Tuesday, 16 April 2013

Fatty Fruit

The Cardiac Conference took place this afternoon and went as we expected it would.  Dr. Ross and the rest of the team in Edmonton agreed with the team in Calgary.  They all feel that a transplant is Hope's best option and if she is able to receive one, would do very well with a new heart.  Tomorrow morning is the Transplant Conference with Edmonton and Calgary.  This is not something that parents are able to attend.  It begins at 7:30am our time and will run for 1-2 hours.  After it is over, our cardiologist will be coming down to PICU to share the results with me.  Please pray for this meeting and that they would all agree that Hope needs a new heart!

We were warned today that we may need to go back up to Edmonton for some further liver testing before Hope is able to be listed.  That would happen very soon and adds a lot of stress as we take possession of our new home in 2 weeks.  Obviously that is so minor in comparison to what is happening with Hope, but I have tried to speed up my packing process and pray I don't leave a lot of work for someone else to finish when we go to Edmonton.  Obviously things change all the time and there is still a small chance that the testing could be done here in Calgary.

Hope has done fairly well with the transition to the new heart medication.  She did not really sleep at all today though, hopefully this wears off and she can get proper sleep again.  She went from never being awake to never sleeping, we need something in the middle!  Tomorrow she will begin taking the viagra and we hope it gives her some ease with her breathing.  The new medication is not compatible with a lot of the meds Hope is on and they had to change so many things.  One of the most major changes was to her diuretics.  If she becomes fluid overloaded, we'll be forced to take her off this new medication and go back to Epinephrine.

Hope was given the wrong dose of medication yesterday as she actually received another patients medication!  Obviously the doctors were not very happy and the hospital is involved to make sure this never happens again.  There have been a few errors lately that are concerning.  We know that we are working with humans and that everyone makes mistakes and we do not hold it against someone personally, we just pray that God protects Hope from anything truly dangerous to her health.

We are stressed this week as we await answers, change and unknowns.  I find the days at the hospital long as I feel like I'm waiting the entire time.  Today Hope was not very happy in my arms so I spent most of the day staring at her and trying to keep myself busy.  I assumed and have now confirmed that through this stressful time I have gained some weight and am never happy about that.  I know that it does not truly matter and is something so minor, but it is really frustrating to feel uncomfortable in your clothes.  I was already struggling to get back into my pre-pregnancy clothes and have found that difficult or impossible.  To find out I have put on some of the weight I worked hard to remove is kind of depressing.  At the same time, I do not have the energy to exercise or the mental health to choose a salad over a comforting grilled cheese.  I am praying that God changes the way things work and that carbs and sugar become good for you and fruits and veggies start making people fat!  It may be a dream but I hope for a lot of things that the world says are not possible!


  1. I actually busted out loud at the last part...I'm with you...DOWN WITH FRUITS AND VEGGIES!!! However, having recently lost 75lbs a simple suggestions: PROTIEN BARS!! So yummy, taste like chocolate bars and fill you up :)

    Lots of Love,

  2. We were thinking of you guys tonight and praying for Hopes heart to be strong as we were in the emergency at childrens hospital all evening. Turns out everything is going to be fine with our little one. Maybe God just sent us there so we could pray for you while we were waiting! You are an amazing, beautiful, loving mom! Dont let anything tell you different.
    Brent and Shelby

  3. Hope the fruits and vegetables thing works for you. If you want something funny and can handle talk of death (mostly of vegetables...listen to this. It might support your quest...warning it contains the word h*ll in it:


    I will be praying as the meeting goes on today. Take good care,


  4. I'm so glad to see that you can joke in the midst of great stress. Praying for you all. Joanna, a friend of Marg's & Megan's

  5. Will be praying for Hope and that the meeting goes well!! Let others help you with packing and the move. That is definitely something that friends and family can tackle. (And you'll have a great time trying to find everything!!) I know it's unsettling to have others do this for you, but just let it be ok. I hear you on the fruits and veggies! I am starting to get uncomfortable in my clothes, too, and I hate it. What has always worked for me in losing weight is not eating after dinner ~ or 7:00. But try not to think about the weight too much, you are beautiful!!!! Praying, praying, praying for you all!!!!

  6. Hi there... I've been reading your blog and my heart goes out to you. And I know that being at the hospital all the time is extremely stressful and even if you were eating healthy all the time stress hormones alone will take a toll on your body. And with everything that you have going on right now- new house, moving, having Hope listed for transplant, it's probably just a feat for you to get through each day right now without having a nervous breakdown! Hopefully this super stressful time doesn't last, and just becomes a moment in time for you - one of those difficult times in your life when you can look back and marvel at how God's grace got you through each day.

    As a mom of another hypo-plast I know that the future isn't exactly bright, so we just have to learn to enjoy what we have right now, even during the tough times.. I'm so sorry.

    I'll keep praying for you and Hope!