Wednesday, 5 September 2012

Reasons for Everything

Our world is full of stuff that seems unfair and ugly, and it's hard to understand why things happen sometimes.  I may never fully understand why my little girl was only given the right side of her heart. Some days, I feel like I get a tiny glimpse of why we've hit some of the bumps in her journey and I am reminded that God is in control at all times.

Hope was taken for her heart cath at 1pm.  They let me take Hope right into the OR and they put her to sleep in my arms.  It was incredibly beautiful and disturbing at the same time, if that makes sense. She was given the first drug and her eyes glazed over and she started to suck on her soother very slowly.  After the second drug she made a funny cough and started to close her eyes, she was completely out after the third.  It sounds terrible, but I felt like I was watching a dog being put down. It was nice to know that she never cried or felt alone.  She fell asleep while I still held her.

Hope was under for 2 hours before we were called to come back and meet the doctor.  Waiting in the little room for the doctor to come in is never fun.  You try to stay positive and also prepare yourself for the worst.  The doctor is so used to informing parents of the findings, that everything comes out in such a routine manner.  She tells you that your child lost a lot of blood and had to have a blood transfusion in the same tone that the Subway employee tells you they don't have light mayonnaise.  It was so good for Hope that this cath was done when it was done, and it wouldn't have been done if she wasn't sick and brought to Edmonton from Calgary.  We praise God for providing a way for her to get here and have the cath done.  They found a severe obstruction in her aortic arch that was causing heart failure.  They had ruled it out and told us she wasn't in heart failure, but she was.  They were able to inflate a balloon in the arch to expand it and remove the obstruction.  This stops the heart failure and helps her blood to flow more correctly.

During the procedure, Hope's PICC line blew and was lost.  Thankfully, it happened near the end and  it didn't cause too many problems.  They used the cath entry point in her leg (her femural artery) to insert a new central line to her heart.  They checked all of the pressures in Hope's heart and have confirmed that she is a perfect candidate for the Glenn!!  Praise God for that amazing news.  The surgeons will see her tomorrow morning and decide when they will operate.  We are really hoping that they'll decide to do it ASAP and would appreciate your prayers as we await that decision.

Hope is back in the PICU now and is still intubated and under heavy sedation.  They plan to extubate her at 10pm this evening if all goes well and will pull her central line from her leg as well.  We've asked for the line to be pulled to avoid infection and clotting.  They managed to get an IV into her other foot and we would love you to pray that it holds and she doesn't need to be poked a million times more.  They are having a little problem with her leg that had the central line in it.  It was completely dark purple and cold when she got back to the PICU as it received no circulation during the cath procedure.  I felt a little nervous and worried that she would lose her leg, not what she needs! It appears to be slowly improving and they hope to see it improve further after her central line is removed.  Please pray that there would be no permanent damage and that the blood would begin to flow properly through the right leg again.
This is a picture to show you the colour of her right leg.  It's disturbing but hopefully it sends you to your knees!

Please join us in praying against any damage from the procedure that has not been discovered yet; clotting, infection or further damage to her vocal chords from intubation.  She has been through so much in the last few days and is being such a trooper.  Her stomach is still distended, so please continue to pray for wisdom as the doctors seek out a diagnosis for this.

Hope is in the same bed in the PICU that she was in after her Norwood surgery.  It feels a little odd to be back there.  We think a lot about our first time through this and I think a lot about Lincoln.  The staff still ask about his family and seem to have a smile as they talk about him.  He has made an impact in this world that is not forgotten and that is beautiful to me.

It feels good to know that Hope is in good hands tonight, they're going to give her a sedative tonight to help her sleep.  Her heart needs the rest after such a long day and they don't want to push her.  I'll sleep well knowing that she isn't wondering where we are.  We feel amazingly blessed to know that she will move forward and receive the Glenn, hopefully soon!  Thank you for walking this road with us.


  1. Thank you for the update. Praise God Hope can have the Glenn! I think of and pray for your little girl every single day! Seeing the pictures brings back so many memories of just 3 months ago when we were up there...they have such great care in Edmonton. Praying for you as well. I know how hard it is to go through all of this. Sending love and prayers your way.

  2. Pardon my ignorance, but what is a "Glenn". Hope is so beautiful in the pix you've shared - I pray that God brings her & you thru all this so you can enjoy a healthy beautiful miracle girl as she grows.

    1. It's the name of the second open heart surgery that she needs to have.

  3. Amy,

    I read your blog often as my boyfriend's cousin, Amber Chatten posts it. I have sent many a prayer for Hope and your family. My Soul just cried when I saw Hope's picture, I wish I could send you all the strength in the world, but with all m might, I will continue to send positive energy and pray for your beautiful baby girl.