Monday, 7 May 2012

Trading a tube for a mask

Today went incredibly fast and I feel like I ran a marathon at some point cause I'm exhausted.  We got up and checked out of the hotel and moved into the 'borrowed' condo this morning.  It's an absolute perfect location for us to walk to and from the hospital while Shawn is at work with the car.  We got to the hospital late this morning but managed to be there for rounds anyway!  The doctor was pleased with the progress in Hope's lungs and decided to attempt extubating her, but wanted to put her on a cpap machine just in case.  

In the afternoon they took an X-ray to confirm that her lungs were ready before they moved forward.  The X-ray confirmed that she was looking better and the extubation was a go.  A team was assembled and the extubation began.  Hope's lungs were still not healthy enough, from the infection, to breath on her own and the cpap machine was started after the tube was removed.  She's currently on a low setting with the cpap and seems to be tolerating it well.  They're hoping she'll only need the assistance for 24 hours and will be moved over to a small oxygen tube under the nose by tomorrow night.

They've continued to talk about our return to Calgary, and we think it could definitely be coming soon if Hope continues to make steps in the right direction.  The doctors in the PICU feel that we are safe to return to the Calgary hospital (as there is no need for any additional surgery), to continue Hope's care, but the surgeon didn't want her to go until she was breathing on her own.  If all goes well with the cpap, we hope to be sleeping in our own beds by this weekend.  

Hope's sugar levels are still really off and they can't seem to get them to come back up.  The nutritionist did some calculations this morning and figured out that her protein consumption has been very minimal and she's been fed minimally because of all the procedures she's been having.  They've agreed that once she is receiving proper nutrients, they will likely resolve itself.  They've restarted her feeds and are giving her more than she's ever gotten, but still less than she needs.  It's hard to believe my baby is a month old and still weighs less than 7 pounds!  If we don't have any more bumps in the road to recovery, she should start gaining weight soon enough.  

Please continue to pray for Hope.  As we discovered last week, good days can turn into bad days very quickly.  The more we talk with the doctors, the more we realize that Hope was truly on death's door last week and is here today by the power of prayer and the mighty hand of God.  Tomorrow is a new day, and we pray a day filled with small victories for little Hope.  Her heart friend Holly was flown back to Calgary today and we look forward to joining them there.  We have another Calgary heart friend here that we're believing will be close behind us as well.  


  1. Been praying every single day for your little girl, Hope! So glad to hear she was extubated. I like what you said about praying for those small victories everyday. Yes, it's a difficult journey, but God is so strong & capable to carry us! Love from another heart mom.

    we'll be going up to Edmonton at the end of this month for the Glenn
    p.s. I heard about your blog from 2 different friends in Calgary.

  2. So encouraged to read this post Amy. We continue to pray, and are so happy to tell the boys of Hope's progress. Today Eli came through the door after school and his first words were asking about baby Hope.
    We feel honoured to know you and your family Amy, you have been so strong and courageous. Such an amazing testimony to all those you are in contact with no doubt. Our Father sure chose well when He trusted and blessed you with little Hope.
    Our family loves your blog - we always check for updates, share them with our praying friends and feel so much more capable of bringing your needs to Him.
    Love you guys,
    Christine (and Tim) C.

  3. when you are weak, He is strong. Every little victory is a miracle. Sounds like you don't have time to breath. Any parent who has taken care of a child in the hospital knows that we kill ourselves being by their side every moment, eating at irregular times, sleeping on odd surfaces, (chair or floor), and sometimes neglecting a shower, thinking that washing the hands and face will do. I have done this, as well as many parents, sometimes for years before they realize that they have forgotten not to totally neglect themselves. We are praying diligently, along with many others, that Hope is on the road to recovery, as hard as the road is, that everyday will be a little miracle. Maybe you think it is premature to say these types of things but i have faith that there is light at the end of the tunnel. I know you want to be there at her side every moment, who wouldn't? I have been interceding for your guys, fasting, and I felt to say this.
    Don't forget to breath once in awhile, smell the flowers or drink a cup of coffee for enjoyment, something, so that when hope has her good days you can enjoy her, when she gets better you will also be healthy. You guys are amazingly strong and I thank God for giving you strength. May God also protect your marriage from misunderstandings and fighting about nothing because your just too tired....we are praying for you guys, for Hope (what a little bundle of strength she is), and continue to pray for those little miracles that encourage us everyday. Love you guys and this letter/note comes from love

  4. Like so many others, we are constantly praying for your precious baby girl. I am glad that you are starting to see small, but important, victories! We will continue to pray for you guys!!