Saturday, 2 June 2012

Losing Lincoln, the Brave Lion.

Today has been a sad day for us, as we found out that Lincoln went to be with Jesus on June 1st.  Lincoln's family moved into the Ronald McDonald House at the same time as us.  There were 3 of us pregnant moms from Calgary, all carrying heart babies and due around the same time.  Only 2 of us came home with our warriors.  It's so difficult to think of Lincoln's parents, the fight they've been through over the last 8 weeks and the deep sorrow in front of them.  Please pray for them, we want to see them surrounded with love and all of their needs met as they grieve their beautiful boy.

Everything with Hope seems minor in light of the news about Lincoln.  We continue to struggle with her feeding tube and are getting very frustrated.  Hope was back at the hospital today with Daddy.  We have a new feeding tube in, once again, and have been told to use it all weekend, no matter what.  Apparently they can't do anything for us on the weekends and want us to use the tube until Monday.  We are hoping they'll have some better options for us.  Please pray that Hope will start to take her feeds orally and we'll be able to get rid of the tubes.  Today she took 10ml's from the bottle, she needs to take 60ml's.  I desire to breast feed Hope, but would settle for bottle feeds at this point.

Our appointment with the nurse from Shawn's insurance company went well.  We should find out next week what kind of coverage we've been approved for.  Please join us in praying that we'll be able to have a night nurse, at least a few nights a week.  I'm feeling ill today, I'm pretty sure it's from being over tired and not getting enough down time.  Having a night nurse would make a world of difference for all of us.

Friday was a bit frustrating, the hospital called and asked me to come in right away to have Hope's blood drawn.  They wanted to test her blood thinner levels and it has to be done exactly 4 hours after her morning dose.  This is horribly inconvenient with feed times and especially when you have no warning.  It took them 3 tries and 45 minutes to get the sample.  Hope screamed the entire time and was really unhappy.  Her levels were 0.05 less than they had wanted, so her dose has been increased to repair this.  Unfortunately, this means we have to rerun the test on Monday.  I have a cardiology appointment at 8am with Hope, but have to be back at 12pm for her blood work.  It's going to be an interesting day with a lot of improvising her feeds and meds.  Pray for me as I work through all of the challenges with Hope.

Today we took Sadie out on a date with Mommy and Daddy.  A nurse friend came over to take care of Hope while we focused on Sadie.  We took her to Build-a-Bear, and she got a new dog that barks when you press his foot.  She paired him with some glasses and a pink purse!  She's a pretty funny kid.   She knows what she wants and is set on making it happen.  It was a very kind gift we received from a group of people we've never met.  Once again we are humbled by the kindness of others and reminded that we are not in this alone.  After some lunch Sadie suckered her Daddy into a ride on the carousel.  It was a great time and we truly cherish the moments we have with both of our girls.

1 comment:

  1. So grateful for your updates. We continue in prayer for you, and now for Lincoln's parents and family. I can only imagine their grief right now. Praying for your coverage and that you'd get all the support you need. also praying for Hope's eating, and that you'll be able to breastfeed - and in the meantime, get onto bottle feeds - sooner than you expect. bless you guys. - annie, paul and miles in Toronto