48 is a Bad Number.

This weekend has been pretty mellow around here.  Hope was given a pass on Saturday and Sunday for the day.  We left the hospital after rounds and did not have to return until 7:30pm.  Weekend rounds are a bit of a joke, nothing ever changes.  Hope is still on pure breast milk, this should be changed Monday morning.  Pure breast milk doesn't have the calorie content that Hope needs to gain weight.  The amount of energy that it takes for her heart to function as it is, burns twice as many calories as the rest of us.  This is why we mix it with a high concentration of formula.

Tonight the impossible happened, and only because an army stands around us.  My mom took Hope back to the hospital after her pass and agreed to spend the night there with her.  This is a huge sacrifice as she struggles to sleep in the best of conditions.  Hope's room is not an ideal sleep location.  My mom basically signed up for an all-nighter with Hope.  Shawn's parents are up visiting and took Sadie for a sleepover and to spend the day with them tomorrow.  She was thrilled to go with them and excited to have them around again.  After everyone left, Shawn and I were in shock that we were alone for the night with no responsibility.  What a beautiful gift in the midst of the craziness that is our life.  We went out on a long walk and had the chance to talk to each other without distraction.

We had a wonderful time of prayer on Saturday and really appreciated the support and love for Hope and our family.  We truly believe in the power of prayer and beg you to continue praying.  It's always good to be reminded that we're not alone in this journey with Hope.

Hope has been fairly stable this weekend.  She's still on oxygen, but a small amount.  Her belly is at it's high point of 48cm.  It looks extremely uncomfortable and is likely the reason that Hope needs the oxygen to help her breathe.  She has developed a bad rash around her hernia that appears to be improving as well.  We don't do a whole lot, but sitting around the RMH with nothing going on, is better than having drama with Hope's health.

Tomorrow was supposed to be Hope's hernia surgery.  Unfortunately we were bumped until next Monday.  This week will likely include Hope's PICC line being put in (a more stable IV) and an infusion of protein.  This is not a liquid medication that a pharmacist concocts and sends up.  The protein infusion is done through donor samples.  We are constantly thankful for those that donate and have a friend that has organized a blood clinic on the day of Hope's surgery in Calgary.  Here is a note from her for anyone that would like to donate and help bless other families in similar situations.

Monday, Oct. 1 is an important day for Baby Hope, as she is going in for surgery.  A wonderful way to support her is to donate blood, which she may need before, during or after her surgery.  It doesn’t matter what blood type you are, as the intent to help Hope is all that matters.  There is a group booking set aside for Hope at the downtown Calgary clinic the morning of her surgery on Monday Oct. 1, and if you would like to attend the clinic as a group, please contact Rayna at rayna@orng.ca.  There are only 7 spots for this particular booking, and Rayna can take as many as 4 people should you wish to car pool there.  Alternatively, you can meet at the clinic or book your own appointment through 1-888-2-DONATE or www.blood.ca.  It is preferable to either book an appointment or contact Rayna to be part of the group booking as walk ins are not always accepted.  The mobile clinic that day is in Highriver, should you wish to book an appointment there.