Friday, 18 November 2011

Our Story Begins...

On November 16th Shawn, Sadie and I headed to the ultrasound clinic for our 18 week ultrasound.  We talked about whether it would be a boy or a girl and threw around some name ideas.  We agreed to have a medical student attend the ultrasound and things got underway.  The technician began looking at the babies profile, limbs and brain.  She continually described things to the student and would show her why our baby was healthy but what the signs of a problem would look like.

The baby was in a tough position so it took a bit of time for the technician to make a guess, she's guessing it's a girl!  A little sister for Sadie to adore.  Sadie began to get a little antsy so Shawn took her out to the waiting room to play.  The technician began to look at the baby's heart and seemed to get quiet.  She had me roll onto my side in an attempt to get a better picture.  She continually looked at the heart, no longer speaking to the student or myself.  I saw her type a question mark onto the screen and something about the left side of the heart.  It was all in short form and I wasn't sure what it meant but was certain a question mark was a bad sign.  I knew the ultrasound shouldn't be taking this long and began watching the clock on the screen.  When we passed the hour mark I began to really worry and wanted Shawn back.

The technician made a joke about me needing to pee and handed me some kleenex to wipe off my belly. She told me she was going to have the doctor to come speak with us and to wait in the room.  I ran to the bathroom and then quickly out to the waiting room.  I asked Shawn to come back in with Sadie and told him I thought there was a problem.  As we began to wait I told him she was looking at the heart and it was taking too long.  He tried to reassure me and told me not to jump to conclusions.  Sadie was going crazy, we hadn't expected such a long appointment and were running out of ways to entertain her.

After what seemed like a long time, a nurse came in and brought some cookies and a sticker for Sadie.  She told us we'd be more comfortable in a room down the hall.  As we walked down the hall to the 'Consult Room' I knew things were about to get worse.  We sat down and I told Shawn again, something was wrong.  We waited for a long time for the doctor to arrive.

The doctor finally arrived, with the medical student.  She looked like she'd lost a bet and was about to enter her worst nightmare.  The doctor sat down and talked to Sadie for a second and then told us he had bad news, it was very serious and going to be tough.  He started out by drawing a heart and apologizing for his artistic abilities.  He then scratched out the entire left side of the heart and proceeded to tell us that our baby was missing the left side of her heart.  He told us that the heart would not grow or develop any further and this was not going to change.  He then began with our options...

1.  Terminate the pregnancy and make the most 'humane' decision for the baby's sake.

2.  Carry the baby to full term, deliver here in Calgary and put the baby in palliative care until, "nature took its course".  He told us it would happen quickly and the baby would not suffer.

3.  Carry the baby to full term and deliver in Edmonton at the heart centre.  He told us the baby would go for immediate open heart surgery and would continue to have another 2 surgeries before her 5th birthday.  He warned us to think about the child we already had, the time we would need to spend away from home and the emotional strain on our family.

He apologized for ruining our lives, told us we had some tough decisions to make, and that a nurse would be following him in with our first appointment at the heart specialist for next week.  Tears were already streaming down my face but I had been staying composed.  As the doctor closed the door I began to weep and stood up to fall into Shawn's arms.  We had nothing to say as we waited for the nurse to arrive.

The nurse apologized for our pain and handed us the details for our first appointment.  We picked up our things and started the long walk out of the office.  As we passed through the waiting room and I saw all the excited moms and dads waiting for the first sight of their babies, I felt jealous.

Here begins a long journey for our family.  We have chosen option 3 without a thought and are awaiting our first appointment on November 23rd.  We feel overwhelmed by the people that need to be updated and decided a blog was our best option.  As we find out details or need to vent, we'll be here.

Right now we are not doing well and have many hours of tears and struggles.  We are thankful for our family and friends, their support has been amazing.  We are fully relying on the Lord for the strength we need each day and believe that he is going to carry us through.  We're not sure why he's chosen us and feel like we're not ready but are willing.

We are asking the world to pray.  Will you join us on our knees as we ask the Lord to heal our baby's broken heart?  We are asking for a whole heart and the faith to believe it can happen.  We need the strength to trust in God's plan whether he heals her heart or has us go through the first surgery.  We need wisdom as we research the best place for the surgery and the logistics to make it happen.  Our God is all powerful and we choose to believe in His power.

