Friday, 9 November 2012

That's My Girl!!

This morning at 4:30am the phone rang as Shawn and I were sleeping.  I knew it was the hospital and felt instantly sick to my stomach.  The night nurse told us that Hope was not very stable and they had put her back on oxygen and a heart assistance medication.  I wish I could say that I was shocked, but sadly, it was quite the opposite.  It almost felt like the world had come back together and things were as they should be.  Hope doesn't go through a major surgery without a set back, that's simply not how she rolls.  This was the Hope I knew, the one that likes to keep you on your toes...and, more importantly, on your knees.

A few hours later we arrived to find Hope much more swollen and extremely unsettled.  She received incredibly high amounts of sedatives and narcotics today.  She would only be temporarily relieved though.  It was heartbreaking to watch.  The Glenn causes incredibly painful headaches as the body adjusts to the new pressures in the body.  Hope is clearly feeling them and is miserable, so we pray they don't last for too long.

A morning X-ray showed a lot of fluid in and around Hope's right lung.  This should have been draining through the chest tube on that side, but was not.  A surgeon came in to reposition the tube and felt after he finished that it had not been a success.  Within an hour as we met with the doctors about what to do next, God intervened.  Hope's chest tube drained 35 ml of fluid in front of an audience of many!  It was amazing, and we were thankful not to have to make a trip back to the OR.

An ultrasound and echo were done in the afternoon.  Hope's heart function is looking great and does not appear to be the cause of our problems today.   She does, however,  have a large amount of pressure where the SVC and the Pulmonary Arteries were attached.  This is not surprising due to the size of the pulmonary artery.  They feel that it will naturally expand over time and the pressure will stabilize.  Sadly, they found a clot that has formed as a result of the surgery.  We are encouraged that it is currently very small and only partially attached.  They are hoping that it will either dislodge and filter through the lungs, or dissolve.  Please join us in praying that this is the case and we don't run into further complications because of the clot.

A second X-ray was done this evening and verified that the chest tube has removed the fluid around the right lung.  She is still quite wet on the lungs and is now receiving even higher doses of diuretics.  We are hopeful that her lungs will continue to dry out and be healthy again soon.

Hope will likely spend the rest of the weekend in the PICU and may go up to ICE if she does well over the next couple of days.  The staff are suggesting that we stay in Edmonton until Hope is extremely stable all around and not just surgically stable.  They usually send us back to Calgary as soon as the heart surgeon is no longer needed.  It may be a much slower transition this time, and we feel this is likely best for Hope.  Maybe we'll have our friends decorate our house for Christmas!

We are praying that tomorrow will be a more positive day for Hope.  We are so encouraged to hear of the number of people praying alongside us.  I truly have no words as I stand over Hope as she struggles.  I know that God knows my heart and hears the words the rest of you speak.  I know that if I start to pray at Hope's bedside, I just cry and lose control.  Thank you for stepping in when I'm not able to speak.


  1. are so strong! Sully had his first 'accident' yesterday...smashed his mouth...blood everywhere...and in that moment all I could think was that the panic, fear and worry I felt was nothing compared to what you feel for Hope every single day. I couldn't do it...honestly. We pray for Hope every day and are so glad that Hope has been given such a strong family to support her. Love from Jayme Jonny and Sully. xo

  2. It is a privilege to pray for you and Hope and your family. It is what we should do as the family of God. I am so blessed to be a part of this journey and rejoice with you in each step. It is amazing how much love I have for you and your family and we have never met. God is amazing. I will keep on praying.

  3. Oh, Amy! I said those exact words to God today, "Lord, I don't even know what to say or how to say it, but you know." I am so amazed by the way you described her chest tube beginning to drain again--it didn't seem as celebratory from your Facebook update earlier. How amazing! I, too, feel privileged to pray for your sweet Hope. She truly has stolen my heart! Praying you will have a must more restful night and start to your weekend, but wondering if maybe Hope just doesn't want you to leave her?! We love y'all and will continue to pray for a steady recovery.

  4. So strange about the tube suddenly draining 35mL even though the doctor felt it had been incorrectly positioned. I have no medical knowledge at all, but it makes me wonder if maybe her body needs the tube in a different place than most babies...