Friday, 1 March 2013

Lucky 13!

Today Hope weighed in at 13 pounds!  For the first time in her life, this is true weight gain and not water retention.  The doctors have even commented that her face is looking chubby in a healthy way.  I never thought I would be so excited about weight gain!  Preparing Hope's feeds and having to get to the hospital at a certain time in order to be sure everything is ready in time is stressful.  When you see progress like that, it's hard to be lazy!  Tomorrow morning I will have to get to the hospital early as Hope's feeds will run out.  It's truly a guess each day as you never know how much of each bottle is fatty, and how much of it is the low fat milk.  I didn't thaw enough milk to get her a full 24 hours and it takes 24 hours before the feed is ready for the fat to be removed properly.  As a result, I have to get there nice and early to get everything ready for her.  She is worth it.

Seeing Hope develop so much over the last few weeks is an amazing distraction.  It makes it more difficult when the doctors come with negative news.  The cardiologist came today to let me know that they had heard from Boston.  Boston felt that Hope should have a shunt added to her heart in order to assist with the high pressures in her aorta.  They also suggested that the Glenn (her second surgery) being reversed would lower the pressures.  Our cardiologist does not feel that reversing the Glenn is a good option for Hope.  I am not even sure if we should be considering anything with the improvement we're seeing in Hope.  It's difficult to accept that she could need another open heart surgery when she's doing so well.  They are still waiting for a response from Toronto.  Once that information arrives, the surgeons and cardiologists will sit down and discuss all the information and make a suggestion to Shawn and me.

Hope is now at 6 mls an hour with her breast milk.  We will begin going up by 2 mls per day until she reaches full feeds, 36 mls an hour.  She needs a higher volume while on breast milk, because it is low fat!  That will take us another 15 days to reach full feeds.  At that point, the doctors will begin adding the fat back in.  If she does well, they'll transition her slowly to the formula she most tolerated.  If these things are all successful, we'd be home in about a month.  The staff are all skeptical that this will happen, but most have been skeptical that the breast milk will work and it appears to be.  I am choosing to be optimistic and believing that she'll be home in April.

Last night I was up until 1am packing things up in the basement and getting things organized.  Tomorrow Shawn will spend a few hours running things to the dump with his dad.  Once the junk is out of the way, I should be able to start getting things properly organized and back into place.  I often wonder what the point of these annoyances are, I'm guessing God is teaching me something through the extra challenges.

Today I was reading about friendship and how true friends remain in the midst of struggles.  I was reminded once again of the amazing friendships that I had before this began, but also the ones that have been created.  I love to be a friend and I find it difficult when I don't have the time and energy to pour into people in the way that I want to.  I owe so many of my friends some good quality time and I look forward to providing it one day.  Thank you for continuing to pray, I wish you could all sit and enjoy her smiles these days.


  1. Throughout all your struggles you have been such an amazing friend and person to all around you. You are one of the most caring friends I actually have ever had. Thank you. And thank you Jesus for our Hope smiles! :) -Love, Me (you know who this is...who else is awake reading the blog at 315am haha) <3

  2. Thank you for all the updates....I feel like I know you and your family so well, yet we have never met (I am a friend of Kelsey in NJ). My family and I are always talking about you and what you are having to deal with on a daily basis and can't imagine how you remain so are an inspiration and we have HOPE that you will have your baby girl home with you one day :)

  3. :) Yay yay yay for weight gain! :)

  4. 13 pounds - you are doing things right Amy and Hope is looking so well and she seems to have an amazing personality. Her smiles make me smile!

  5. ann martin sarnia2 March 2013 at 19:20

    Continuing to keep your and your sweet little Hope in my prayers. Wonderful to hear of her sweet smiles and weight gain.

  6. Breast milk is amazing! I have a friend who breastfed her heart baby and she ended up not needing surgery at all. She believes it is because of the breastmilk. I'm not quite so sure but it certainly seems like Hope has done really well on breastmilk. Hope you can continue with it as long as possible!

  7. Cograts on 13 pounds!! Wonderful news! Keep on Keeping on.

    Naomi in Ontario

  8. Keep going Hope!! Great news on the weight gain. We are praying continually for your little fighter.

  9. This is wonderful news. We need a picture one of these days when you have time.

    I felt so sorry for you on Thursday with your water issues but didn't have time to respond. It's incredible what you have had to deal with in the last year in addition to Hope's concerns. It's hard to believe one family could go through so much. Bless you for your attitude and not getting upset with the inconvenience of a flood. And God bless your nanny, she certainly was a gift to you the other day.

    I also had no idea you would have to prepare the breast milk or what it would take to separate the fat out. As if you need that extra work! But I guess it's easier when you see positive results. We will keep praying for all of you.

    from Regina