Wednesday, 19 December 2012

Edmonton the Impossible

Today was not a good day for many reasons.  Hope's transfer was cancelled as Edmonton is swamped with kids right now.  Calgary is also full to the brim and has kids in the ER just waiting for rooms to clear so they can come up to the ward.  I guess this Christmas will be different for a lot of families.

In the afternoon the cardiologist came to tell me that Hope's cath has been booked for December 27th and she'll be transferred on the 26th.  I was extremely frustrated and angry to be honest.  I'm so sick of the constant ups and downs with this journey.  I spent so many hours prepping my family for a departure to Edmonton today!  Now I have to do it all over again next week.  Christmas was the perfect time for this to happen as it allowed Shawn to be there for the procedure with me.  He could bring Sadie up and we'd have a whole week as a family.  Shawn is returning to work on the 27th and once again, I would not have him with me.

When I'm really angry I find it hard to express myself without crying.  Today the tears fell and the cardiologist heard my frustration.  She then spoke to our primary cardiologist and he called the doctors in Edmonton on our behalf.  They have agreed to try and take Hope as an emergency case on December 24th and transfer her on December 23rd.  This is ironically good timing for us.  We have to be in the hospital either way, and this way we can be together as a family and Sadie can have Christmas at the Ronald McDonald House.  We are supposed to find out on Friday if they can take Hope on the 24th, as the transfer would need to be scheduled at that time.  Please join us in praying that they will not delay this any longer.  The doctors agree that this procedure, although risky, could greatly improve Hope's current condition and get us closer to figuring out what's going on with her little body.

I'm tired of fighting, I have my guard up at all times in the hospital because there are constantly things happening that are not in Hope's best interest.  Today the doctors agreed not to put Hope back on the formula that she has not tolerated the last 3 times it was attempted.  Then, in the afternoon the nurse brought in Hope's feed, that same bad formula they'd agreed not to give her.  Apparently the pediatrician had misunderstood the cardiologist when they'd spoken about what kind of feed to put Hope on.

Hope is now back on TPN and only taking in 5mls of feed.  We are starting at the beginning and have a long way to go before they'll ever consider sending her home.  I used to think that being home by New Years wasn't soon enough.  Now I just hope to make it home with Hope before her first birthday in April.

Thank you for continuing to pray for us as we journey with Hope.  We're getting very tired and know that our strength comes from the Lord and from so many lifting us up in prayer.

Here are some recent photos taken by


  1. Your family is lovely. Hugs and prayers are always with you...

  2. Praying for you as Hope's advocate, to know what to do, to say what you need to say, and to be her mommy!
    All these things are so hard, and only the Lord can and will get you through. May the God of the Universe do what HE needs to do, with your little Hope, your family, and your hospital professionals. I pray that there is no more mistakes made, that the Dr's do what is best for Hope, and that you will be given Peace as you live through these days!
    God sure does love you, and is very proud of you, for Trusting Him through this very difficult season of life!
    Beautiful pics!!! thanks for sharing them!

  3. I've been following your blog for awhile now. My baby girl is the same age as your Hope (born last April). I realize how much we take our good health for granted, how I've been able to enjoy these precious 8 months with my girl in my arms at home. It saddens me to realize how I can get frustrated with such trivial things when I have soooo very much to be thankful for. Thank you for sharing your story, for being so transparent. I have prayed many times for you, your baby girl, and your family. I pray that no matter where you ending up spending your Christmas this year, that God will show Himself so wonderfully to you and your family, that you will feel His constant presence, give you joy in the midst of this trying journey, and that God would see fit to grant you your miracle healing for this precious little one. What a comfort it is to know that our God loves our children even more than we do!! Praying for you tonight.

  4. Hoping with every fibre of my being for a Christmas miracle! I was listening to "Grown Up Christmas Wish" yesterday and there is a line of hoping for time to heal our hearts and I felt that song was for you.. Your photos are lovely...your girls are beautiful.. and you deserve a happy and healthy turn.. I am praying the procedure goes well and you get some answers... some helpful ones and that it all clicks and then it's just a solid path of getting better... Tammy

  5. What a beautiful family! Thank you for keeping us updated..we continue to pray for guidance for the doctor's, for courage for you and Shawn and a miracle for Hope!! We are all there with you! Lord please bless and carry them all and bring them safely through to a miracle...we ask this in your name. Amen.

  6. What a beautiful family! My family and I will be thinking of you and praying for your family over the holidays.

  7. Praying for you all! For answers & that Hope can have her surgery on the 24th allowing Shaun to be with you & your family to enjoy the RMH for Christmas! Praying for strength & peace for you as you stand up for your daughter and for much support during this time. Praying for Hope's body to heal & that you will indeed be home for her 1st birthday party! Amy, as I look at these incredible pictures, I see Hope & I see such strength in her little body! She feels your strength & your faith as you stand with her & defend for her and as you trust in God. Many prayers & thoughts for you & your sweet family! I will continue to lift you up whenever you come to mind (which is often) over this season! Hugs. ~Norway.

  8. Isaiah 40:28-29

    ".... The Lord is the everlasting God.... He gives strength to the weary"

    May you find strength in Him today! Praying for your family always

  9. Oh Amy, I am so sorry you are having to travel this long and tiring journey. My tears are falling for you this morning and my heart is aching for you. Please Jesus, have mercy on this family and hear their desperate prayers for their sweet Hope...

  10. Dear Amy: My heart hurts so much for you and Shawn during this difficult -- and for your dear little Hope. I saw your photos on your FB -- such wonderful pictures of your girls and you and Shawn. As I pray for you and your family I have been praying
    Psalm 130:1,2 "Out of the depths have I cried unto thee, O LORD. Lord, hear my voice; let thine ears be attentive to the voice of my supplications." May God give you strength and courage for each day!

  11. What about breastmilk for her feeds? Using a donor for it?

    1. We've talked to the staff about it but it's not an option for Hope. There are a lot of reasons but mostly the fact that it simply is not calorie rich enough. We still have to add large amounts of formula to it to make Hope gain weight. We have done this all along. So regardless of what we start with, Hope still has to tolerate breast milk.

  12. I also am wondering about donor breast milk!!! I am a donor mother, who donates to the Calgary Mothers Milk Bank. Is that a possibility for her feeds??