Wednesday, 29 May 2013

New Normal

What does normal life for us even look like?  We are not actually sure and to be honest, is normal possible after planning your own child's funeral?  We are in Radium, B.C., with my family and I find parts of myself are still here, but that I struggle to find the 'old Amy' from before Hope joined our family.  I find myself laying on the couch and lazily watching the rest of my family doing things for myself or for Shawn and Sadie.  I struggle to get up and do things at times and find myself tired.  In the mornings Shawn and I usually snuggle with Sadie for a bit, but then send her to my parents or my sister to be taken care of while we sleep in.  I feel badly at times, but also realize that we need the sleep right now and we should take advantage of having them all here.

In the midst of our sorrow and the pain of losing Hope, we also feel freedom.  We have been in hospital or isolated at home for the last 13 months of our lives too.  It feels weird to wake up late each morning and not have somewhere to be.  It feels wrong to not rush to the hospital.  It feels incredible to have Sadie with us all day and not send her off to be raised by someone else.  I have spent more time with Shawn in the last week than I have in 13 months.  In some ways we are a family again, yet our family is smaller than it was ever meant to be.

I find it too difficult to pick up my nephew.  He is so much younger than Hope, but feels the same size in my arms and makes my heart ache too deeply.  I hear myself refer to 'our girls' before I realize we only have one now.  I say 'my kids' and realize it is no longer a plural statement.  I don't know if these things will ever get easier.

On Tuesday before we left for Radium, Shawn and I went to the funeral home and picked up Hope's ashes.  For the first time since August, we brought Hope into our home to stay.  We had talked about spreading her ashes in different places and lots of other beautiful ideas.  Now that Hope is back with us, we do not feel we are ready to let her go.  One day we hope to spread her ashes somewhere beautiful, but for now we want to keep her with us.  We may become that creepy family that carries her around for years, we don't care.

On our way out of the city, I managed to walk into the Children's Hospital to drop something off for the nurses on Hope's old unit.  It was painful and I know I need more time before I can go back with Sadie to visit all of the amazing people there.  It was good for me to get that "first time back" out of the way and to know that next time it won't be the first and I can go in knowing that it's ok.

We continue to feel so loved by all of those around us and are so blessed by our community.  I often wish Ellen or Oprah were personal friends of mine so I could have them do wonderful things for all of the people that have selflessly served our family.  I dread the day Shawn returns to work and yet I know we need to have a more normal routine.  Until then, I cherish this time with my family and daily miss the feeling of Hope cuddled up in my arms and the sound of her voice when I walked into her room each morning.  I miss her big blue eyes, I miss everything about her.

Monday, 27 May 2013

Saying Goodbye

I'm not even sure where to begin today.  Typing in the address for the blog is difficult enough, now to put my emotions into words feels like an impossible task.  I should first say that through this tragic reality we have seen incredible kindness from our community.  I have not cooked at all and my freezer is full of frozen items to be eaten next week.  It's an incredible blessing when someone drops off dinner to Shawn and me, but currently people are dropping off dinner for my entire family, 16 people.  A person I have never met started an account to raise money for our family to go on vacation, a friend offered to clean my house, my table is covered with flowers and the cards took hours to read through.  We do not question whether we have the support of our community around us right now.  We most definitely feel loved.

I guess I'll begin where I left off.  On Wednesday morning after updating the blog, I went into Hope's room and sat on her floor.  The tears that came turned into sobs and soon my mom and sister were next to me as I'm sure the sounds woke them up after very little sleep.  I was numb, exhausted and overwhelmed.  Shawn did not even attempt to get out of bed.  Around lunch time Shawn's parents came to drop off Sadie and Shawn pulled himself out of bed and had a strength that was incredible.  Having Sadie is so important for us right now, she gets us out of bed every morning.  We pulled Sadie aside and told her that Hope was with Jesus.  She was confused and to be honest, appeared more afraid of our tears than of our words.  We decided to drop it and let her ask questions as they came to her mind and follow her lead.

It was probably 4 pm on Wednesday before we even began to consider Hope's funeral and how we wanted to celebrate her life with our friends and family.  How do you even begin to plan a funeral for a 1 year old?  I had googled funeral homes in Calgary but found the pages covered with pictures of old people and advertisements about pre-planning your funeral.  It reminded me of how wrong it is to lose a child and I was unable to proceed.  My sister in law jumped into action and called some funeral homes, started the process and made all the arrangements for a funeral home, a church to host the funeral and a caterer.  I sat on the couch and watched her on the phone, unable to move.

On Thursday at noon, Shawn and I drove in silence to the funeral home.  Anyone who knows me would be able to tell you that I like to eat when I'm hungry.  I do not tolerate feeling hungry very well and will start to feel ill if I don't eat something.  Usually a meeting at noon would be terrible for me as I would worry that I wouldn't be ready for lunch before and would be starving before it was over.  On Thursday, I didn't care if I ever ate again.  We sat down with a woman that took us through catalogues of caskets.  They are horribly ugly for children and look like a minky 80's suitcase.  We couldn't bear the thought of our precious daughter in something so ugly.  We decided to put her in a nicer, much more expensive casket.  The funeral home wasn't sure how long they needed the casket to be.  In order to figure it out, I had to take the sleeper I had brought of Hope's and lay it out in the casket to see which one she would fit into.  It was the most disgusting thing I've ever had to do and it will forever haunt me.

After going through a lot of logistical details for planning the funeral; locations, flowers, cremation, clothing and many other things, we had to pick out an urn.  We'd decided to have Hope cremated.  The idea of her body rotting in the ground was more disturbing than the idea of cremation for me.  We hope to take Hope to some of our favourite places, places we were never able to show her during her life.  They asked what we wanted the urn to say and the first thing that came to my mind was a quote by Francis of Assisi- "Preach the gospel at all times, and when necessary, use words".  We felt that it summed up the life of a 13 month old that never spoke, but truly made a difference in the kingdom of God.

