Friday, 25 January 2013

A Miracle in 2013

Hope was taken down to the OR at 11am this morning.  The liver specialist in Edmonton and the one in Calgary told us that the varices would take numerous treatments to heal and were a grade 4.  The fact that we waited so long to treat them this time was potentially risky, she could have had another large bleed.  Around noon the GI doctor came out of the OR with pictures from the scope he had just put down Hope's throat.  The varices, which he showed us, were there once again.  They were now only a grade 1 and were not even bad enough to inject.  This is truly a miracle and not what anyone expected, other than those that believe in a powerful God!

Hope has varices, yes.  These varices are nothing like they were the first time and should be so much worse.  She will not have to go in for another look for 2-4 months.  We were originally told that she would need to go in every 4 weeks for 6 months.  We are praying that Hope's liver clot is improving and that this is evidence of another miracle happening in the portal vein of her liver.  A mom can certainly hope for the impossible when it comes to her baby.  Especially a baby that she entrusts into God's care, the author of impossible.

Another thing that needs to be mentioned is Hope's ascites (fluid in the belly).  This was a major issue in the summer and we were told that it would take a few years to improve.  This fluid is currently VERY minimal in Hope's abdomen.  It has improved in a major way and is no longer one of our challenges.  This is a sign that Hope's liver is growing new veins to get the blood where it needs to go and will give her more time.  Praise the Lord!

After her procedure, Hope had another reaction to the anesthetic.  She turned completely red like a tomato and was very lethargic.  The same reaction we've had numerous times after anesthetic.  An hour or so after some Benadryl, Hope's body pulled through and the reaction subsided.  I believe the difference between the last anesthetic and this one, was the Benadryl.  Last time I asked the anesthetist to give Hope Benadryl right after extubation.  That appears to be the difference between the last two procedures and her bright red face.

This afternoon we were thrown a huge curve ball.  The cardiologist pulled me aside to talk about next steps for Hope.  Although this doctor is new on the scene, I have a deep trust and peace about him working with Hope.  Something that only the Lord could put into me and I'm assuming it was for our conversation today.

Our surgeon, Dr. Ross, met with Dr. Kantor and another cardiologist that we trust and value her opinion.  They looked at the pictures of Hope's aorta from the echo, CT Scan and heart cath.  They are not firm on their decision and have once again asked us to decide what to do next.  They feel we could wait a month for Hope's heart surgery, but are also willing to do it now.  Here's the catch...they feel that waiting at HOME may give Hope a bit of time to grow and develop.  This would give her a better chance to pull through the surgery well and heal more quickly afterwards.

They are recommending that if Hope can tolerate these feeds and get off, or to a minimal level on her oxygen, that she be discharged next week.  She would be discharged from Edmonton and we would drive Hope back to Calgary to live in our house until her surgery!!  They are not positive that this is possible and would wait to see what Hope's little body does and let her decide.  If she is not able to tolerate her feeds and cannot get off oxygen, we would go in and have surgery next week or early the following week.

If we get Hope back to Calgary, but she doesn't do well at home and is re-admitted to the hospital, we would be brought back to Edmonton and she'd have surgery ASAP.  We are not sure that Hope is strong enough to come out of the hospital and be at home, but we're thinking we may try.  Shawn is currently driving up and we plan to sit down and have a good discussion about what is best for Hope when he arrives.

If Hope were to go home next week, we would be brought back in a month to have a sedated echo.  If the aorta continues to look kinked or is looking worse, she'd go in for surgery at that point.  If by some miracle, which we know is possible, the aorta looked better, surgery would be delayed once again.  Our ultimate dream would be for Hope to NEVER have this extra open heart surgery.  Our God is able and we pray that His plan is for Hope to come home and not need this surgery.  If that is not His plan, we trust that His ways are greater than our own and that He will carry us through that difficult journey.  It does not make the pain any less, but it gives us the strength to walk through it.

One more thing...Hope's PICC line is leaking.  As a result, they have decided to give her a blood transfusion this evening before pulling the line tomorrow morning.  Please pray we can remain off TPN and do not need to get a new line.  We would love our friends to give blood as well, Hope has sure used a lot of it and we appreciate the sacrifice of every donor.

We are anxiously excited if this works.  At the same time, we do not want to minimize the severity of Hope's condition.  We still have a lot of hurdles to overcome and are still in need of your continued prayers.  Hope's liver clot is a major issue and life threatening.  The kinks in her aorta and the need to reconstruct it is not good, we pray her heart grows in a healthy way and that she can pull through another open heart surgery if she needs it.  We are also praying that the varices continue to stay small and do not get worse.  This way we are at a lower risk of another major bleed.

As you can see, today we have much to praise God for.  We also have many things to pray that God gives us wisdom for.  Would you join us in asking God to allow Hope's body to decide what we should do?  We pray that if she needs this surgery right away, that her body would reject her feeds and her oxygen rates would drop.  If she is not meant to have the surgery, please pray that she would be home and living with our family by the end of next week.  Hope, it's time to show those doctors what a miracle is!!


  1. I have been following your story for the last few months & praying continuously for Hope & your family. This truly is amazing news & shows just what God an do. I will continue praying & am confident Hope will continue to defy the odds.

  2. Oh wow!!! Amy... I'm speechless.
    Hope for Hope!
    We will pray exactly as you've asked and trust the God that knows exactly how he's going to unfold the next month.
    Joining you guys in trusting Him will be a privilege!

  3. What amazing news! I'll be boldly praying for another miracle--that Hope tolerates her feeds and can come home!

  4. I continue to pray - there is nothing more I can do, but I am honored to do it.

  5. Hope for Hope. What an amazing feeling. Thank you God for your miracle, and thank you Amy for your post that clearly points to an awesome God at work in your lives!

  6. Can't wait to see you guys again. I know we will. She is a miracle and your strength is miraculous. She is gods gift to you but remember... You being her parents is gods gift to her! Loving you guys every day.

    The Hoffmans

  7. Hello Amy and Shawn. Although we have never met, your story continues to touch me. I read this last post through tears of joy. I will pray for Hope's miracle! Continue to be there for your daughter, you are amazing advocates and parents. (As for the blood donations, my husband continues to donate his O negative, CMV negative "baby blood"). :)

  8. We are friends with Aleina and James and reading this blog just makes me so happy that my faith in god has grown immensly. He truly is amazing and you can see his work in Hope. I will be praying that Hope will show you what she needs. Thinking of your family : )

  9. Thanks for sharing...Still praying here for all of you that God would show you the way to go and that you feel peace about it. Our God is able...and His plan perfect...

    Praying from PA, USA

  10. Thanking God and praying as you've asked!

  11. Hi Amy

    I am friends with Jen Rottier, and have been following Hopes progress for a couple of months. My family and I will continue to pray for her and your family. I just wanted to say that I think you have an AMAZING attitude, and it is so wonderful to see that you have so much faith in this difficult time. You are a light to others, and im sure a light to those around you in the hospital with babies in similar situations :) I believe this is just the beginning of a bunch of Miracles for baby Hope :)

    Sending lots of love and prayers :)