Tuesday, 20 November 2012

Between a Rock and a Hard Place

The internet is not working at the hospital tonight and so Amy has asked me (Amy's mom) to write the blog for her........

Today was another tough day for Hope.  She continues to battle this fever and Tylenol has not been successful, as of yet, in breaking it.  She was re-x-rayed today and her x-ray continues to not look good.  They are still not ready to make a definitive diagnosis of NEC, at this point, but they worry that that is what she has.  Hope's feeds have now been turned off and we are back at ground zero in the feeding department.  The plan is to ultrasound her tomorrow and, if the ultrasound looks bad, we will begin full NEC procedure.  The reality of this sucks really bad, there is just no nice way to say it.  If you have a minute, you can google necrotizing enterocolitis and I'm pretty sure you will come up with the same sentiments.  

To make matters even worse, Hope received a positive result for a line infection.  This means that her PICC line, which is our only access point, is infected.  There is potential that they will have to pull this line.  If they do, they will have to take Hope into the OR tomorrow to attempt another insertion.  Chances are slim that this will be successful and, when Amy asked the doctor tonight, "What will happen if she has NEC and we have to pull the line?", the doctor answered, "We would be screwed".

Tomorrow is going to be a big day for next steps for Hope.  We basically need a miracle to happen overnight once again!  We are asking people to pray fervently that her level of infection in the PICC line is low enough that we will be able to treat the infection with strong antibiotics through the infected line - this is the only possibility we have of saving that line.  We also need to pray and plead that Hope does not have NEC, as this will put her on long term liquid nutrients, which will always require a PICC line and will eventually begin to attack her liver, which is already comprised because of the portal vein thrombosis.  Unfortunately, nothing is simple with Hope's complicated anatomy.

Hope is still very uncomfortable and they think it is because of the pressures in her head.  Because she is a cardiac patient, our pain options are limited.....Tylenol or Morphine.  Unfortunately, the options in between cannot even be considered.  It is so hard to watch little Hope struggle and restlessly toss and turn, as she fights so hard to sleep.  I can hardly bear it for a mere couple of hours a day and yet Amy is there 24/7, pushing through the exhaustion and emotional turmoil, all the while being Hope's biggest advocate and voice in the midst of so much confusion and indecision, not to mention the immense heartache and disappointment. The thoughts of going home with little Hope were just around the corner and almost in sight.  It's so hard for Shawn and Amy and all of us to accept this latest turn of events.  

Again, as I head to bed and try to sleep, I am bombarded with the myriad of unknowns that tomorrow and the days to follow hold.  It's in times like these, that I have to remind myself of the things that I DO know.  I do know, without a doubt, that God loves our little Hope more than any of us do, and that His heart is breaking right now too, watching her struggle through the pain and discomfort.  I know that He deserves our faith and our trust, even when we are straining to make any sense out of our present darkness and uncertainty. I know that He is still good and that He is my Rock, my Deliverer, my Strength, my Portion, my Stronghold, my Friend, and my Healer.  I will continue to ask for Him to heal Hope and to move in a mighty miraculous way in her frail little body, like He has done so many times before.  And, even if the healing doesn't come, Lord help me to still proclaim, "Blessed be the Name of the Lord".

Please, take some time to bring Hope, her Mom and Dad and her sister Sadie, and her present situation to God in prayer.  We know there is literally an army that God Himself has raised up to intercede for Hope and her family and we just ask you now to pray like never before.  Oh God, who holds this life in His hands, may it be your will for her to overcome these medical mountains.  To You be all the Glory.

"For I am the Lord, your God, who takes hold of your right hand and says to you, "Do not fear; I will help you".  - Isaiah 41:13


  1. I don't know you...but I am praying!

  2. Hope is in my prayers.

  3. we live in Kitchener and have been following Amy's blog, in May a young girl named Lydia stepped off her school bus and was hit by a recycling truck. brain injury and broken bones put Lydia into a coma... she is now talking, praising God with her own voice and although she has a ways to go she is alive and dreaming of things she wants to do. I believe in miracles, because Lydia is one so I am praying that Hope gets one as well. But we are also praying for comfort and strenghth your daughter is a woman of strenghth and she is so encouraging and inspiring! Blessings to you and your family! thanks for posting!

  4. Hello, First I am praying.
    Second, I don't know what stages Hope may be in with NEC, but I wanted to offer this article that I just received from Journal of Pediatric Medicine and perhaps your doctor would want to see this. My daughter's surgeon said she is pushing for probiotics in the NICU, which is hard because they aren't yet FDA approved and that she was pulling this article.
    In general terms NICU babies may get NEC because their intestines are depleted of good bacteria (probably due to antiobiotics flushing out both good and bad bacteria, then their good bacteria (flora) is never restored, and when baby is given milk, bad bacteria thrives on the milk product and sugar, the damaged intestines cannot break it down. Probiotics would flood the system with good bacteria, giving the intestines a chance to heal. I HOPE this might be possible.
    Forgive me if this is inappropriate, but I felt that I should provide this information.



    The optimal treatment of necrotizing enterocolitis (NEC) is a common challenge for pediatric surgeons. Although many studies have evaluated prevention and medical therapy for NEC, few guidelines for surgical care exist. The aim of this systematic review is to review and evaluate the currently available evidence for the surgical care of patients with NEC.

