Monday, 26 November 2012

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.  


  1. Snuggle away, Amy. We are all rooting for the Hope-ster. You are certainly not alone.

  2. very grateful for little steps forward and uneventful days... makes good sense that she feels more calm and willing to sleep with her mama holding her. will pray for sadie and her daily care situation. oh, and yay for you pushing for bloodwork once a day... four pokes is a LOT for a little peanut (for anyone really). well done, warrior mama. continuing to stand with you and hope with you for good things to come.

  3. Agreed, you are certainly not alone. A friend of mine posted the link to your blog and I have been following along now for a few days. I've gone back and read through your entire journey and am amazed at your strength and faith - what an inspiration! Be reminded that we are praying for Hope and your family during this time. Many hugs and prayers.

  4. Hi...I'm a heart mom too and following your blog. I'm praying for your little girl. If you ever want to talk to someone whose been there, let me know and I will meet you after work for a coffee at ACH. I remember those first months...they are very hard. Take care Amy.
    Jen Beleshko

  5. It is such an honour to pray for Hope. You are bringing glory to God in every word you write - the positive steps are our favourites of course, but your love and faith in our Redeemer/Creator/Friend shines through in all circumstances. May you feel God's love and strength today. May you feel Jesus' friendship for He is your brother and may you rest in the comfort of the Holy Spirit. I am so happy that Erika is heading your way. She loves you sooooo much! xo xo Kathy

  6. You indeed are not alone! People all over the world are praying for you, your husband, little Sadie and oh course Hope! You are an amazing testament to God's glory, just thought you should know. May He bring you comfort and peace, and strength and endurance in this journey!
    Megan E shared this link (I know her from church) and as it turns out, my husband's cousin's youngest child also has what Hope has. They have a Carepage...under JoshuaCourageBarnes if you wanted to connect with another Christian mama who's been in your shoes.

    We will continue to lift up Hope, and your entire family. God bless!

  7. I am praying for Hope, Sadie, You and Shawn. The dedication of your love for your child inspiring. I ask that God would give you the daily-hourly-minutes of strength you need. This is an amazing journey you are on that someday you will look back and see the whole picture. One day at a time...

  8. If nothing else people are praying for HOPE with faith filled hearts that the Good Lord will mend her little heart or give her a new one (transplant doable?)and that she will be a testament to what love and pray can do. We are also praying for each member of the family as you travel this broken road together...that you are renewed each day by the love that surrounds you!

  9. You don't know me, but last night after reading over the last week or so of posts on your blog my husband and I wept. These were tears of parents who have been where you are. The feelings all came flooding back in and our hearts were breaking for yours. Our journeys sound very similar. Our son was born VERY sick at 32 weeks, had numerous surgeries, illnesses, PICC/CVC lines, months on the ventilator, major nutritional/growth issues, was rejected for a transplant because he was too unstable, and the list goes on - I think you can relate. I want nothing more than to encourage and uplift you right now. We were told our son wasn't going to make it, that we should prepare ourselves, that there was "nothing more they could do", we had family all around - and on multiple occasions he pulled through. He spent 13.5 months straight from birth in the ICU. Then frequent visits after coming home. He will be 5 years old in January, he is alive and well (has some obvious daily challenges, but alive and well). I share this with you to give you hope, and a renewed faith in our God who heals. Our God who makes the impossible, possible. Our son is like your Hope, a total miracle!! There are miracles we have seen that can't be explained by doctors, because it could only be God! God has such a plan and purpose for these amazing little ones, and as impossible as this journey seems His hand is on it all. I would LOVE to be a support to you in any way I can. I am already sharing your blog with as many people as I can - I am enlisting the prayer warrior army who prayed for our son and us (and still do!). I know how knowing you are covered, that Hope is covered in prayer, keeps you going. Please feel free to email me,

    Standing with you in faith for Hope's healing,
    Courtney de Geest

  10. IDEA .... Poor little baby suffering so much! Amy, why don't you ask for a bit of freezing before they poke around to take blood? Once a surgeon did that for me and it was FANTASTIC. The prick from the freezing was very slight and I didn't feel a thing while they poked and prodded for a vein. Love and Prayers for Hope xx

  11. But now thus says the LORD,
    he who created you, O Jacob,
    he who formed you, O Israel:
    “Fear not, for I have redeemed you;
    I have called you by name, you are mine.
    When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
    when you walk through fire you shall not be burned,
    and the flame shall not consume you.
    (Isaiah 43:1-2 ESV) Lots of love, Rosalind (Scotland- and we are very distantly related:-))