That night we talked with family about what to do for her service.  I remember a funeral I went to in 2002 for a young Godly man that was taken too soon.  I remember seeing his wife worship Jesus and wondering how she had the strength to even sing.  I wasn't sure I'd be able to get a word out, but I really felt that I wanted to try.  God is still good and I wanted Him to know that I still loved Him, even though he took away someone I loved more than anything.  We talked about speakers, programs and the multitude of details that go into planning a service like this.  It was overwhelming to put something together so quickly.  I can honestly say that I had very little to do with it.  It was almost completely done by others and would not have come together without all of the help we received.

I also took that terrible trip to the mall, a trip to pick out clothes for my own child's funeral.  I wasn't sure how I would do, but managed to find some clothes and avoid a complete breakdown.  It was one of the first shopping trips that never involved glancing at price tags or checking the sale section first.  I needed an outfit, I wanted to find something quickly and I didn't care what it cost, I just wanted to go home.

Friday was a difficult day.  We woke up with anxiety about seeing Hope.  I wanted so badly to set eyes on her again, but feared I'd be disappointed with what I saw.  We had held her for hours after she'd died, but she was only dead for a short time.  I worried that she would look disgusting to me when I saw her in a casket and that I wouldn't be able to look at her.  I worried that standing there next to her as each person we'd invited came by would drain me and I'd completely collapse from exhaustion.  When we finally got into the car I felt like it took hours to get there.  We impatiently asked the funeral director to hurry up and bring her to us as he set things up.  As soon as they opened her casket, Shawn and I stepped forward and sobbed as we looked down at such a beautiful angel.  She still looked just like our Hope and I wanted so desperately to pick her up.  I could not get over the beauty I saw, even in a dead body.  In many ways she was more beautiful in that moment than I'd ever seen her.  I pulled a rose from the flowers on top of the casket and placed it in her tiny, lifeless hand.

We cried with many friends that night and introduced Hope to some for the very first time.  I thought I would never leave her.  Sadie reached her breaking point by 9:30 pm, as she was 2.5 hours past her bedtime and was begging us to take her home.  Shawn and I tucked Hope in and closed the lid of her casket.  We didn't like to the idea of someone else doing it for us.  I left with the dread in my heart that the next day would be the last day of my life that I would lay eyes on my baby girl.

Saturday was not easy.  I got ready for my own child's funeral, an absolutely horrible feeling.  We drove to the church with a happy Sadie in the backseat without a clue of what was ahead.  We walked into the room where Hope had been placed and Shawn and I opened her casket.  For the next hour, I never left her side.  I knew that others needed to say goodbye and that people wanted to see her, but I thought of no one other than myself at that time.  I wanted to look at her and I couldn't imagine walking away from her in that moment.  I looked at my watch multiple times with the dread of needing to say goodbye.  Just before 1 pm I saw the funeral home staff looming near me.  I looked up and they told me it was time.  Shawn and I wept over our baby girl as he tucked her in for the last time ever.  A gift that most parents have nightly for years with their children.  Something that had been stollen from us much too early.

We walked down the aisle of the church behind Hope's casket.  Something amazing happened as we walked through the crowd that had gathered to celebrate her life.   We found some strength in the Lord and in our community.  I had thought I would need a massive box of kleenex to survive that service, but I only used one.  We found the strength to stand and celebrate our daughter's life.  We do not deny that the pain is terrible and completely raw, but we acknowledge that God is good and we believe in His perfect will.

When planning her service, we had asked to have the message of Christ shared.  The only value we can see in Hope's death is salvation.  If someone hears about and believes in Jesus as a result of Hope's life and death, it is all worth it.  To anyone that heard the message of Christ for the first time or the 50th time that felt that pull in your chest.  We pray that you put your trust in Christ and believe in Him as your personal Saviour.  The only comfort we find is knowing that we will spend eternity in Heaven with Hope.  We pray that many join us in eternity because of the testimony that Hope's journey has been in your life.  If you do, would you tell Shawn and I?  We would be so encouraged to know that someone accepted Jesus for the first time and is now alive in Christ.

It is now 6 days since that horrible night in Edmonton that we held our lifeless daughter.  Many people have asked how we are doing.  That's a difficult question with a constantly changing answer.  We have moments of joy; watching Sadie laugh and play with her cousins, but we have moments of deep pain as well.  We are not sleeping well and avoid going to bed.  We struggle to imagine returning to normal life and are trying to even grasp what that looks like for us.  It's been so long since our life was "normal" that we do not even know where to begin.

We feel we need to get out of Calgary and Shawn is not ready to go back to work.  We want to be somewhere we feel comfortable and have made a few plans.  We will spend some time with my family in Radium for a few days, thanks to the kindness of some wonderful people.  After that, Shawn and I will be leaving with Sadie next week to go to Maui for a week.  We have friends that are away and have offered us their home and their vehicle.  The flights were very reasonable and we felt it was the best place for us right now.  We still plan to get away on an exciting vacation when our heads are clear enough to plan it, but for now are happy to go away.

I have been asked multiple times if I will continue to blog.  I don't have a true answer, but as I feel like writing, I will.  I'm not sure for how long, I assume that one day I'll be ready to finish this story and put an end to Mending Hearts and Bending Knees.  When that will be, I have no idea.  Please continue to pray for our family.  I think we are most afraid of how we'll feel when the flowers stop arriving, the meals no longer come and we are left alone.  I believe that is when the true pain will set in and we have no way of preparing for those days.  In those moments, we pray that God continues to give us the strength we need.

Friday, 24 May 2013

Hope's Funeral to be Streamed Live....

Some amazing people have worked very hard and have been successful at arranging for Hope's funeral to be streamed live tomorrow. At 1:00 p.m. Calgary, Alberta time (or 3:00 p.m. Eastern standard time), you can go to the following link and share in the celebration of Hope's life with us.