    Data were compiled from a search of PubMed, OVID, the Cochrane Library database, and Web of Science from January 1985 until December 2011. Publications were screened, and their references were hand-searched to identify additional studies. Clinicaltrials.gov was also searched to identify ongoing or unpublished trials. The American Pediatric Surgical Association Outcomes and Clinical Trials Committee proposed six questions deemed pertinent to the surgical treatment of NEC. Recent Cochrane Reviews examined three of these topics; a literature review was performed to address the additional three specific questions.

    The Cochrane Reviews support the use of prophylactic probiotics in preterm infants less than 2500 grams to reduce the incidence of NEC, as well as the use of human breast milk rather than formula when possible. There is no clear evidence to support delayed initiation or slow advancement of feeds. For surgical treatment of NEC with perforation, there is no clear support of peritoneal drainage versus laparotomy. Similarly, there is a lack of evidence comparing enterostomy versus primary anastomosis after resection at laparotomy. There are little data to determine the length of treatment with antibiotics to prevent recurrence of NEC.

    Based on available evidence, probiotics are advised to decrease the incidence of NEC, and human milk should be used when possible. The other reviewed questions are clinically relevant, but there is a lack of evidence-based data to support definitive recommendations. These areas of NEC treatment would benefit from future investigation.

  5. i am praying... interceding for sweet Hope. Praying for creativity and godly supernatural insight and wisdom for the doctors. Come, Lord Jesus, and be glorified... bring healing.

  6. Praying with you and for you in Burlington, ON.

  7. I am praying for you dear sweet Hope and your family. Remember, God says, "I will uphold you"

  8. I am praying for Hope and her family

  9. I am praying! "Completed work" is what keeps coming to mind. My heart aches for Hope, and you, her family. I appreciate your perspective shared in this post. I know what it feels like to be stuck in a place the medical world cannot understand...even in my own life. And I have seen God triumph in the face of impossibility. I lift each of you up to Him and I speak healing over precious little Hope in the name of Jesus. Please know I really do care.

  10. This sounds so discouraging, yet God! Looking back at all He has done, makes me know that He is very capable in completely taking care of this medical situation.
    I read some of the posts, and agree with the one concerning probiotics...why not? It all makes sence. I know that when females take antibiotics, we always are warned to eat yogart at that has the "good" bacteria in it, as the antibiotic takes away all bacteria, and so we need to replentish it.
    Usually women get yeast infections, or vaginal infections (itchiness etc) and the cure for that is a simple one.....yogart! I had a pharmacist tell me that...and it was a duh moment for me.
    I have always wondered concerning Hope with all the anitbiotics that have been flushed through her body, how they are managine her "good" bacteria? Maybe she is having side effects from all of that, and it isn't pain? I have no idea...just want you all to know, that I admire you for your faithfulness in keeping up posted, for always calling on your prayer warriors to pray, and always telling us what is going on in everyone's life.
    My heart goes out to Amy...as I know when this all started, she has really changed, and has become such a strong Mother and Christian.
    God is doing a work in all of you....He is working in little Hope, and we are praying for her. Hope is an amazing little fighter, and will pray that her infection, her line, her fever, and everything else that we feel is so huge, and it is...will subside, and that God will heal her tiny body...and she will feel His presence around her, and sleep peacefully.
    Amy will feel God's presence, and feel at peace with what they decide to do, and pray that she will feel encouraged today with some hope from somewhere?
    God is faithful, we know that. So we pray!
    thank you for sharing what is going on there.....!
    xo xo xo xo

  11. I was just reading in Romans 8 this morning about the Holy Spirit interceding for us with groans that words cannot express, in accordance with God's will. I am having trouble finding the words to pray in this new turn of events, but I know that "the Spirit of him who raised Christ from the dead" is interceding for us all today. We are praying for you all from Vancouver Island!

  12. I shared this on Facebook. Many of us in the Vancouver area are praying with you.

  13. Praying for you!

  14. Sending all of you prayers and God's strength and some big warm hugs. Xoxo

  15. Praying for comfort for mommy and daddy and also strength for Hope's body to battle this latest setback!

  16. Micah 7:8.though I sit in darkness, the Lord will be my light..Isa.43:1b-3 Fear not, for I have redeemed you; I have summoned you by name, you are mine. When you pass through the waters, I will be with you, and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned, the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Saviour.. May you know God's strength to carry you through..praying for this...only He can truly comprehend your heartbreak and pain ...take care..rest in Him

  17. Praying and weeping in Swan River, Manitoba

  18. Hi,

    I don't know you but I have been following your story for awhile now and would just like to say that Hope and your family have been in my prayers. Will continue to pray for healing for Hope, for comfort and strength, peace and guidance.
    Deuteronomy 31:8 It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”

  19. praying for you in Hamilton.

  20. I have been following your blog from a friend on facebook. You have been in my prayers!

  21. I don't know you, but we receive your blog through a friend. My husband, as pastor, requests prayer for Hope at church, and I request my teacher friends in our prayer group on Tuesday mornings to pray for her. I will keep her and your family in my prayers as well.