Sunday, 31 March 2013

Happy Easter

Today we celebrate that Jesus rose from the dead.  I was especially touched today as I thought about the fact that Jesus' death allows us to be forgiven and spend eternity with Christ.  Eternity with Christ is a wonderful thing, obviously, but eternity with a whole hearted Hope is also worth celebrating.  I started to tear up in church as I thought about Hope having eternity with a healthy body and tried to remind myself once again that life on earth is brief in comparison.  I asked God to give me the strength, patience and trust I need to continue on this difficult journey.

This morning I got to the hospital and the nurses had everything ready for Hope to go.  We had asked last night if they would have things in place so we could surprise Oma and Opa at church with both the girls.  Shawn was at home dressing Sadie after her big egg hunt and I was getting Hope ready in her hospital room.  I got home, picked them up and we headed over to church.  We were both amazed that it had worked and we'd pulled it off.  

Hope was less content today and didn't last very long before she needed to go out to the nursery for a nap.  She looked adorable in her Easter outfit and I find myself very excited to dress Hope in "normal" clothes.  It was wonderful to introduce her to so many people that had only ever seen her in pictures.

After church we went up to Oma and Opa's house for the day.  Hope had a few naps and did fairly well.  She threw up larger volumes today but less frequently.  Overall I feel that it's getting a bit better, although she is still not able to tolerate her soother as her gag reflex is too strong.  As a result, I didn't try putting a spoon into her mouth today.  It wasn't worth it as I was positive she was only going to vomit.  Her diaper rash is back once again, she pooped 14 times today so it's impossible to stay on top of.  We really need her diarrhea under control so it doesn't cause dehydration on top of our other issues.

I'm interested to see what the doctors will say after Hope has spent 4 days out in the 'real' world this week.  I'm wondering if they will attempt to concentrate her feeds or continue to push for food.  They aren't sure if the feed is causing her to retch or if the medications are doing it.  I hope it's the medication and one that we can live without!  It's getting difficult to know that Hope is so close, yet so far away still from coming home.  I'm continuing to pray for a miracle.

Last year on Easter, Hope was a newborn in the NICU.  She was doing well at the time and was stronger than we had realized.  It was during this time last year that her body formed the clot to her liver.  We never knew it had happened, nor would we have understood the complications that would arise from it.  To look back at everything that happened is almost overwhelming.

Sadie stayed with her grandparents tonight and Shawn and I went back to the hospital with Hope.  We got her settled, checked by the nurse and ready for bed.  Once she was in a deep sleep we snuck home to get things unpacked and ready to start a new week.  Our new home care nurse has her first shift tonight with Hope at the hospital.  I'm praying that soon enough she'll be coming into our home to watch Hope.

Today is set aside for us to celebrate Jesus' sacrifice on the cross and the hope we have in his resurrection.  I always thought that was wonderful, but am more thankful now in life, that this world is not our home.  To watch Hope suffer and think that after her death she'll merely fade into the ground feels meaningless.  I find comfort in the fact that this life is but a minute in comparison to eternity in heaven.  Some days that truth is the only strength I have.


  1. Amy, I hope you know what an inspiration you are. I can hardly type through my tears. You are the epitome of trust. And it's absolutely beautiful. God bless you, Shawn, Sadie, and Hope. I will continue to pray for that miracle. You just keep on doing what you're doing. Because you're amazing. Happy Easter!

  2. Fellow CHD Mom1 April 2013 at 08:46

    Does Hope do better with pedialyte??? My daughter (also a CHD baby with complications) would throw up her whole feed after you finished feeding her...and the only way that she would keep the feed down was if you added 10mL of Pedialyte, take that away and she would start vomiting again. She is still on a tube feed now...but she is able to have the Pedialyte gone from her feeds after a fundoplication.

  3. Amy, we are continually praying with you for Hope's miracle. God is good all the time.

  4. Your perspective is amazing. Know that we continue praying for Hope and for all of you... for miracles and great surprises. For new revelation that will stabilize her feeds and help her keep food down. And each day, for God to heal her body. I'm keeping my hopes up for you.

  5. The strength of you and your family is very inspirational and humbling. Is Hope on a Probiotic? My kids take them daily especially if they have bowel issues or have been on an antibiotic. Also the best diaper rash cream is Lush ultrabalm... it starts to heal their little bums within hours. It is a staple in my house and can be used on everything and anywhere. My prayers are for Hope and her recovery.