22 comments:

  1. Oh, the tears are coming down my face. Ames, I'm so sorry you and Shawn (and Sadie) are going through this. You sound so strong and clear-headed. I'm not sure I would be able to be as remotely sane as you are.
    I keep thinking about the moment my O.B. told me that there might be something wrong with Kai's brain, and how God gave me a peace throughout that pregnancy, that could only have been from Him. I pray the doctors and U/S techs are so dead wrong, but one thing he definitely was wrong about was 'ruining your lives'. This won't ruin your lives. That's not the way our God works. I love you. I'm so glad you're blogging.

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  2. Our family will be praying you all of you.

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  3. I've always admire you and always be. Your faith in the Lord inspires me and many more I'm sure! We pray for you, Shawn, Sadie and her little sister. Thanks for taking the time to blog and keep all of us up to date. Love you.

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  4. Dave and I are praying for you... we cannot imagine what you are going through... Our God is so sovereign and He loves you so much. His heart is breaking for you in this time. Oddly enough, I had a dream last night and you were in it, Amy! The moment I saw you, I gave you a huge hug... I hope you feel it now.

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  5. God will hold you close through this!
    Praying strength for you all ♥ ♥ ♥ ♥

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  6. We'll follow your blog and join in prayer from Louisiana. God makes no mistakes.

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  7. Amy i am so touched by your story and i know that this journey can seem impossible but God and only God's strength will allow you to find moments of peace! Embrace your feelings, know you are loved, and trust that God plans are much more powerful than ours! This story is so close to home with our little Sloane that the tears cannot express the feelings i feel for you and your family as you walk through these next few months and years!

    please know that we are praying for you as a family and desperately plead with God to mend your little ones heart! Your life will change but you will become an amazing beacon of light for the world through your strength and realness! Be sad on days when you need to be sad and smile on the days when your little one is here in your arms! But always embrace the truth of who you are and how this journey feels!

    Many hugs and prayers for you all!
    Jill Donald

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  8. Amy, it's been a while - saw this posted on my sister's facebook. Just to let you know we're praying for you and your family!! this is heart breaking, but He is gracious and compassionate.thoughts and prayers for you!!
    - Amy and Cole

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  9. Amy!!

    I read this blog yesterday afternoon when it was on my homepage, and this morning at church we were singing 'Healer' and the entire time I had you and your precious little baby on my mind!! I am so very sorry to hear about this hardship that you and your family are going through. I work in the NICU at McMaster Children's Hospital and encounter very sad and difficult stories, but it never gets easier. My heart truly breaks for you all!! I just wanted to let you know you are in my prayers and I do believe our Beloved Lord IS a healer and that nothing is impossible for him!!!!

    I believe you're my healer
    I believe you are all I need
    I believe you're my portion
    I believe you're more than enough for me
    Jesus you're all I need!!

    Blessings!!!
    Katie Robinson

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  10. Amy, Shawn & Sadie...

    Thank you for sharing your honest feelings and experiences in this blog. We are deeply encouraged and challenged by your faith & commitment to bringing glory to God in this situation. Your little girl is on our hearts and in our prayers.

    - Julia & Andy Bayer

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  11. Hi Amy,
    Just saw this linked on your Mom's facebook page and we will be praying. Here is a link to another family in Calgary who has also travelled a similar road of heart problems with their little girl. I don't want their story to discourage you, but connecting with them and reading their journey may meet you where you are at in a very real way.

    http://rachelamariah.blogspot.com/

    May God bring you only the strength he can provide, understanding and faith to trust in only him and a miraculous healing to your second little princess.

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  12. You don't know me, nor do I know you but a friend of mine posted a prayer request on her FB wall and thats how I found out about you. I worked at the Edmonton Stollery Children's hospital this past summer, a place I am sure you will be spending much time over the next few years. there is an amazing Child health team there, and they will be a wonderful support for you as well as for your daughter Sadie and your unborn child. I will be praying for you daily as you begin your trek on this journey. It is exciting for me to know that you have God as your guide and I assure you he will be with you through it all. God bless you. I know things are tough but you are not alone.

    " I have loved you with an everlasting love, I have drawn you with loving kindness. I [God] will build you up again and you will be rebuilt. Again you will take up your tambourines and go out and dance with the joyful."

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  13. Hi Amy, I'm Celeste, I'm Christen and Ryan's neighbour. Christen told me a little bit then I found your blog through her FB page.
    I'm also pregnant and I sit here reading your story with tears running down my face. I can only imagine what your going through right now and I feel so grateful that you have such a strong belief in God and his plan. God will carry you through. I am also praying for you and definitely believe in Miracles!
    It was quite a shock to read the Dr.s first 2 options and I know that for me option 3 would be the only option.
    Thank you for sharing. I am praying for you and your family.

