Friday, 24 August 2012

Make Room for the Breakdown

It has arrived, my breaking point.  I am beyond frustrated and really discouraged today.  Something needs to change soon or I might really lose my mind.  Today I have the ability to eat without running to the bathroom shortly after, a step in the right direction.  Sadly, I still feel terrible and have been getting worse as the day goes on.  I pulled myself together and went over to the hospital with Sadie and a friend.  Shawn took Sadie out to spend some time with her, and we stayed at the hospital.  It had been 64 hours since I'd last seen Hope, I don't think I'd gone more than 5 before this.  Her cry is weak and sounds so sad from the breathing tube during the MRI.  She was very fussy, they said she's been like this the entire time.  I put on a mask, washed my hands and took my sweet baby into my arms, she was silent and fell asleep.  Hope wanted her Mommy and must think I've completely abandoned her.

The GI doctors have decided to take Hope off breast milk completely and replace her feeds with a special type of formula.  This will increase the protein she receives and give her a specific fat that they feel will be easier on her stomach and could help with the fluid retention.  They're not really sure, but have decided to give this a shot.  We're up for anything at this point and are willing to try it out.  They also want to tap the fluid in her abdomen to run some tests on it.  They're waiting until the cardiology meeting on Tuesday to make further plans for this.  If Hope is sent to Edmonton for a heart cath, they will have them tap the fluid while she's sleeping through that procedure.  If they aren't going to do the heart cath, they'll freeze her tummy and do it through ultrasound here.  That means a lot more waiting for us, and continued questions that go unanswered.

Some people have said we may get discharged on Sunday, while others say they aren't planning to discharge until after the decisions are made on Tuesday.  We're totally confused and are waiting to find out what's really happening.  The main problem with Hope having heart issues as well as GI issues, is two departments.  We get different stories from both specialists and are constantly confused about what's going on.  They write orders to change something, wait for the other department to agree and it takes 12 hours to make a small change.  Hope is the one that suffers through all these delays and we are losing our patience.  Hope is on continuous feeds again tonight, she should be back on bolus feeds but the orders weren't written in time to make the change!

Sadie is on her third sleepover of the week and misses her Mommy and Daddy.  I wish I had the energy to take care of her, but it's simply not possible.  Shawn and I only see each other in passing, have difficulty talking on the phone because of the hospital cell phone reception and feel very disconnected.  Tuesday could not come fast enough at this point, I feel like throwing in the towel and going on vacation by myself until we have some answers and life feels a bit more normal.  In case you didn't pick up on it, we need your prayers this weekend.


  1. You poor darlings. I've been following you silently for acquaintance of your sister. Your family is on my mind and in my prayers day and night. Sending you love and hugs and crying out with tears for you.

    Psalm 121:1-8 NASB

    I will lift up my eyes to the mountains;
    From where shall my help come? My help comes from the LORD,
    Who made heaven and earth. He will not allow your foot to slip;
    He who keeps you will not slumber. Behold, He who keeps Israel
    Will neither slumber nor sleep. The LORD is your keeper;
    The LORD is your shade on your right hand. The sun will not smite you by day,
    Nor the moon by night. The LORD will protect you from all evil;
    He will keep your soul. The LORD will guard your going out and your coming in
    From this time forth and forever.

  2. Hi Amy,
    This is so frustrating! Why can't the communication at the hospital be more efficient? I will continue to pray for all of you and that Hope's well-being will be top priority for all the specialists involved. Thank you for sharing your struggles, there are many people who are praying for you who don't even know you!

  3. My heart aches for you. I can understand your desire to throw in the towel in complete despair. Why oh Lord? And how long oh Lord? No easy answers that's for sure. Where is God in all of this for you as a family, and also as individual members with unique needs? He knows each need and is there...though it doesn't look like it or feel like it as you struggle through each challenging day and night. I will be lifting you up in prayer...that He would fill you with His peace which passes all understanding...and that He may keep your mind stayed on Him. oh Jesus...hear her cry! Thankyou.