We are so thankful that so many of you, who have supported and prayed for our sweet Hope, will be able to join from afar and be a part of this day with us.

Thursday, 23 May 2013

Funeral Arrangements for Little Miss Hope

Hope's funeral service will be held on Saturday, May 25th, at Foothills Alliance Church in Calgary, Alberta, (333 Edgepark Blvd NW) at 1:00 p.m.  There will be a private visitation on Friday night at 7 p.m.

In lieu of flowers, donations to would be gratefully appreciated. Thank you.

We are working on having the funeral service streamed live on the internet but we're not sure, at this point, if it's possible.

We would be honoured by your attendance at Hope's funeral as we remember her short but impactful life.  She has changed our world and we know that many of you feel the same.

Thank you for keeping Shawn and Amy and Sadie and the rest of their families in your prayers during these extremely heartbreaking days.

Wednesday, 22 May 2013

From Amy's friend......

Hi friends,

A few months back Amy shared a wish with our small group. She said that it would be amazing to know the impact that Hope's life and story has had. She said she knew that she would likely not know the full impact of her life until they were in Heaven together. I think it would be amazing to give Amy a small glimpse right now.

If you have a story to share about the way that Hope has touched your life, your relationship with God/Jesus or how cuddling sweet Hope in the hospital has impacted you please share it with us and I will compile it in a book for Amy and Shawn.

Do you have a picture of Hope that Amy hasn't seen or was lost on her FB wall? It would be great to get those together with your story. These stories don't have to be big to share, Hope has touched us in big and small ways. Maybe her fight has brought you back to your knees for the first time in a long time, maybe you are a prayer warrior and you supported the family that way regularly. Encouragement is a wonderful and tangible way to support this family.

The deadline to submit is May 31st.

This is not a place to give advice! As the editor of this book I reserve the right to not include things that are not encouraging or life giving.

This book will be digital and then printed out so please send your stories and photos to this email address:

One last thing, would you share this event with anyone who has been impacted by Hope or has been reading the blog?  If you have questions direct them my way. Thanks!

Hope's Perfect Heart

Yesterday evening, Hope finally received her perfect heart.  She fought hard and waited patiently for God to provide a new heart for her here on earth, but last night He chose to take her home to Heaven instead.  It happened quickly and was not only shocking, but truly heartbreaking for our family.

On Tuesday morning I arrived at the hospital and found that Hope was more lethargic than the day before.  She did not look well and was fighting to stay awake.  She threw up a little and had some diarrhea as well as poor colour and no energy.

The doctors decided to draw some bloodwork and the initial screen showed that her inflammatory markers were sky high, likely the sign of an infection.  As soon as she spiked a fever, antibiotics were started which required a new IV and an echo of her heart was ordered.  The culprit was thought to be a line infection, something we have battled with Hope many times.

In the afternoon they made the decision to send Hope to Edmonton.  Her heart was weak and this infection would make it more difficult for her to fight.  They felt she would be safer in Edmonton.  Shawn and I talked on the phone and he felt that it would be best for me to go up with Hope and he would follow me on Friday with Sadie.  We've done this so many times and assumed that this trip would be long and it was best for him to stay behind to work as much as possible.

The doctors decided that with Hope being lethargic, it was safer to transport her intubated.  I was not prepared to watch them do this alone and called Shawn to come right away.  He arrived shortly after the tube was in and was able to sit with me.  We left the hospital at 4:15 pm to get home so I could grab some clothes before leaving for Edmonton.  A friend had agreed to drive up with me so I wouldn't be alone.

There was terrible traffic leaving the hospital and it took 45 minutes to get home.  I started to get very impatient and almost crashed our car at one point in my rush.  Shawn asked me to calm down and I disrespectfully refused.  I felt a strong sense that I needed to hurry but could not explain it.  Once I was home I had everything packed and ready to go within 30 minutes and was on the road.

Upon entering Edmonton outskirts, the doctor in Edmonton called to ask where I was. I told him and he told me that I needed to speed up and get to the hospital immediately.  He told me that Hope had turned a bad corner and was fading quickly, they weren't sure if I was going to make it there in time.  I called Shawn in hysterics to hurry to the hospital.  I was so hysterical he asked to speak with Katie as he could not understand what I was saying.  I raced to the hospital and left Katie and our car at the front door as I ran through the hospital.  As soon as the elevator doors opened to take me up, the doctor called again to tell me to hurry.  I ran down the third floor hallway to PICU and found the doctor waiting at the door for me.  He told me they'd been doing chest compressions on Hope for 13 minutes and had lost her, but her pulse had come back very weakly.

I stood next to my little girl all alone, with a room full of doctors, as they told me there was nothing more they could do.  I screamed 'No' over and over as I stroked her face and lay my hand on her tummy that continued to go up and down with every breath.  I called Shawn again and told him we were losing her and that he wouldn't make it.  He asked me to kiss her.  The surgeon came to see me and told me that he would take her to try ECMO (life support), but it would take 2 hours to even attempt to connect her because of the clot in her neck and he was positive she didn't have two hours.  They began giving her shots of adrenaline every 30 seconds to keep her alive. Finally they told me that she had come back long enough to see me, but was now only alive because of the adrenaline.  They stopped giving it to her and told me that slowly her heart would stop beating.

They agreed to let me hold her and moved a couch into her room and took out the bed.  I asked them to bring in my friends; Graeme, Carissa and Katie from the waiting room.  I sat with them and cried and held my girl as her heart rate slowly dropped for the next hour.  At 9:30 they came in and removed the breathing tube because her heart was nearly still.  At 9:45 the doctor came in with the stethoscope and told me she was gone completely.  I held her just the same and knew that I would not give her up before her Daddy got to hold her one last time.

