be with you. He will not leave you nor forsake you.' deut. 31:8

  2. Rejoicing with you that Hope is giving you hope in 2013 and that she is fighting! I will pray for you as you fight the enemy & his lies! You are a blessing to so many as you share your journey of faith! - Norway.

  3. Continuing to pray for you. I have been challenged to pray more and expect more from God in 2013. Your family is on my list and my heart. May you continue to see the blessing and the beauty a midst your brokenness and in that remember that you are God's beloveds. Romans 8:14-16

  4. This is such a beautiful post Amy. We continue to pray for each of you. Lyndsay

  5. Praying for you. Our God is a God of miracles! Thanks for this post.