Saturday, 5 May 2012

Not great but still thankful...

One benefit of being in an environment surrounded with suffering is the reminder to be thankful.  There is always a family close by that is suffering in a different way that captures your heart and reminds you to be thankful.  Today, we watched two of our 'heart friends' from the Ronald McDonald House, go through tough decisions and bad days with their warriors.  I was reminded that, although we didn't get the news we wanted, we still have things to be thankful for.

Having Sadie back is wonderful and stressful at the same time.  Moving her around constantly and sending her to a babysitter on a regular basis has brought on some poor behaviour at times.  I find that the stress of our situation with Hope has made me unable to handle the poor behaviour and not be a very patient mom.  Not that I was patient to begin with, but I'm worse now!  Tonight I came back to the hotel alone with Sadie and put her to bed while the others were at the hospital.  It was a time that I cherished as we sat on the bed together to read books, watch some Curious George, sing songs and snuggle.  When she feels secure and loved, Sadie thrives and I want more of that for her.  Please continue to lift her up in prayer as this situation is not what she would have chosen and it's not easy for her at all.

Today we were finally taken for our CT Scan.  Hope was booked to go at 10am this morning after it was cancelled last night.  Apparently, they didn't have a nurse to insert the dye and were unable to do it in the evening.  At 10am there was a patient with a stroke and we were pushed back again, but finally got our appointment and had the test done.  Hope did very well and thankfully did not react to the dye during the test.  We are praying the radiation will not affect her body poorly going forward in life either.

After the test, Shawn and I took Sadie out for lunch to spend some time with just us.  She was really excited to be alone with us and feeling "normal" for a small portion of the day.  The CT results took a few hours to get back to us.  They weren't what we were hoping for, but could be worse.  There is a clot in the SVC, it has obstructed 25% of the flow to the heart.  This does not take away her potential for having the Glenn surgery and for that we are truly thankful.  The plan is to keep her on a high dose of blood thinners and trust that the body will dissolve the clot itself over time because of the high volume of blood that is pumped through the SVC.  The clot in the innominate artery is not expected to ever reopen as it is 100% clotted and does not have any flow going through.  This is less serious, although still not great for our little one.  Please pray that the blood thinners do their job and dissolve that clot in the SVC to give Hope a strong, more stable heart.

Hope is still on the respirator as she wasn't tolerating the weaning very well this afternoon.  They've had to slow down and are hoping to remove it late tonight or early tomorrow.  They also plan to remove her stitches from surgery in her chest within the next 24 hours.  Some of the procedures are only small steps, but we need to celebrate every victory we have and praise the Lord for any progress!  Each step we take in recovery will bring us closer to Calgary and being home again.

The doctors are all agreeing that, in Calgary before we left, the echo results showed that her SVC was completely clotted and had no blood flow at all, but had improved sometime during the flight from Calgary to Edmonton.  I would like to say with certainty that it can only be the power of prayer.  Thank you for bringing that request to the Lord and being a part of an awesome miracle that truly saved our daughter's life.  The chances of us finding a heart transplant for Hope, which would have been our only option, in such a short time, would have been almost zero.

We have been blessed to find a place to stay from Monday to Sunday next week.  A couple that live just a 5 minute walk from the hospital, are going away and have offered their place to us.  This will be so much easier for getting back and forth to the hospital, especially once Shawn returns to work and we don't have the car!  It will also be wonderful for putting Sadie to bed and not having to sit in the dark of the hotel room until she falls asleep!  Another blessing that we are very thankful for.


  1. Praying that God will continue to hold you close to Him and give you strength for each day. It is encouraging to see you continue to find ways to count your blessings in spite of the challenges that come your way. Blessings on both you and Shawn.

  2. You don't know me (I think a friend of a friend of yours posted the link on Facebook), but I have been praying several times a day for Hope and all of the rest of you for the past week and a half. I trust that the spirit of God will give you the peace that passes all understanding as he works his healing powers in Hope's precious body.

  3. Hey Amy, not sure you remember me, I met you at Mark and Laurels and i knew Shawn from camp friends back in the day. I have been following your blog since just before Hope was born. I just had a son myself and following your journey has brought both my husband and I to tears on a few occasions...especially if I read it while looking at my little guy nearby. We have been praying everyday and night for Hope and you and your family. My hearts literally hurts for you guys, but it has really pushed me to have the faith I know God calls us to. He can/will HEAL! May your family and precious Hope continue to be lifted and feel the prayers and Gods comfort and peace around you and you continue this journey. Love and hugs and sweet sleeps.
    Jennifer (Kalhs) Rottier