Shawn and James arrived at 10:30, shortly after my mom arrived from the airport as well.  They were all able to hold her and say goodbye one last time.  The staff came and took plaster casts of her hands and feet for us.  We made foot and hand prints and were able to bathe her ourselves and wrap her in a new blanket.  We held her in that cold room until midnight when a security guard came and walked Shawn and I down to the morgue with our nurse.  At the door of the morgue, Shawn handed our baby girl's body over for the last time.  We knew that she was already with Jesus and although her body would spend the night without anyone there, her soul was with so many in Heaven.

It was late, but I couldn't bear the thought of waking up in Edmonton to this sick reality.  We made the drive home and crawled into bed around 3:30 am this morning.  I thought I would sleep forever and avoid this nightmare that is now our lives.  I woke up less than 3 hours later and soon felt the bed shaking from Shawn's tears as he thought about telling Sadie today that her sister is gone forever.  How do we explain something so difficult to a child so innocent and loving?

We are shattered and broken.  Her life was full of purpose and God used her to reach so many.  Her fight simply seems so unfair when she would never get a chance to run, talk or laugh with her sister here on this earth.  This journey is now beginning again for us, a journey of grief.  Today I will have to call a funeral home and plan a funeral for our child, a task no parent should ever have to do.  Today the reality will set in more deeply as the shock fades.

We believe that God is good, even when he doesn't give us what we wanted.  We believe that He is loving, even when He takes those that we love.  We know that we will spend eternity with Hope and that she no longer has scars, clots or damaged organs.  We know that she will never be poked again and that she is running free.  Yesterday we got our freedom back as well, freedom from this suffocating journey and all we want is to be trapped and have that freedom removed again.  Please pray for our family.

Monday, 20 May 2013

Broken Hearts Made Whole

Tomorrow at 9:30am Ontario time, my mom will be sharing on television about Hope's story.  It's on CTS here, not sure what channel that will be for each of you, but it's 51 at our house.  I believe it will air at 9:30am here as well, but I'm recording all morning just in case.  I'm looking forward to watching it when I get home from the hospital.  Please join me in praying that her story not only draws people closer to the Lord and gets them on their knees, but that it raises awareness for organ donation and that it floods the gates of Heaven with prayers for a heart for Hope.

Today was a day I have been dreading.  It was the first day of training for the run with Heart Beats in October.  The last time I ran, was for the run last October!  Seven months later, I've begun to run again to work towards my goal of running the entire 5 km without needing to walk.  As we get closer, I'll post a link for anyone that would like to sponsor a runner on our team.  If you're interested in running, let me know and I can send you the info to sign up for the 5 or 10 km run or the walks.  My faithful running buddy arrived this morning and I dragged myself outside.  It was honestly not as horrible as I had anticipated.  The last 10 minutes were much harder than the first, but I have survived and I'm truly looking forward to the exercise and the time it gives me to chat with friends as we run.  Last year we ran as team Hope Holly Lincoln.  We plan to have the same name this year and run for the 3 babies that started this journey together.  I was thinking our team t-shirts should say, "Running for broken hearts made whole" or something to that effect.  We know that Lincoln's broken heart was made whole in Heaven.  Holly's 1/2 heart was made whole when she received her transplant last August, and we await that day that Hope's 1/2 heart will become a whole.  We pray that is here on earth, but know that Jesus will give her a perfect heart in Heaven, even if not here on earth.

I had an amazing afternoon cuddling Hope and looking into her beautiful face.  I was struck by how amazing our God is today.  Hope was created with only 1/2 her heart, but there were also people created with incredible brains that found ways to surgically keep a child with 1/2 a heart alive.  That absolutely amazed me today.  I looked down at my precious girl and imagined a heart 1/2 the size it's supposed to be and yet working overtime to keep her organs running and her body alive.  It's simply a miracle and absolutely incredible to witness.  Every heart beat is a miracle and I choose to celebrate each one.

Hope was getting a bit warmer as the day progressed and I'm worried she may develop a fever overnight.  Shawn noticed that her heart rate was a bit higher as we headed out for the day and we are hoping it's nothing.  Please join us in praying against infection.  Our cardiologist is wonderful and told me this morning that he overruled the decision to lower Hope's heart meds at this point.  They may consider it in a few days, but he felt she still needed the higher dose and I couldn't agree more.

My mom arrives tomorrow night, she flies out after her interview.  Over the next week my entire family will slowly arrive in Calgary.  We had hoped to go on a family vacation this year, it's the only time we're all together.  With Hope's serious condition, it was clearly not an option and they've all chosen to come here so we can be together.  I keep telling Shawn that once they all arrive, both our entire families will be in the same city.  Could there be a more perfect time to receive the call that a heart was found for Hope?  Last night I had a dream that the call came when our house was full of people.  I could only make out the face of one friend, but perhaps the rest were family.  I was amazed that as I grabbed my things to rush to Edmonton in my dream, I felt total and complete peace.  Lord, give us your peace until you give Hope a heart that is no longer broken.

Sunday, 19 May 2013

Previously Loved?

This weekend has truly been a weekend in many ways.  With the help of others, we've been able to avoid crazy early mornings, spend quality time with Sadie, go to church this morning and run errands with the rest of the world on the weekend.  We accomplished a fair amount and feel slightly less burnt out than we have been feeling.

Hope is still tolerating the pure breast milk and has not thrown up for probably 48 hours.  As a result, the doctors have decided to try lowering her heart meds over the next couple of days to get her back to 5 mg instead of 7.5 mg.  I personally feel this is a waste of time and that we'll need to go back up on the meds as soon as they try to concentrate her feeds.  The meds are not good for Hope long term, so I'm trying to be optimistic and believe that this is possible.  We all know that I'm fairly sure it will fail and she'll be back up to her current dose by next weekend.  Please pray that I'm wrong.

Our house is starting to feel more like our home and Sadie's room is finally dark enough to keep her sleeping in the mornings.  Things are finding their new places around the house and all of the boxes have officially been unpacked.  We lose possession of our old house on Friday and need to figure out a way to remove a few of the things left there before then.

