Thursday, 31 January 2013

A Sleeping Beauty

Sleep is important and babies need a lot of it, but when we sleep for 48 hours and are difficult to wake up, there's something wrong.  Hope continues to sleep all the time.  She is slightly more alert today when she is forced to wake up by the doctor or nurse moving her a way she doesn't like.  I held her for a brief period of time, but once again she cried out in pain and I had to transfer her back to bed.  I'm fairly sure it's the fact that both sides of her body have uncomfortable things coming out of them and she can't get comfortable while held.  On her right side she has the PICC line that is almost in her elbow pit and her arm is taped to a board.  On the left side she has an IV in her scalp and a chest tube between her ribs.  She has every right to be uncomfortable right now.

The doctors are certainly worried about her, but are at a loss for what to do.  Last night one of the cardiology residents slept at the hospital in order to be close by in case something with Hope's condition changed.  This resident has been a complete gift through our entire time in Edmonton.  She was briefly down in Calgary and came in to see us in the PICU after Hope's bleed.  Just seeing her face was a comfort in a difficult time.  I truly trust the staff that is on and do not feel in any way that they are being flippant with Hope's condition.  They have tested everything they can, looked for reasons for her to be like this and are coming up empty.  We simply have to wait for it to improve or to start creating symptoms that will tell us more.

Hope's left lung continues to drain fluid.  At this point she has drained over 600 mls of fluid from it.  It's good to get it off, but if it continues to drain constantly, they will be forced to stop feeding Hope.  At this point Hope is taking FULL feeds to her stomach!  It's absolutely crazy that this is happening and we praise God for this miracle.  If the fluid continues, the next step is to stop feeding the child in order to force the lungs to dry up.  Having watched a roommate of Hope's go through this, I am praying that Hope does not need to experience that.

We are still scheduled to go into the OR on Sunday.   There is no guarantee that it will happen, but we are planning accordingly.  Hope is on a different blood thinner in preparation for the surgery and they are working to make her as strong as possible.  She continues to receive full feeds as well as TPN (the liquid nutrients).  Being so small, they decided the added calories and nutrients may help Hope put on a little weight or at least maintain what she has.

Many of our friend's children continue to struggle.  The little boy I spoke of last week (Joel) is still in the PICU and struggling.  Little Jaydyn was re-admitted to hospital today and is struggling to breath.  I value the other families deeply as they truly understand what you're going through.  I find it impossible to not fall in love with their children and hurt with them for their babies as well.  It's a constant reminder that there is suffering all around, we need to support one another.

Thank you for continuing to pray for Hope and for our family.  I'm really looking forward to Shawn and Sadie coming back up tomorrow.  Please pray for safety as they travel and that I'd be able to balance my time with each of them.


  1. Oh Amy! My heart continues to ache for Hope, you, Shawn and Sadie. I pray daily, often several times for all of you, especially Hope. Dear Father, Please, please heal this precious baby girl. She is so loved and we all look so expectantly to You for her healing. In Jesus' name we ask and pray.
    Much love to you all. <3

  2. Joel has been on my mind for a few days now, a family friend has a little one at the stollery right now and his family has asked us to pray for Joel as well. thinking of you all as you tuck in your babies tonight, Joel, Austin and Hope...Praying!

  3. I am praying. Right now I'm praying and typing from the hall outside the cardiac ward here at SickKids. having some food before trying to grab sleep. That you have done this hospital life for SO long is just heart wrenching. I am praying for miracles, for wisdom and understanding for everyone involved, strength and grace for you. Sending you mama hugs and prayers tonight.

  4. Dear Amy,
    I have been following yr blog for a while and my heart ache for you each time. I guess, its by His grace you are able to be soo strong.
    Know that you are in our prayers. We hv a small group of prayer warrior praying for Hope and yr fam.
    Cheers, Siusan - Jakarta.

  5. praying for you all and thinking about you. praying specifically for tomorrow in case it's still on. and praying for you, Amy. May our God of miracles display His power in Hope's body and in your lives. And may you have peace tonight.

  6. Praying sweet Hope grows in her sleep! My kids always seems to be growing when they have really sleepy days. I pray that God allows Hope to grow, even in these long testing times of living in the hospital. God is bigger and Hope is not the norm, may He cause he to grow as needed no matter where she lay her head at night! Praise the Lord! It's my prayer and my hope that all the sleep means nothing more than good things for Hope!