Thursday, July 21, 2011

Heart Surgery After the Fact

Ollie's heart journey was a scary one.  I have always had faith in God, but Ollie's health tested my faith & made it grow stronger.  You think you have faith until you have a child with a major health issue, and then you realize just how much you need to grow that faith.  I can't even explain the process we have been through.

People often ask me how that experience was, and here it is six weeks post surgery...


I am now thankful for her heart story.  I never thought I'd say open heart surgery was a great experience, but it truly was one of the best, most beautiful experiences in my life.  It sounds so funny to say that, but it's true.

I learned to give it over to God, and for those of you that have done this you know how hard it REALLY is to do.  She was in his hands.  I handed my baby off broken, with a heart that she couldn't survive with.  Through big tears, I told her to be brave and that Jesus and the angels were holding her hands.  Jade & I were more afraid than she was.


A living angel fixed her.  I don't know how he did it so well, but I truly believe God works through that man.  Everytime he spoke to us I would just stare at his hands and think, those hands are truly miracles.  He returned Ollie to our family with a healthy heart!  In a matter of 4 hours it went from broken to beating beautifully!  It is one of the best sounds I have ever heard.

When we left Children's Hospital to head home, Jade said that was one of the worst weeks of his life.  I quickly said, no honey it was the best week of your life.  He then agreed.

You see, for as stressful as it was & for all the tears that led up to that day, it's behind us now and we get this beautiful baby.  No more fears, no more worries, just her huge charming personality.  Aubrie & Everett have a healthy sister that can now play with them.


I also believe I am at a better place because of what Ollie has gone through.  You see, I don't grieve at all about Down Syndrome anymore.  I don't think of what life would be without it or who she would be or how I would change things.  I don't worry about her future.  I think when you have a healthy child with Down Syndrome it's sometimes harder for families to move beyond the Down Syndrome.  I believe they feel broken for a longer period of a time. 

A child like Ollie, with a serious heart defect & Down Syndrome changes that view.  All I have cared about since her birth was her heart.  I didn't want to lose my baby.  Even though I had this strong faith in God, there was that nagging piece of truth in my brain that she could die.  I never spoke of it, but I felt it daily on my shoulders that we could potentially come home without her to a nursery and all her things, without our baby girl.  That snapped life into perspective so fast for me.  It was a good fear.  It was a fear I swallowed daily & prayed continuously over.

I am grateful for it.  I look around today and count my blessings constantly.  My house is messier than it's ever been, but it doesn't seem to matter like it used to.  I am much more patient with my kids.  I see the beauty in every day things.  I am a bit of a control freak, and anymore I am not so much.  I am relaxed & breath easier.  When we have a fun day, I truly reflect on it and think we have such a sweet life, we are so blessed, and I truly praise God daily.  I don't send him a list of needs and wants for myself, but I praise him for what he has given me because he is good & without him I know the mess of a person that I would be.


17 comments:

  1. Oh Annie, this is SO so so true. When you say, "I think when you have a healthy child with Down Syndrome it's sometimes harder for families to move beyond the Down Syndrome. I believe they feel broken for a longer period of a time." that really hit home for me. Down syndrome really doesn't seem very challenging after going through heart failure and surgery. I feel like I could have written this whole post, but I'm so glad that it came from you. It really is a happy story once that fear is past. So happy for little Ollie and for you (and for our little Cora too!)

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  2. :) I love your heart Annie. You are so darn tough and yet still marshmallowey soft! :) I'm glad we're friends.
    xoxoxo, Heidi
    PS That last pic of Ollie with Jade is A.DOR.A.BLE!!!!

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  3. even though she is not my own baby, i know exactly what you mean. I was so sad Ollie had DS. i was so disappointed that she wasn't gonna live the life i had in mind for her, then it turned out it didn't matter if she was gonna have a "typical" life, it only mattered that she lived past her surgery date. i don't think about her limitations, just look forward to when she is finally big enough to come work at my office with me and paint nails at maggie's salon. my patients will absolutely adore her. without a doubt.

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  4. I would never have gotten through it without God, and grew so much closer to him through our journey. If we were given this difficult road for no other reason then to become closer to God, I am grateful. I was talking to my husband today about Denmark- how they are trying to be down syndrome free in the next 20 years. I wouldn't want my daughter any other way, and don't see DS as a negitive part of our life, it is a beauitful challenge, an opener of doors to people we would never have known, a gift in disguise.

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  5. Thanks for putting these words to your incredibly sweet heart! They really DO "magnify" the Lord (as some Bible verses say)!

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  6. I think that you got it exactly right - Ainsley's DS would have taken a bigger toll on me if I hadn't had to worry over her heart. Great post, Annie! And the pics of Jade & Ollie are so great!

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  7. This was beautiful! I have to tell you, after Russell was born and we found out about the Ds I grieved hard, to me it was the worst thing imaginable. Then two weeks into our NICU stay they ran some tests to see why he was still requiring oxygen, his heart scans were not coming back clear and they thought they were seeing three holes...They told me they were running a test and if it came back positive he would be flown immediately to Vancouver, hours away, for surgery...It was then that Down syndrome took a back burner, it was then I realized that Ds wasn't the worst thing in the world...And it was that night that I finally made peace with God and told him I accepted the Down syndrome just please let Russell be healthy.
    This post hit home for me...Loved it :)

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  8. This post is absolutely beautiful and brought tears to my eyes. My name is Kristen and I stumbled upon your blog shortly after learning our own baby boy has several heart defects. Heart surgery is a scary thought that crosses my mind daily, but I so long to be where you are now :)

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  9. I have felt most of those same feelings since my baby was born. I thank God every night for Henry's heart, that it was repairable, that amazing doctors, nurses, surgeons and cardiologists were put in our path and that He gave me this little gift and the wake up to re-focus, get my priorities straight and enjoy every. little. thing. Whether sweet baby smiles, tearful 2am wake-ups, exploding diapers or grubby baby hands reaching for a hug. I cherish it all and in moments of frustration remind myself that at least I have him, it could be so different.

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  10. Annie, you have learned a great lesson, one that many people never have the opportunity to learn. You now know what really matters in life. It's hard to believe that it's been 6 weeks. Ann {{Ollie}}

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  11. this is true and I am thankful for our truths. God is great. Ollie is his gift to us.

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  12. I appreciate your faith and love. I have faith in God too and I look forward for his bless and I know all he do is bless.

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  13. Great post! I'm thankful that Ollie is doing so well! She is a cutie!

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  14. Thank you :) That blog is awesome! And Miss Ollie is perfect and beautiful. You capture some of the most awesome faces in your pictures. And thank you very much for offering your support! The support of friends/family and other heart moms has proven invaluable in getting through everything with Maddoc.

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  15. I hear you! In every single way, I completely agree. I am so glad that Ollie is well and past her surgery, that both of our girls are.

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  16. That was a REALLY interesting perspective, Annie, and one that I never actually thought about! The fact that it may be easier for families of the sick babies with Ds that need surgical intervention to come to terms with the diagnosis because their energies and worries are shifted to keeping their baby alive...quite possibly very, very true. Great post, beautiful girl.

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Thank you so much for your kind words & support! I love hearing from you & read each and every comment you leave for me! ~Annie

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