Sunday 15 September 2013

heart.

   As I near the end of my pregnancy with our third amazing little boy, I have found myself struggling on whether or not I should write this post. I've thought that a lot of people in our lives will want to know, want to help, and even possibly be hurt by not knowing. I have also had the other end of the spectrum with, not wanting to share, not wanting to bother people, not wanting to deal with the sympathies and questions.
I came to realise that by not sharing, it was possible that I was not dealing with it fully. Even having been in a near constant state of hopefulness and optimism (regardless of the tears), it doesn't have to be quite as 'real' if most people don't know.
I also didn't want anything negative to define our littlest boy, but I realise that sharing what we have/are/and will being going through will not only show how much of a fighter he is, but it could possibly help others in the same situations. To hear a personal story is something I have found priceless in preparing for my little boy and the road we will endure in the next few months.

Our little heart warrior.

This all started when we sat, making jokes, killing time, awaiting the ultrasound technician to let us know all was good and we could go home. We were at my 20 week anatomy ultrasound, and with my previous experiences they were a pretty quick thing. After waiting for what seemed like hours I started to feel a little uneasy. When the Doctor came in with the tech, I knew there was something up.
The doctor was spouting off big words and might as well have been the teacher from Charlie Brown. All I heard was 'Variation in major vessels of the heart', 'will need to see you right away for fetal echo'. I know I had the deer in the headlights look as I opened my eyes as big as they could go in order to not cry. I felt so silly having been so preoccupied with looking for the baby's gender when being faced with something so serious.
Of course 'see you right away' was a week away. It was a really long week of unknowns, I felt sick to my stomach all the time, and I found myself staring into nothing a lot, just waiting for the next ultrasound.
The next week, during the fetal echo (which is a focused ultrasound with fancier cameras) Dave and I held hands, staring at the screen, watching our little baby's heart beating well. It had four chambers, no holes, and the blood was mixing as it should. The doctor came with the technologist again, and sat us down to explain what they had found, and the basic anatomy of it. Then they sent us off for lunch to return to fetal assessment for a follow up ultrasound to confirm what they had found.
The high risk Obstetrician explained to us, while confirming through the scan, that our little baby had a congenital heart defect. Transposition of the Great Vessels, also known as Transposition of the Great Arteries (TGV or TGA). It is literally what it sounds like, the position of the great arteries (Pulmonary and Aortic) are switched where they enter the heart. This makes the blood circulate through the lungs, come back to the heart, and then re-circulate through the lungs. Leaving the body with blood that has no oxygen. While in utero, the baby has a valve that remains open and mixes the blood well regardless of the heart defect. Once born this valve closes, and the defect is fatal unless treated fairly quickly.
The OB was very understanding, very good at explaining, and very good at answering all of our questions and fears.
We found out then that this meant our baby would need a echo cardiogram, a cardiac catheter procedure and medication right after birth, followed by open heart surgery to fix the defect, within the first week of life.  While taking in all this information, when the OB asked if we wanted to know what we were having, we both knew that having a little something to take our minds off the news we had just received was a good idea. We were having another boy.

At first, after learning all of this, everything seemed surreal. I floated around in a fog, trying to wrap my head around what all of this meant. After many more ultrasounds, cardiologist appointments, neonatologist appointments, as well as my regular appointments with my midwives, we found there is a very straightforward plan. We are in wonderful hands and I couldn't be more thankful for everyone who has been a place of constant support through this endeavor. I was also extremely happy to learn that because our little boy is fine while incubating, I have been able to keep with my midwives and not been shuffled off to a high risk obstetrician. This has been a great source of strength for me, as they are very much on the same page as I am. They are my advocates when I can not be, and have been able to share very positive experiences with me about similar cases.
We have also been very fortunate to have a huge, amazing support system. Without all the people that have been our rock, I am not sure what we would do.You all know who you are, we love you and want to extend an impossible thank you. To infinity.

I am hoping that with this post we can keep family and friends updated, I do plan on updating as things happen. I am not sure how often this will be, but it is with my best intentions.
We also hope not to offend anyone, but we would really appreciate our continued privacy during this time. Thank you for taking the time to read this post, and thank you everyone for your continued support, it really does make a difference no matter the extent. Thank you.




12 comments:

  1. Hang in there Candace! The team at the IWK is great. Let Marg and I know if we can help in any way.

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  2. This is so beautifully written, Candace.
    I won't say I know what you're going through, because I don't. I do know, however, that this little boy has one of the strongest Mama's I know, and that if he inherits even half of your strength he will come through this with flying colours! :)

    I thought I'd ask - is your blog readable by the public or is it private? Are others who you don't know able to read it? Do you mind if they do?
    I know this is a stressful time, but I sincerely think that other Mama's who are going through similar would completely be able to relate to all of the worries and emotions you are feeling.

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  3. Thanks Jen :) Means a lot!
    The blog is open to the public, I was hoping that it would be able to help anyone going through this, or anything like it.
    Stumbling on others blogs, and being able to read them has helped me so much. Personal stories always seem the most relate-able.
    xo
    Candace

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  4. Thank you for sharing Candace. I am sure that words cannot totally express all that's in your heart. What you have shared will bring hope to many others and will also show you that there are many who are supporting you through this. We will be praying for all of you and especially this precious little one who will have his "birth day" very soon. God Bless, Aunt Cheryl

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  5. Candace - your strength, courage and positive outlook on life will get you through anything you will need to handle. You have an amazing support system all around you - use that when needed :-)Everything will work out for the best - all you need to do is stay focused and positive :-)

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  6. "At first, after learning all of this, everything seemed surreal. I floated around in a fog, trying to wrap my head around what all of this meant." I remember this feeling all too well. My son was born with a large hole in his heart and had to have open-heart surgery at 4-months-old. Yes, you will be anxious, and cry, and hopeful, and scared, and question God. Yes, you will want to talk about it and then, no you won't. This is huge and it is so far from what it feels like normally to have a baby and bring your sweetie home. It is hard, but you and your family and your beautiful new baby boy will make it through it. Allow yourself time to feel and deal with all of your emotions and then move on (that doesn't happen quickly - I'm talking years). My son is now 23-years-old and a beautiful young man finding his way in life. I look forward to your updates, if you should choose to do so. If not, I totally understand. Godspeed to you and your family.

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    Replies
    1. Thank you very much! It is always so nice to hear from people in similar situations and how their children are doing now. Thank you!

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  7. Candace and Dave, Thank you from all for sharing. Maintaining a positive spirit plays an important role, keeping things positive around you is as important too. The tears have a role too. They have a very real job to do. They release hormones that would have a negative effect on us. Allowing tears helps us to stay healthy as a whole. Mind body and soul. Inserting as many positive and feel good things that make happiness and peace bring out the healing hormones. The hormones that give us energy and strength...there is a real science involved as well as our spiritual side.
    Though some of us are separated by geography, we are together with you each step of the way.
    We love you dearly and look forward to watching our little grandbaby boy play along with his awesome big brothers.
    The love you share together, the joys and the challenges along the way will give your precious family a bond stronger than any other.
    Our little heart warrior is beginning his life with the best mommy and daddy a child could ask for ...
    lovie xxoo mom and Shannon

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