I was sitting in our living room this afternoon looking around at all the "stuff" we have in life.  It's amazing how when you want your child to have life, nothing else seems that great.  I still think it looks better when we have curtains up, or after the couch arrived, and I certainly notice when the boxes are off the floor.  It's more that as I sit in the room that I worked to create, I realize that I'd give up everything and anything to have Hope in my life.  I would give my house, our car and every penny we have in the bank to the donor family if that's what it took.  In a lot of ways it's more difficult to wait for the Lord's provision.  Yes, he is going to bring us a heart without taking everything we have, but he's going to do that in HIS timing and not mine.

Hope has been more cuddly lately and is now willing to sleep in your arms as you hold her.  This is something I deeply enjoy, but also worry about.  She appears weaker and more fragile to me.  Perhaps that is her tiny body.  I long for the day that she crawls around our home and gets into everything she shouldn't.  I look forward to the frustration of her running around when I want her to sit still.  We just want our girl to receive a new heart and get stronger.

I often struggle with the term 'new heart' as the heart is not new.  I feel it would be more fitting to call it; 'previously loved' or 'gently used'.  The only new heart you have is the one you are born with or the one you receive after accepting Jesus as your Saviour.  I also feel like saying, 'new heart' takes away from the donor family who 'used' that heart before Hope.  One day it will come to me and I'll find the term I'm looking for to express how I see a heart that is gifted to our girl.  We continue to pray that a family is able to make that most difficult choice and sacrifice to save our little girl's life.

Friday, 17 May 2013

Wedding Words

There are benefits to being overwhelmed.  I am extremely productive once I hit complete burn out.  In an effort to stop thinking about Hope and the wait for a heart, I do everything and anything else.  Sometimes that simply involves watching Shawn do the things I need done around the house.  Tonight we were able to get a few of the curtains hung and a few more things on the walls as well.  That always feels good and relieves some of the underlying stress.  I could have continued watching him work all night long, but eventually he told me he was done for the night.

Today Hope continued to throw up, but was stable enough to stay in Calgary.  They've decided that although Hope is walking a thin line, they'll try to work out some of the issues this weekend and see if we can stay in Calgary a little longer.  Hope is now on 7.5 mg of her heart meds, the max dose is 20.  With the vomiting continuing, they'll likely need to go up again but we do not want to get anywhere close to 20 until we know a heart is around the corner because there's no where to go from there.

It was nice to spend the night at home as a family tonight.  Sadie was happy to have us both here and even sat down and watched a bit of our wedding video with us.  It was the first time we've watched it since we were married 5 years ago.  It was a good reminder to hear my brother's words to us at the wedding (he married us).  At one point he said, "you need to be ready for difficult times and trials when they come, and they will come."  Thank you Ryan, they did come and your words were a blessing the second time around too.

Hope is on pure breast milk now and is certainly not getting enough calories.  Please pray we can find a solution that will work here in Calgary and do not need to head to Edmonton just yet.  We are praying that our next drive to Edmonton is for a new heart.

Thursday, 16 May 2013

Extreme Highs and Lows

The last 24 hours has been one of the most intense roller coaster of emotions we've experienced yet.   I am typing this as quickly as possible as my migraine is not enjoying the computer screen.  There is simply too much going on to not update and have you all praying more specifically.

It started early this morning just after midnight.  Shawn and I were asleep in bed, had not been asleep for long but had finally managed to fall asleep.  Our home phone rang and Shawn managed to get there before I could.  I ran next to him saying, "Oh my goodness!" over and over.  He handed me the phone and I anxiously answered, hoping we were getting a heart.  Unfortunately it was the Calgary hospital calling with bad news.  Hope had been vomiting blood and they would be holding her feeds for the night.

This morning I arrived exhausted.  Although I had a shower, I heard more today about how tired I looked than I normally do.  I simply did not sleep well after the discouraging news and the extreme high of thinking we were getting a heart, to the low of realizing there was no heart and Hope was getting worse.

Hope was extremely sleepy all day today and less grumpy, but not herself.  Her feeds were re-started and after only a couple of hours, the vomiting returned.  The blood has not increased so we don't know what that is from at this point as it wasn't severe enough to warrant a great deal of testing.  Her feeds were rested for a while and restarted.  The vomiting returned and Hope was not happy.  The feeds are coming back undigested and clearly not tolerated.

This evening just before 7pm the hospital called once again.  Hope continues to not tolerate her feeds and they needed to make a decision on what to do.  This morning Hope weighed in at only 12 pounds. That does not leave her a great deal of weight to lose and we need to guard every gram on her body.  The doctors did not feel that putting her on IV fluids through the night was safe with her being so skinny.  They decided instead to up her heart meds.  That doesn't sound like a big deal, but you can only go so high on them and they reserve this tactic as a last option.  Hope's dose was increased by 50% of her previous dose.  If this works, we have more time.  If this is not effective, Edmonton will be contacted in the morning and there is a good chance we'll be heading to Edmonton for the Berlin heart. This is obviously devasting news and signals the end of our battle with Hope.  If Hope does not get a heart quickly, there is nothing more they can do.  Although the Berlin heart may give us more time, it is also extremely dangerous with Hope's clotting tendency and how tiny she is.

Just before 10 tonight I found out that one of Hope's heart friends is getting a new heart tomorrow morning.  You would think I would feel jealous and frustrated.  I actually feel slightly encouraged.  I have felt all along that until Caleb got a heart, Hope would not receive one.  It is more complicated to match hearts than simply the number of people on the list, but I always felt he would get a heart first.  Knowing that his heart has arrived, I feel like Hope's heart will not be as far away as I had thought it would be.

