Monday, 1 April 2013

Little Miss Piggy

Hope was granted her 5th day pass in a row!  Sadie was still with Oma and Opa and I was able to have a special day with just Hope outside of the hospital room.  We stopped at Superstore to pick up a few things and specifically to buy some meat for Hope.  She was a very good girl in her stroller just looking around.  I managed to avoid any germy people from coming near her.  It's a weird feeling to take her to such a public place.  Last time she was home in the summer, this was not allowed as she had not had her Glenn surgery.  Now she's allowed to go out into public, but still needs to avoid sick people touching her directly.  Don't we all need to avoid that really??

Hope fell asleep on the way home from the store and slept for the next 3 hours on and off.  I called the hospital as I started to worry about her being so sleepy.  This morning they had found her magnesium level was extremely low and I knew she'd be receiving an infusion of it in the evening.  I wanted to make sure her sleepiness was not dangerous.  I'm wondering if she was just thankful to have a good nap with no distractions.  I am praying she's not coming down with something.  

While Hope slept, I started to sort through old paperwork and purge our home of things we've stored for years with no reason.  This is a task that cannot be done with a two year old home!  Sadie would have been mixing papers, drawing on important things and running through my piles.  I also cooked up and blended our first meat concoction for Hope.  

I had to drive to the chiropractor this afternoon and managed to arrive on time.  Hope started throwing up in the car and I was panicked, but managed to stay calm and get us there.  I cleaned her up and drove us home for the feast.  I plopped Hope in the high chair and prepared for an epic fail.  I touched the spoon of puree meat to her lips and waited.  Hope looked at me like I was crazy and licked her lips. She wasn't crying so I brought the spoon to her mouth and she opened up immediately!  She loved eating and was a natural.  I suddenly realized that I had no idea how much to give her.  She was asking for more so I continued to offer it.  After the 7th or 8th spoonful she began gagging and proceeded to throw up much more than she'd eaten.  

I called the hospital to report about our feeding experience.  The doctor was thrilled to hear that she'd enjoyed eating so much.  He suggested that going forward I allow her to have two bites and then wait at least an hour before offering it again.  Perhaps this will help her keep it down and we can slowly increase these amounts as she tolerates it.  I realize we have a long way to go, but if Hope will take her calories orally, we have no reason to be in the hospital!!

After her meat snack, Hope played with the newly returned Sadie for a bit and then showed that she was ready for another nap.  I put her to bed about 5:30 and we had to wake her up at 7:30 to take her back to the hospital.  She appears more tired than usual to me, but is also quite content when she's awake.  I'm praying this week will continue with passes to come home and improvement in Hope's eating and feed tolerance.  The doctors are talking about upping her feed concentration tomorrow, please pray this goes well and does not increase her vomiting.  

On Thursday, Hope will turn 1!  This is a day that I doubted would arrive on many occasions.  We know that this journey with Hope has included a great number of people.  We would like to celebrate her first year with the people that have prayed and encouraged us through it.  On Saturday, April 6th from 1-3pm we'll be celebrating and dedicating Hope.  We are currently planning to do that at Centre Street Church, Main Campus, in the Chapel on the second floor.  If you would like to attend, please do so!  Just comment on the blog and let us know you're coming if we don't already know.  If Hope takes a turn in her health and we are not able to bring her out, we'll have the party in the hospital.  I'll update on Friday night with an exact location.  


  1. Dianne Johnson1 April 2013 at 23:42

    Amy this must be such a wonderful and exciting time for yourself , Shawn and Sadie to have Hope home with you now for day 5 on passes. I pray for your family everyday for God to keep working his miracle on Hope along with giving each of you the strength to carry on.. Young Sadie also must be one terrific little girl of 2 as she herself has gone through so much. Such a hard thing to do right from the first time you heard of Hope's condition . You yourself with the love of Shawn , family and friends have been such an inspiration I am sure to many people throughout the world. God does work miracles and looking at it from my point he has lend you Hope to spread his word world wide shown others how faith really does answer prayers. Thank you once again for sharing your life with us and reminding myself how important God is to have in our lifes. Wishing you , Shawn, Sadie and Hope yet another great day. Praying Hope will tolerate her feeds and meats so she will be able to come home permanently into her own room with her family. All the very best to you all. May God continue doing his work as you spread his awesome name and news to all. Hugs to all the family and a great big thank you to God for yet again working his wonderful hands on Hope. Praise Our Lord!!

  2. So happy for you! Hope her birthday bash is blessed and fun for everyone! Continuing to pray...

  3. What wonderful news to read on your blog. So grateful that your family has been able to spend time as a family in your home. Praying that feeds will continue to go well. Small steps that are worthy of celebration. Continuing to pray for your family! God bless!

  4. When I am coming off a long fast, I find that I do crave meat. However, if I have meat that first day after breaking the fast, it definitely bothers my stomach and bowels in a pretty major way. I suspect, hope and will pray that a gradual introduction to solids and particularly meats will be a great success. :)