    Celeste x

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  14. I Amy, my name is Sarah. I know Ryan and Christen through YWAM. I will be praying for you non-stop. I wanted to send you to my dear friend's blog. They had a baby with heart defects and down syndrome, and God did such amazing things through his 67 days of life. I would like you to glance at it, I believe you will be encouraged by how in control God is, how loving and gracious HE is...and, I don't know. I just think you will be blessed, even in this time of grief and struggle. God does miracles every day. Your baby will be a miracle! Mandy's blog is www.mandypelton.blogspot.com

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  15. Amy... I do not know you but my heart goes out to you and your family. My best friend's first baby was diagnosed with HLHS. They decided to continue the pregnancy, underwent an experimental surgery on the baby (in utero), and delivered at Brigham Womens hospital in Boston, MA. Yes, it has been difficult to say the least. Yes, "L" (the baby) has had countless heart surgeries since birth... BUT he is a bright, amazing, sweet, adorable little man who just started kindergarten this year. If you contact me privately, I will happily give you her (my best friend's) contact information. Having been through the exact same situation, she may offer you a different perspective. ~ missjomama@gmail.com

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  16. Amy, Shawn and Sadie,
    We've never met but I just wanted you guys to know that you are being prayed for daily. Thank you for so openly sharing your story with us and allowing us to be a part of this journey with you. We want you to know that you're not alone in this. I can see God's at work in this already in your sense of peace and your Godly vision.
    I'm going to share your story at my churches next prayer meeting and continue to pray daily and keep checking your blog. There is so much power in prayer. We worship an incredible, almighty, God.

    Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us. - Ephesians 3:20

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  17. Amy
    I hope you will know that others hurt because you are hurting. I am praying for your unborn little girl - she is precious to the heart of God. "...God chose the weak things of the world to shame the strong..." (1 Cor 1) May you have peace and courage for the journey ahead.
    Love Janice

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  18. Amy,

    Our thoughts and prayers are with you and your family.

    Chuck, Stacey & Jacob

    "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, `Move from here to there' and it will move. Nothing will be impossible for you."

    Matthew 17:19-20

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  19. Amy... as my heart breaks for you and your family, God can mend Hope's heart. I hope His love washes all over your family.

    Also, the doctors told my parents during the entire pregnancy with me that I was going to have special needs and may or may not be a "functioning" person. Turns out, I don't and I am!!

    To this day my parents credit the prayers of what felt like the entire world on their side...

    I trust and know that God will work the same in your lives.

    "Take my hand and lead me further up within here
    Deep inside Your heart, With in your soul
    On my knees as I crawl steady up the incline
    The glory of Your face and I can't stand."

    Jacqueline "Pepsi" Boyd

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  20. Greetings. Someone shared your blog with me b/c they know I have a daughter with HLHS. She turned 11 in January. Sounds like you are related to T and J Buhay? They used to attend the same church as my family. We live near Children's Hospital of Phila in Pennsyvania USA. I can tell you that God has used our daughter and her special needs in AMAZING ways for His glory and our benefit...and I believe also the benefit of others. If you ever have any questions, let me know. In His love, Sybrina Knorr knorrfamily@comcast.net

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  21. Hi Amy,
    I stumbled upon your blog last night, and I have decided to read from the start as I pray for you guys and your precious angel. Looks like I will be processing almost a year's worth of blogs in the next few days. Thank you for sharing your journey with the world! Thank you for being vulnerable. My name is Lindsey, and our journey with HLHS started in May of 2009, when we found out during a regular ultrasound that our unborn son (Liam) would be born with HLHS. We are in Ontario. I would love to connect with you (lindsey.j.bleach@gmail.com)
    This journey is the hardest road we've traveled. The hurdles we've had to overcome are at times daily encounters. But in our journey, we have experienced first hand God's mighty hand of protection over Liam ever since then, and we have felt such rich blessings through our precious miracle boy. He will be three at the end of this month! Three years old and three heart surgeries! And he's impacted so many lives already!
    May you feel a deep sense of peace covering over you as you are lifted up in prayer all throughout the world. that you may experience a peace which surpasses all human understanding, no matter what storm comes your way. that you may feel a peace that only God can bring you.
    With tears streaming down my face and an aching heart, I will prayerfully read through your journey, begging God to work His healing hand over your baby.

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