We need a miracle.  We could truly use a heart by morning if possible.  I know that God is in control and is watching over our family.  I pray that his plan is for Hope to have a new heart before she needs a Berlin heart.  Please join us in praying for a miracle.  We are also praying for a heart for Curtis, pray for him as you think of Hope.  He's much older than her and needs a bigger heart, but is in great need as well.  Pray for the parents of North America.  I read an article this week that talked of the lack of organ donors and how the problem is getting worse and not better.  I pray that Hope's story not only raises awareness for her, but for everyone that will need an organ in the years to come.

Wednesday, 15 May 2013

A New Tooth

This week I have been reminded of how sick and twisted this sinful world is.  Many of you have likely heard of and been following the disappearance and murder of Tim Bosma.  I have finally understood how people that do not know us well, could care so deeply for our family.  Each morning I would look for updates on my cell phone, often before getting out of bed.  I have prayed throughout the day, constantly for this family.  Our world is sinful and fallen, we will never live in a world that is truly safe until we reach Heaven.

Hope has been decently stable.  Yesterday I saw for the first time how dependent she's become on her heart meds.  She needed a large volume of blood drawn for some transplant blood work and they decided it wouldn't be easy to get off her body.  In an effort to save her from being poked multiple times, they agreed to take it off her line.  Something that would never have happened if the doctor from Edmonton wasn't here for the week.  The heart med is only effective while it's running and disappears from the body in seconds.  It was stopped for a total of 90 seconds at most.  In that short time, Hope's heart rate went extremely high, her oxygen levels dropped and she began breathing very quickly.  Lord, her little heart is fighting to keep going, but she needs a new one.

Hope was beyond miserable today.  She woke up for the day at 5am and could not fall asleep for a decent nap.  Assuming she was teething, I kept looking at her red gums on the bottom and looked for new teeth.  After hours, I finally realized a tooth had broken through on the top.  Hope has finally gotten another tooth, her third, after 5 long months with no new teeth.  I'm thankful it's a normal problem for once and not a major issue.

Thank you for continuing to pray for us all.

Monday, 13 May 2013

A Shorter Wait?

I had planned to write yesterday but was honestly struggling through the day and felt that my emotions were too all over the map to put into words.  I cried myself to sleep on Saturday and could not figure out why I had so much emotion.  I finally realized that Mother's Day weekend was pushing me over the edge.  I kept hearing people talk about all the fun things they were going to do as a family and cute things the kids would do with Daddy for their Mom.  Eventually it got to me and I felt sad knowing that we would celebrate those morning moments without Hope.

On Sunday morning I got up and went into Sadie's room.  The first thing she said to was, "I want Baby Hope to come home Mommy."  It was a sweet thing to hear her say, but not what I needed in a deeply emotional moment.  All day I fought off the tears when someone asked how I was doing or gave me a hug.  It was tough.

I managed to pull myself together in the evening, once again realizing that crying about my life doesn't change it.  Shawn and I had a nice evening together and I tried to not think about the pain and focus on the joy I feel when I'm with the girls.

This morning I started another week with Hope.  I was feeling pretty tired before we even began the week.  I happened to notice the board that lists the doctors on service in the ICU.  One of our favourite ICU doctors from Edmonton is down helping out in Calgary for the week.  I was thrilled to know that I'd be working with him this week and that he'd have a good understanding of where Hope has been.  He told me today that he's never seen her looking so well before.  That was encouraging!  I also met with our cardiologist and he told me that although Hope has only been on the list for transplant for 2 weeks, she has the most common blood type.  She can take a heart from any blood type and typically children with her blood type do not wait as long as others.  I sure hope he's right!

I came home to a letter from the Stollery letting us know that Hope was given TPN (liquid nutrients) in Edmonton that they later discovered had been mixed incorrectly in the pharmacy.  Obviously she did alright through it, but it just reminds me that there are a lot of risks to hospital life and we need to get Hope home and living in a more normal environment as soon as we can!

I've had to eat my pride today and accept a friend's invitation to bring food and another friend's kindness to come and help clean some of the dirt and dust that covers our new home.  I want to do these things, I'm even good at them, but I'm simply not getting to them and it's not getting done.  This has been done for us in the past, I just feel that after 13 months our friends deserve a break too!  I am thankful again tonight that we are not alone.  We have God, which is our strength and he is our hope.  We are also extremely blessed by our friends and all those that stand with us and sacrifice their own time to keep our family going.  I do hope that one day I can return the kindness to others!

Saturday, 11 May 2013

A Weary Mother

Some days I feel the strength of a lion, or Jesus in me.  Other days I feel like I'm weak and not able to carry on.  Today was a tough day.  This morning, for the millionth time, we had to all get up early in order to drive Shawn to the hospital.  We are a one car family and have been all along.  It works perfectly for our family because of where we live.  Shawn rides his bike to work and in the evenings, we go out as a family or one of us stays home with the kids anyway.  This still works during the week for us, but the weekends are now a dreaded thing in our home.  If I want to accomplish anything, or give Shawn a break later in the day, we have to get Sadie up early and go to the hospital in the morning to drop Shawn off.

This weekend was especially bad as Shawn needed to do a lot of "man" work on the old house.  We still had things in the garage that needed to be thrown away, taken to the dump or moved.  Shawn was going to spend the morning at the hospital and I was going to take over at noon, with Sadie.  Sadie does well at the hospital for a time, but 5 hours is sure pushing it.  Thankfully my Mother in law rescued me and came to help me with the two girls at the hospital.  Sadie was then taken with some friends to a BBQ with lots of kids that she's been begging us to go play with.

When I was a true stay at home mom, I used to get together with friends all the time.  Now that I'm at the hospital all day and Sadie is with Melanie, her nanny, we hardly get together for play dates.  This is difficult on me as I miss those times with my friends, but it's also hard on Sadie as well.  On Friday I sat and cried after thinking about the beautiful weather and playing at the park with Sadie.  Instead I sat in a room all day with a baby that slept for half of my time there, but will randomly wake and be upset if I'm gone.

