Wednesday, 9 January 2013

Old Wounds Still Bleed

Today we had our meeting with Cardiology and GI.  Although many of the sad realities of Hope's condition and chances of survival have been explained to us before, it is always difficult to hear.  I'm not sure if my brain just filters the negative information and stops me from accepting it all at once, or if I just refuse to accept reality.

Hope's liver problems are serious, they are more likely to cause us to lose her than her heart that is only half there.  This is so frustrating and we continue to hope that she will be able to have surgery on her liver in order to give her some chance at a future.  We may not find out if this is possible for some time now, all the more time for everyone to pray.

Apparently things are changing once again, the heart cath is back on the table and is likely going to happen in the next two weeks.  We'll figure out if I'll go up alone or not based on which day they schedule it for.  This is not the safest procedure for Hope and we truly hope they find something that will help Hope and we aren't doing this for no reason.

Hope is not on infant formula any longer.  Nothing is working and they have come up with a new plan for Hope that appears to be working.  It's only been 12 hours so I won't hold my breath just yet.  Hope is now on toddler food.  It is essentially the foods you would feed to a toddler, all mashed up and turned into liquid.  They wonder if giving Hope real food instead of manufactured fake food will sit better in her tummy.  Please pray that this is the answer we've been waiting for.

We were told today that if Hope can get off TPN (liquid nutrients), that they would let us go home with a PICC line and an NJ tube.  Both things you usually have to get rid of before leaving the hospital.  They feel sorry for us now and are willing to be flexible if we can get Hope on full feeds.  Please pray for this miracle to happen!

As for Miss Sadie, she is a trooper.  It's not easy to carry her and her heavy cast around.  She can't wrap her leg around my hips to help and my back is already sore.  She did fairly well today but has had a rough night.  She's been up numerous times crying and complaining about the pain in her leg.  It's getting close to midnight and Sadie is in the bathroom with Shawn brushing her teeth.  She's usually an amazing sleeper, this is not like her at all.  It looks like we might have to bring her in bed with us tonight.  Something we are not into and avoid like the plague.

I miss Hope tonight.  After spending the morning with Sadie, being in that meeting for a large part of my time at the hospital and spending the evening at home, I miss my girl.  I managed to run into the mall quickly while Oma sat with Hope.  I had to buy pants for Sadie that will fit over her cast.  I grabbed 3 things and pray they work, I don't have the time to look around and it's too cold to leave her bottomless!

Life is tough and often down right sucks.  In the midst of that, I am always reminded that we have so much to be thankful for.  Last night as I pulled into the hospital parking lot with Sadie to have her leg X-rayed, a helicopter was landing.  When we got inside the ER I watched as a seriously injured teen was wheeled past me.  My daughter broke her leg and it's very inconvenient and frustrating.  On the other hand, she is going to heal quickly and should be just fine.  The teen that I saw last night is not going to heal quickly and be just fine, their family has a long road ahead of them.  It's not different with Hope either.  We have the odds stacked against us and smart doctors telling us that our chances are low.  Other families have already lost their children or are battling even more complications.  I am still blessed, just tired.

It is only by the power of God that I can still say, 'It is well with my soul'.


  1. Hugs & prayers. So proud of your light: not such a little one!

  2. So sorry that you are going through all this. I had a baby in the hospital for a very lengthy period of time as well and understand a bit of what you are going through. Ironically, when I was pregnant he was diagnosed with HLHS too but the doctor was wrong. He stil has heart issues. Regarding the food for Hope, was there ever allergy testing done to determine why she is vomiting it up? My son is allergic to wheat and displayed all the same signs........infant formula very often has corn based product in it. It is a common allergen. Perhaps something to look into and an easy fix.

  3. Amy, my heart aches for you all! I literally cry out to God for you all, most especially for Hope. I am humbled and brought to my knees to repent of my silly worries, complaints and prayers for myself and my family. What you are going through is more than anyone should have to bear and the fact that you are hanging in there and giving thanks and finding peace is proof of our Loving Father's carrying you all through. We pray for a miracle, yet we also pray for His perfect will for you all. I know we've never met but we will one day. I want you to know that we love you and will not stop praying for Hope and for you all. Praying for Sadies leg to heal. Please hang on to Christ. He's using your trials to break hearts and draw them closer to Him. We all, who know of this and are praying are being changed by this and drawn closer to a members of the body who are suffering and closer to Jesus in the process. Much love and big Hugs!!!

