Thursday, 29 November 2012

Bigger is NOT Better

Life with Hope is always full of ups and downs, anything else would be too simple.  This morning we arrived at the hospital and Sadie wanted to hold her sister.  Hope was in a great mood and laid nicely on Sadie's lap for quite some time.  I love to see the two of them together and enjoying each others company, it's beautiful.  I was then able to steal Hope away for some cuddles of my own.

The surgeon came down early, at 9:30, and had me sign an ECMO consent.  As I mentioned yesterday, this is basically a life support machine that is used when the heart or lungs fail.  I have never been asked to do this before, but I reminded myself that they were being extra cautious.  I felt very comfortable with the anesthetist and knew that Hope was in the best hands possible.  We tried to count how many people were going to be in the OR with Hope and guessed that at least 10 people were surrounding her.

One hour after Hope was wheeled out of the ICU, 2 doctors from GI came to meet with me.  Things were worse than we'd thought.  Hope has 4 very large varices in her esophagus that were almost blocking off her esophagus completely.  Hope was then intubated and put under deeper sedation so that the surgeon would be able to inject these varices to shrink them.  If she was bigger, they would put bands around them to destroy them, but this is not possible when you're only 5kg.  As a result, they injected the varices today, and will need to do this again multiple times.  They plan to take her back into the OR in 2-3 weeks.

Hope came down 2 hours after she was taken and was still intubated.  At this time, 7 hours later, she remains intubated.  She did well through the surgery, the varices responded well to the treatment and her heart was stable.  They are struggling to extubate her as she is very sleepy and not breathing on her own.

We have been waiting to meet with the liver specialist.  After hearing about Hope's scope I inquired again about why he had not come to see us.  We found out that he is currently away and will be coming to see us on Monday or Tuesday next week.  We look forward to that meeting as he will be able to give us a lot of perspective on what is next for Hope.

Hope's portal vein clot is VERY severe, even the two branches that come off the portal vein are clotted.  This is not good news for Hope going forward and is going to be a difficult journey.  With the level of pressure the portal hypertension is causing, the varices will return.  There is a good chance Hope could have a bleed in a part of her body that they are not able to reach with the scope, this could be deadly.

We are hoping at this point that Hope will be able to have the portal shunt surgery.  We're not sure how big she needs to be and if this is even an option.  We hope that it is, as it may be our only option.  It was not a day full of great news and there are still many unknowns.  We still praise God that Hope came through the operation and appears to be doing well.

Please pray for strength for our family, we are not anywhere close to being finished with this journey.  We are tired, but still standing and we know that only God could give us that strength.  Thank you for continuing to pray for our sweet girl!


  1. We pray for Hope, Sadie, Shawn and you every day.
    She will do better tomorrow.

  2. Sounds like an intense day. Grateful to hear she came through well and will pray she 's alert and breathing well on her own really soon. Will be praying specifically about the varices and the portal vein clots. Praying daily for sweet Hope and all of you. Praying for miracles and healing in her body, and for continued rest and peace for you. God is good and He is full of mystery. What a road you're walking... we prayerfully stand with you.

  3. Please take care of your own health right now. The kind of daily stress you are in is very draining to your adrenals, they need good salt like himalayan salt, inrefined,and high potency b vitamins, and 1 tsp of acerola powder twice a day. This is a food based form of vit c,its much more healing than ascorbic acid.
    You are in my prayers. Stephanie

  4. Sending hugs to you all. Praying for little Hope and for all of you on this most difficult journey.


  5. We don't know you, but we are standing with you. We are believing and praying for strength for you and your family and specifically for healing for your sweet girl. Hugs to you!

  6. Hi Amy. We continue to pray! My church choir is also praying for your very special little girl and amazing family. We are thankful that she came through her surgery today and that she is breathing on her own. We praise God for the small, but significant blessings and continue to pray for healing and strength for your family.

    Love and many blessings!

  7. Continuing to lift you in prayer.

  8. I keep baby Hope and your family in my daily prayers Love and blesingsto you all xoxo

  9. Hi Amy, Praying for you, Hope and your family every night, God is good and I see him performing miracles everyday with Hope, so happy that you and Sadie we able to spend loving times together just holding each other and cuddling, nothing can compare to the love between family, I also believe it is your love and care that has kept Hope fighting to live each day.

  10. Oh Mama. My mommy heart aches for you. I cry for your little girl being in so much pain. <> and love and ongoing prayers. <3