Shawn and I are burnt out.  As we pulled up to the hospital this morning he asked me if I was okay and I burst into tears.  I am so frustrated.  I just want Hope to come home and now it could literally be months or even years before that's possible.  I know that I'll pull myself together for my family, but I'm terrified of continuing this journey for the entire summer and perhaps into next year.

One of the ICU doctors convinced the nurses to transfer Hope's pile of pumps, tubes and wires into her stroller.  They then allowed us to walk around outside with her for a few minutes, with them of course! It wasn't a long walk, but was wonderful to get Hope outside and a much needed distraction from another day at the hospital.

As this journey continues and has no end in sight, I find we spend less hours at the hospital.  I used to be shocked when I would see children alone, now I understand.  We still don't like Hope to be alone and only leave when she has a volunteer or friend with her, but we do leave.  At first we left at dinner time, then overnight and now we've realized how burnt out we are and have started looking for people to sit with her on Saturday and Sunday mornings so we can actually look forward to a lower stress weekend and some quality time with Sadie.  I feel guilty at times, but then I have to remind myself that we are protecting our family by keeping ourselves from completely breaking down.  If this was short term we could stop our lives, but it's not.  Eventually I have to start grocery shopping, paying bills and taking care of our family again.

Hope is back on oxygen full time now.  She was needing it more and is currently relying on it.  She continues to have diarrhea at night and threw up in the night last night.  By the pile of laundry I found today, I'm guessing she threw up a lot.  She was off feeds until we got in this morning and appears to be alright now.  The doctors did find a way to put her diuretics through the PICC line with the heart meds!  That will help with Hope's breathing as they are much more effective.  At the same time, the diuretics are slowly destroying her kidneys in the process.  We need a heart and we need it sooner rather than later.

I enter my second Mother's Day with Hope and my third with Sadie, completely exhausted.  I love my kids and I will fight for them no matter what, but I long for the day that Shawn and I can leave them with people we trust and go on a much needed vacation.  We're praying that is possible before 2020!  We know that our families are tired as well, we have relied on them a lot over the last 13 months.  God, would you bless our family with a heart soon?  Would you give the family that is going to lose their child, the strength to donate their organs?  Would you give us hope to cling to until that happens?

Thursday, 9 May 2013

IV Marathon

Hope's IV finally went after what I believe was 13 days.  She has now been on oral diuretics for last 24 hours as a result.  The grunting has returned and we're hopeful that she'll be able to adapt on her own and not need a new IV.  Hope had diarrhea last night, but only once today for me.  They changed the concentration of her feed in the morning, that could have been the solution.  Hopefully her tummy will settle out and we won't have to lower her calorie count anymore.  That little lady needs to get a lot bigger, it's better for her health.  It also opens up our options for Hope.  She needs to get bigger in order to receive certain heart interventions.  She's still so skinny, I can feel her entire spine when I pick her up.

Hope was screaming when I walked in this morning, I could hear her down the hall.  She stopped as soon as I picked her up and I felt badly that she was so upset.  The nurses tell me each morning that Hope is miserable until I arrive.  I wish I could be there at 6:30 when she wakes up, but then I would miss out on sleep, and my morning with Sadie.  There is just no easy answer.  When Hope was on the ward, we had someone stay overnight with her.  In the PICU there is no bed for someone to stay.  We could have them bring in a pull out couch, but it's not an ideal sleeping environment and we feel badly asking someone to stay.

Hope had to have blood taken from a heel poke today.  That is how they run a blood gas.  Hope is poked with a needle like a diabetic would be, but they squeeze the blood out and into a tube.  Hope screamed so hard, that she slept for over 3 hours after it was over.  I can tell that her body is so weak and it discourages me.  Physio is difficult as I feel badly torturing a child who's life is already so tough. I know that the end result is worth it, but right now it feels mean.

I have only 5 boxes left unpacked.  Mostly of things I don't want or need to unpack in the garage once we get around to building some shelves.  I made a list this morning of handy man things I need Shawn to do.  I'm trying to pace myself in bugging him about it all as he works all day and isn't thrilled to work all night afterwards.  Fair enough!  We have the things we need; beds, towels, kitchen stuff and places to sit.  We may take a while to hang things on our walls, but that happens often when people move!

Continuing to wait for a heart.  Please continue to pray.

Tuesday, 7 May 2013

Power Down

Writing updates can be stressful some days.  Currently in life it is a huge burden.  I want to update and give people specifics to pray for and I want to make sure people don't forget about Hope.  At the same time, I don't often find the time until midnight and I'm getting 6 hours or less of sleep a night and I'm exhausted.  I'm not sure how to remedy that until we finish unpacking or Hope gets out of the hospital!

Hope is still decently stable.  Her respiration rate is high (she's breathing quickly) and the doctors are hoping this is not the start of an infection.  Please pray against infection in her body as she'd need to be taken off the transplant list until it cleared.  Today they increased the oil that is being added to Hope's feeds and she appears to be tolerating it.  She is almost at her calorie goal and we're hoping she'll start to gain weight.  This morning Hope weighed in at only 13 pounds.  She has continued to lose weight as we've been in hospital and is lighter than she was at admission, 9 months ago.

Tomorrow the doctors will increase the iron supplement that Hope is receiving and we're hoping her stomach will continue to tolerate it.  She needs the extra iron and she's done very well with it so far.  Hope's fluid balance continues to be a problem.  I think she is extremely dehydrated just by knowing what she normally looks like.  According to the amount of fluid that goes in and comes out, she's retaining a lot of fluid.  I asked the doctors to come down on her diuretics today as Hope is so thirsty and I don't care what the numbers show, Hope's body looks dry to me and she's not happy like that.  Hopefully she balanced out and will be more comfortable by morning.