  4. Amy,
    I heard this verse yesterday and it hit me so hard. I had this urging to send it to you but as I read over it I did not want to appear insensitive. I didn't pass it on and after reading your postings this morning I felt that urging again.
    Romans 5:3-5 “More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit which has been given to us.”
    I pray that this encourages you today.
    I will continue to pray.

  5. Cheryl, Montreal10 January 2013 at 08:19

    Dear Amy, Shawn, Sadie and "our" little HOPE,
    God bless you all as you continue to seek the right decisions for Hope's treatment...someone mentioned allergy to corn based ingredients in the formula could be what is triggering the vomitting. We pray, please God let this be the answer to all this diarrhea etc. Our hearts and prayers are with you all especially Hope. Sometimes, I'm just working and her little face pops into my minds' eye will trigger me to stop for a moment and pray for her and your family. Such a testament to pro-life too in this day and age when people are doing "selective reduction" of healthy twins and triplets still in the womb! Hope's mission here is not completed, none of ours are as yet. Know that you are being supported by Our Heavenly Father through all His kids all around the world. We send our prayers, our love, a lot of hugs for each of you ..especially for Hope! Go about your day, one step at a time and know that HE is with you!

  6. Hi Amy! I am a friend of a friend from Edmonton.

    You may have already pursued some walking aids for Sadie but, just in case...I felt prompted to message you my experience in case it helps.

    A little girl in my dayhome broke her tibia last spring. She also ended up in a full leg cast for 6 weeks and was too young for crutches. As both parents worked full-time, I was the adult in charge for most of her awake hours.

    I would urge you to ask about a child-sized walker and a pediatric wheelchair. Both of these things saved my back and gave the child her independence. The walker is solid enough for her to walk wherever she needs to go. For stairs, she will probably quickly learn to just sit and scoot. The wheelchair is great for out and about. They are the perfect size for children to wheel around all on their own - you will be amazed how quickly she learns to turn, back up and go forward.

    My dayhome parents contacted Pediatric Homecare through Alberta Health Services. (They even provided morning and evening care to assist with bathing and getting her out the door and/or into bed each day.) You may also try the local Healthcare Solutions store. You can rent them. And, of course, the Calgary hospital should have a connection for you to.

    Regarding clothing, I went to Value Village and stocked up on skirts, pj pants, and one-size bigger pants. Skirts might be a bit cool for winter, I know, but it sure was easier to dress her each day.

    Have faith that Sadie will be mobile again before long. My dayhome little one took 3-4 days watching tv, doing crafts, drawing, and playing with playdoh before she was eager to get herself moving. I just let her determine what hurt and what didn't, each step of the way. I don't know you, except through your messages, but I felt God prompting me to write so I hope these tips help you. Blessings.

  7. After I have followed your blog for a while, I decide to say something meaningful and hopefully encouraging to you, rather than exclaiming frivolously to myself, “It is very sad!”
    Sorry for the latest news about Hope’s health condition, as well as the little accident befalling Sadie. Here are two bible verses, which I hope better express my thoughts to you. “Cast all your anxiety on him because he cares for you.” I Peter5:7. “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Roman 15:13.
    You are an amazingly mature, strong and brave young woman. Although I can appreciate how you love your children unconditionally and protect them in adversities as a mother, I amaze at how you actually handle the hardship and distress with faith, resiliency and dignity.
    You have taught me how to live out the true Christian values. In the midst of your own anxieties and sadness, you have unselfishly reached out to other parents with sick children, by talking to them and giving them emotional support. I’ll continue to pray for your family especially Hope. I pray that you will be at peace with whatever choice you make for her, with God’s guiding light and the help of the doctors.

  8. Praying God's love and rest to fill you. Sending love and prayers your way.