Sunday, 9 December 2012

Two kids, Two sickies.

Things continue to be interesting in our house.  This afternoon I sat in Hope's room at the hospital with Hope, while Shawn sat in the ER of the same hospital with Sadie.  Sadie has an ear infection on top of her croup.  Thankfully the wait was not too long for Sadie and Shawn.  Tonight we put her down before dinner and she had a 2 hour sleep before waking up in extreme pain.  We are alternating between Advil and Tylenol to keep her settled and waiting for the antibiotic to kick in.  A sick toddler involves of lot of crying and tantrums.  This is incredibly draining on Shawn and me and we don't find we have the patience right now to handle it.  Please pray that she would get better quickly and that we would have the patience to care for her until that happens.

We are feeling very frustrated with Hope's feeding progress.  This seems to be one of the major things that keeps us in hospital.  After switching Hope to bolus feeds (large volume in less time) she had to be switched back to continuous feeds because of intolerance.  We have been stuck at 10mls an hour forever!  Today I asked if they could try adding more volume to see how Hope would tolerate it.  She is now at 11mls and has not yet thrown up.  Please pray that she continues to tolerate her feeds so we can get her off the liquid nutrients, pull out the PICC line and bring her home.  We are waiting, but are losing our patience as each day passes.  

Today they were able to take Hope down a little bit on her oxygen.  She still has a long way to go, but any progress is worth celebrating at this point.   If Hope was off oxygen, we could move her around the room more, take her out for walks around the hospital and would be one step closer to home.  Please pray that she would be breathing without assistance soon.

Along with the ups and downs in this journey, comes anticipation and disappointment.  I usually have some goal in mind of when Hope will be to her next stage.  Whether that is a surgery, a trip home or a step forward in her medical care.  Right now I feel completely numb and void of any anticipation.  I struggle to see how we can get Hope home in the next few months as we seem to make such minimal progress.  I think I am protecting myself from disappointment and assuming she'll be in the hospital for months.  Secretly, I hope we can be home before the New Year, but will simply not allow myself to believe that's even possible.  I think the optimistic version of myself is happier and I long to feel like Hope will be home soon.  Please pray that she starts making more positive progress and that Shawn and I will be encouraged and see some glimpse of an opportunity to have her at home with us again.  

I know that God is using Hope at the hospital.  The nurses adore her and we have built friendships with many of our nurses.  We have been truly blessed by the care we receive from the staff and feel confident in their ability to treat Hope.  The staff work tirelessly to treat Hope, but also to make our family more comfortable.  I hate to wish our time with them away, but I am dying to bring Hope home. I just hope that whatever impact God has planned for Hope to make in the hospital, that it happens in the next few weeks and isn't a long project!  All I want for Christmas is Hope in our home with Sadie.


  1. Praying that Hope will be coming home with you for Christmas. Love and prayers to you all.

  2. Praying for renewed strength, unconditional patience, a joyful heart, freshly sprinkled grace, and abundant peace in your hearts over these next few weeks! My heart rejoices with yours in the tiny victories and it aches all the same as you struggle to bring your precious angel baby home. Although it's so tough to wait on God to act, His timing is no mistake. His timing is simply perfect; praying your heart may calmly wait on His mighty healing hand to move in Hope's body. May you feel encouraged in being reminded of the love God has for Hope. May you choose to see the blessings God brings to you each day, even when the days seem so discouraging or disappointing, and the end is not in sight. What a beautiful testament of God's faithfulness your journey has been. My heart prays fervently for a miracle this Christmas for your family!
    Lindsey J Bleach

  3. I am praying for some much needed encouragement for you both.

  4. Hi Amy! I am a fellow Christian, and have been following your blog. Your family sounds amazing. My son had to have heart surgery. We weren't in the hospital very long, but lucky that we had amazing family around us to help us :) I was wondering if there was anything I can do for you? Babysitting, some meals... Anything. Please email My name is Suzanne.
    Praying for you and your family, for strength and comfort in knowing God is in control :) Even though we may not be happy with the timing, there's a reason and a plan!

  5. I pray that all of you have the much needed strength and that Baby Hope is home for Christmas