Tuesday, 8 May 2012

Afraid of Optimisim

Last night we were told at 11pm that Hope wasn't tolerating the cpap as well as expected and they feared they'd need to re-intubate her.  Thankfully, that was not the case, and she got through the night on the cpap with some trouble-shooting by the nurse.  At 3 pm today, the doctor ordered the cpap machine to be taken off and a high volume oxygen line to be started.  The cpap machine was kept in the room as a precaution, as they weren't sure how she'd do.  She tolerated the change well and was free of her not-so-cool mask.

These are wonderful steps in the right direction and are getting us closer to Calgary.  Having been burned in the past, when we thought we were doing well and almost lost her, optimism is a somewhat scary thing.  We truly fear it in some ways because the disappointment is so painful.  Instead, I'm thankful for every small victory, but being cautious of getting carried away with how well she's doing.  She still has sickness in her lungs and isn't breathing as well as she should be.  We can only pray that this improves each day and we don't take any steps backwards.

The best part of today was cuddling with my little girls.  I spent some one-on-one time with Sadie in the morning and Hope in the afternoon!  You know it's time for a cuddle when you sit beside Hope and wonder if you could pick her up when the nurse isn't looking and manage to avoid any of the alarms going off on the machines.  I did restrain myself, and at 4:45 today, I got to hold Hope for the first time in 10 long days.  It feels so good to have her in my arms and I look forward to being able to care for her at home some day.  

We are hoping that the doctors will give us some idea of when they think we'll be able to head home at rounds tomorrow.  Now that Hope is off the breathing machines, there isn't a lot of reason for us to be here.  It will come down to the surgeon.  He gets to make the final decision and will likely be hesitant because of what happened last time.  We may also run into problems if there are no beds available in Calgary.  We've been told that this could delay us as well.

Hope is now on 16 ml. of breast milk an hour.   This is the most she's ever received!  Her sugars have come up a bit, but not enough to cut back on the glucose supplements they've been giving her.  We need them to come up a bit more and are hopeful that the feeding with help.  It's nice to finally have some use for the mass amounts of milk we've been storing.

Please continue to pray Hope's infection and her healing, our return to Calgary at some point and for Hope's glucose levels.  Please also continue to pray for Sadie.   She does so well when we keep her with us all day and just trade off at the hospital.  It's very difficult for us to do, but works wonders in her feeling of security and behavior.  Tomorrow I hope to spend most of the day with Hope in my arms!!


  1. Such a simple request, just wanting to hold your daughters in your arms! Wow, I don't think people realize it's been 10 since you last got to hold her....gosh that made me cry......we will keep praying hopes lungs gets better. Thank you God for the little miracles each day.

  2. You took that step of Faith yesterday, in pulling in the rocking chair. It may not seem like such a step, BUT it was!! You are trusting God to do the miraculous, and to do what you expect Him to do.
    He loves you more than you know, and also knows your mothers heart for your dear little one!.
    So glad that He has brought Hope through this far, and pray that HE will continue to do so.
    Optimisim is something that we all need, yet when you get hurt from it, it is hard to allow yourself to go there.
    Trust God for everything. You can't go wrong with that.
    Praying that your baby stays where she is, until it is safe for her to return to Calgary. praying for all of you as you wait. God is in the Waiting.....He will take care of all of this!
    Praising Him with you for the small steps, yet knowing that He has a great plan in store. It is so hard not knowing it.
    God bless you, and may HE give you guys more time to hold that precious little girl!
    Love the pictures, it keeps us all knowing how she is doing.
    Thanks and God bless you all as we continue to pray with love.

  3. Amy and Shawn,

    Though the rest of your journey will likely remain unclear in the coming months and years, we are so happy for your family to make it to these small milestones.

    We pray that there are more and more little milestones, and that Hope demonstrates few negative long term effects from the interventions required. We pray for your continued emotional strength in the face of uncertainty.

    Lyndsay and Dean

  4. So glad to hear this good news! :D We are continuing to pray for all 4 of you.

    Alain & Karen