Little Steps Forward

We know that each day we have with Hope is a miracle.  Today is no different and although it makes life complicated, we are happy to be with Hope.  When I arrived in the PICU this morning, Hope had just fallen asleep in a vibrating chair.  She woke up again at 2am and would not settle until 8am.  I'm wondering if a lot of it is her age.  If she wakes up in the middle of the night, she must wonder where her family is and has trouble falling back asleep.  She has slept most of the day in our arms and appears more settled than she was yesterday.

Hope is back on a very low dose of blood thinner, this is better than nothing.  We are hoping they'll soon be able to up her dose and reduce her risk of clotting.  Hope was started back on her liquid nutrients as well.  She is still not receiving any fats and is back in newborn diapers.  This is discouraging, we worked so hard to have her gain weight.  We'll have our work cut out for us once again.  The doctors in the ICU are talking with the GI specialists and are working to get Hope back on formula sometime today or tomorrow.

Hope's scope was cancelled this morning, they've decided it's too dangerous to push her.  They want to give her another day or two to stabilize before they put the scope down.  We feel okay with this plan as she is not currently bleeding.  The poor girl deserves a few days of rest after all she's been through.  

I spoke with the doctors this morning and they've agreed to drop her blood work down to once a day.  It's not able to be taken from the line because of the blood thinners running through it.  They were previously poking her at least 4 times a day.

My mom has been here in Alberta helping us with Sadie for the past few months.  She will be heading back to Michigan tomorrow morning.  This will be really sad for all of us, her included.  It's time for her to spend some time with my dad, he's been patiently waiting for her to come back.  A family friend is flying out the next morning to take over Sadie's care.  There are people in Calgary that are willing to take Sadie, which we deeply appreciate and often use.  Our greatest struggle day to day is feeling sorry for Sadie.  She's a very happy and well adjusted little girl, but she loves to be in her own house.  It's easier for us to relax when we know that Sadie is at home and has as much consistency as possible.  It takes a lot of the stress away and is a true blessing.  We looked into hiring a Nanny, but found it very expensive as a single income family.  We do receive some coverage for sibling care from the government because of Hope's condition, but it's simply too low to interest anyone.  

Thank you for continuing to follow along.  We are so touched by the number of people we meet that are praying for Hope.  It is a constant reminder that we are not alone in this journey with Hope.