Tonight we went over to the old house to sell an old hutch we had in the garage to a stranger from kijiji.  On the way out we ran into our old neighbours from across the street.  We don't know them well and they asked us what we were doing and if we'd moved and such.  We got on to talking about Hope and they told us that they have a grandchild going for heart surgery in Edmonton sometime soon as well.  The husband commented on the fact that our community has been amazing rallying around us.  He said they have noticed all the people coming by to drop things off, chip in with yard work or the many faces picking up Sadie.  I was touched to know that even without words, God was showing this man the importance of community.  It reminded me once again of how much we need those around us and how that is the only way we've made it through this last 13 months with Hope.

Rachelle is heading back to Ontario tomorrow morning and we're very sad to lose her.  It's been incredible to have an extra set of hands around here.  Shawn and I could not have done as much as we have without her help.  We keep joking that we're going to turn off the power tonight to make sure her phone doesn't wake her up in the morning!

I'm personally struggling right now with the idea of waiting for a heart.  I've mentioned before that I'm not the most patient woman.  I think waiting to find out if you child will receive a potential future, or die waiting is one of the most painful things to maintain your patience through.  We know that Hope needs to get a heart quickly, and yet I look at some of the other children waiting and wonder how long it will take to get a heart.  I hope it will be soon, but I have a feeling we're in for the long haul.  I'm not sure how much longer we can carry on without a complete burn out.  Shawn and I are extremely sleep deprived and our bodies are slowly shutting down.  Please pray for strength and for joy in the midst of these struggles.

Saturday, 4 May 2013

Holmes on Homes

Moving is stressful in the most normal circumstances.  I will admit that I am quite stressed and find my patience level to be extremely low, but I think we're doing fairly well with all things considered.  I have the motivation of knowing that we could be called to Edmonton at any moment.  I think about what I want to come home to and it pushes me to do as much as I possibly can.  I would guess that there are only 10% of the boxes left unpacked.  Many of them are boxes of things we likely should have thrown out to begin with.

On Thursday I wasn't able to see Hope at all.  On Friday I was losing my mind by the afternoon and went over to have a quick snuggle to get me through the evening of unpacking.  This morning I woke up early and got over to the hospital as quickly as I could.  I was only going to be there until noon and I wanted as much time as possible.  I want to be finished with everything so I can get back to seeing more of my girl!  Hope was excited to cuddle and quickly settled to sleep in my arms.  We spent the morning together and I got a lot of smiles out of her.  She received a blood transfusion yesterday and it appears to be helping her feel a lot better.

Hope was started on some oral iron supplements yesterday.  These can be extremely tough on the stomach and we are hopeful that Hope's body will not fight against the added iron.  Please pray that they are able to continue giving this to Hope as she really needs it.  Tomorrow Hope will spend the morning with Shawn.  She absolutely lights up when he's around and smiles more for him than anyone else.  I'm going to try to hit 6 different locations to run errands and get to the hospital by 2.  I'm not sure that's possible, but I'm going to give it a valiant effort.

The extra hassles have made this move that much more difficult.  Our brand new washing machine is not working properly.  Samsung is sending someone out, on Tuesday.  We've been going over to the old house to do laundry as we have piles of things and a toddler that sometimes accidentally pees her pants.  You simply cannot live with pee pants in your house for too long!  We bought stools for the island and one of them was damaged in the box.  I'll now have to drive back to the store for an exchange.  Our cable/internet was hooked up on Thursday, did not work, and was re-connected today. The curtain rods I bought do not work, the curtains are too short and we have yet to find a lot of Shawn's tools.  Where is Mike Holmes when you need him?  Shawn is great, but he only has two hands!

Sadie has adjusted well, she seems excited about her new room and is already familiar with all the new locations for her toys.  Shawn and I are both exhausted, aching all over and longing for a vacation.  We deeply pray that Hope gets a heart quickly and that it makes a huge impact on her overall health.  We would love to have her stable, at home and eventually ready to get on a plane.  All dreams we talk about often and continue to long for.  Thank you for praying for our family and for being patient as I've struggled to find the time for updating.

Friday, 3 May 2013

Officially Listed!

Today was moving day!  And that's why it's me, Amy's mom, who is writing this blog!!......

The move has gone well and Amy, Shawn and Sadie are in their new house.  They may be surrounded by boxes, but the beds are made up and they can crawl in bed tonight knowing that the biggest job is done!  Many thanks to their awesome friends who have helped in various ways....packing, unpacking, providing meals, keeping Sadie entertained, cuddling Hope and just being supportive and generous with their time and their love.  What a blessing you have been!

Hope was officially listed for transplant on Wednesday.  And now, the wait begins.  The doctors have told Amy and Shawn that the best chance for Hope would be to get a new heart quickly.  They have talked to them about other options to give her more time, should Hope's heart continue to fail, but because of Hope's complicated anatomy, these options are not ideal for her and some should not even be considered.  For instance, ecmo, the heart/lung assistance machine.  Because of Hope's clot in her neck, the doctors feel that by the time they were able to find a viable vein to use to place the cannula, too much time would have elapsed and Hope would be at risk for brain damage.  The Berlin heart is an option (mechanical heart) but this could also be very risky for Hope due to her tendency to clot.  A clot while on the Berlin heart could result in a stroke for her.  All in all, the ideal scenario would be for Hope to get a new heart as soon as possible.  And so....this is what we are praying for!

Ever since we got the news that Hope would be born with a severe heart defect, people have been praying for her and her family.  Many of you reading this blog right now have been faithfully and earnestly praying throughout this long and difficult journey.  Today, the stats for the blog show that this site has been visited over one million times and people in 65 different countries have read the blog at some point since it was created.  We believe, without a doubt that Hope would not be here today, if not for the army of prayer warriors standing in the gap for her.  She has overcome so much this past year through God's miraculous power!  We give Him ALL the glory for what HE has done in this little girl's life and we humbly ask Him to continue to spare her life and give her the new heart that she so desperately needs.