Monday, 28 January 2013

Escaping Hope's Room

We are now at 18 mls an hour!  This deserves celebrating as it is getting us closer to potentially taking this little lady home.  We would love to have Hope at home with our family, even though we'd have to bring her back in a month for her heart surgery.  I'm skeptical that she would be strong and healthy enough to stay at home, but I'd take one night at this point.  Hope has had 2 spit ups and one throw up in the last 24 hours, this is minor in comparison to her history.  We continue to hope and pray that she will tolerate her feeds.

The blood cultures came back and are officially negative!  Praise the Lord for that result, as we don't have a line to run antibiotics.  Unfortunately, the results also showed that Hope's magnesium levels are very low.  They need to give her some supplements of magnesium, but don't have a line to put them into her blood.  As a result, she will need to take them orally/through her feeding tube.  This is known to cause diarrhea, something we are already battling.  Please pray that this will not dehydrate Hope as we don't have a way of increasing her fluids.  Many people have asked me if Hope could take probiotics to help with her stomach issues.  In short, probiotics have a potential to kill Hope.  The doctors are not even willing to consider them as the risks outweigh the benefits, I agree.

The most exciting part of today, was taking Hope out in a stroller for an outing.  Now that she is off oxygen, we were able to walk around the hospital with her for 15 minute intervals.  It felt so good to get out of her room and to stimulate Hope with some new sights.  She absolutely loves it and stays wide awake the entire time.  With all the excitement of going for a walk and the need to digest her food, Hope is napping more frequently throughout the day.

I got to be a part of Sadie's bedtime routine over Skype tonight.  It's so nice to feel like I am still a part of her day from so far away.  Thank you for continuing to pray for our family as we raise our girls, often in different cities.  Thank you for continuing to pray for Hope as well, we have seen so much progress in the last couple of weeks.  We still have setbacks, but overall we feel that every step forward should be celebrated and that God should receive the glory.


  1. My family and I are celebrating with you tonight, Amy. Hope is such a warrior! I can just picture how wide-eyed she would be walking around the hospital today with you. She is truly a delight and I hope to get some cuddles in again soon with her.

  2. Praise God for all the victories! So happy that there's no infection... an answer to the many prayers. I am going to be at U of A hospital Wednesday morning and would love to give you a break if you are still there. I would understand if you felt uncomfortable with that, since we've only met a few times, but I'm definitely familiar with the hospital routine, hanging out with babies with lots of lines, owies, and crabbiness too! So if you're up for a break or even just a little company, I'd love to swing by.

  3. Have they tried an epsom salt bath soak to gently bring up her magnesium levels?

  4. I thought of you and your family many times yesterday wondering how Hope was making out. I am always astounded at how this little girl has infiltrated the lives of so many others. Thank you for sharing your journey. It reminds me daily of how grateful I am for the 'little' things.

  5. Following you through Kendall's updates on facebook. Grateful to be a part of following your story and uplifting your family in prayer.

    Praying for you and your family and celebrating the success of the most recent feeds for Hope. Thankful for the little escape from the hospital room today. Also celebrating the time you had at bedtime with your daughter tonight over skype - small treasures to cherish.

    Will continue to pray!

  6. hope the feeds are still going well and increasing. continuing in prayer for you all! - Annie in toronto