Saturday, February 4, 2012

Rafael's Heart

I've been grappling with the decision of whether to write this post or not. At first I didn't want to because I was too upset and didn't want to go through putting it all down into words. But today I realized that this blog wouldn't be a completely honest record of my life, and Rafael's life, if I didn't.

First of all, Rafael is probably fine. He is joyful and energetic, and is developing as he should be. This made it all the more shocking when I took him to the doctor last Tuesday for a check up and found out that he has a heart murmur.

We've been to two doctors with him; both say it is most likely that he has a small hole in his heart. Both also said that, usually, little holes like his heal on their own over time.

We're taking Raffi to a children's heart specialist on February 13th for a heart ultrasound to find out exactly what is causing the heart murmur and if something has to be done or if we can just leave it be and have it checked regularly.

We've been told that this type of heart defect is relatively common and shouldn't worry us too much. But to be absolutely honest: these past few days have been a blur of panic for me. I couldn't sleep, and couldn't think straight. So overwhelmed with fear and horrible thoughts. I have relaxed a little; it was incredibly exhausting to constantly worry, and I didn't want to waste time and energy being negative when I should be giving Rafael all of my undivided, positive, loving attention.

But I don't think I will be able to fully relax until we've been to the heart specialist. And the thought that we might get bad news when we go keeps haunting me.

In the meantime, I'm just trying to stay positive and enjoy every moment with my son, who is happy and sweet, and oblivious to the hole in his precious little heart.

xoxo

33 comments:

  1. Dawn, my heart goes out to you. While I agree that this is very common and usually heals on its own (I've known people whose children had this), I don't think that information means much to you right now. Your instinct and hormones are telling you to worry and think of awful outcomes. Try not to do that. I know it's hard. That little fella is totally perfect and he'll be just fine with a little time and maturity. I really believe this. Please hang in there and know you have a friend here thinking and praying for you guys. Lots of baby kisses to Raffi.

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  2. Dawn, don't worry too much! I (48) have this murmur (they discovered it when I was a day old), my husband (52) has and one of my sons (19) has it too. Sometimes when there is a check-up with a new doctor, my son is sent to the heart specialist "just to be sure". We are all perfectly healthy. My husband was and my son is an active basketball player. Never a problem.

    Natacha (blogging from Luxembourg)

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  3. Thank you both so much for your support and encouragement.

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  4. My grandma (who lived to be 86 and was healthy her whole life)and my Mom both have heart murmurs. Never a complication or problem from them.

    Praying that you get good news on the 13th and have peace surrounding you until then,
    Elise

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  5. Oh Dawn. My thoughts and prayers are with you. It's our worst nightmare to hear something like this about our children. They are our everything and of course you will be worried and stressed until you get some better answers. I echo what a someone said above, ...I have heard that this is quite a common condition in children. That being said, you are perfectly entitled to be worried, it's only natural. I will keep you all in my prayers and I know that Raphael will be just fine. Give him a big hug and stay strong until your next appointment.
    ps. thank you for the sweet comments left today
    xoxo Love Johanna

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  6. Dearest Dawn, please know i will be thinking positive thoughts for rafael.

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  7. Darling Dawn ...what a horrible worry for you both & thank you so much for sharing it all with us, as you always do in such an honest & open way. Just to add to the other comments, I was born with a heart murmur too, 2 little holes still there . I heard the swoosh swoosh when I had an ecocardiogram a few years ago & when I asked my Mum about it she told me how they had found out when I was 2 months old & they had had the same black thoughts as you naturally do...but it's never caused me a moment's problem, I promise you. Please don't panic too much. I am certain that your perfect little son will be fine. Sending much love & hugs..glad he liked the mouse! Xoxo

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  8. Dawn, I can understand your worry, especially when it is "out of the blue" with no warning signs. I pray that this is a minor problem that will resolve itself quickly and that Rafael is a healthy guy.

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  9. Dawn, what you are feeling is totally understandable. Thank you for sharing, I will be keeping your lovely family in my prayers, I'm sure everything will turn out just fine. Lot of hugs to that little fella.

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  10. Dear Dawn,
    My son was diagnosed with a "double outlet right ventricle, ventricular septal defect" which meant he had a hole in his heart. I was devastated and terrified. Make a long story short, My son just turned 16 and he's healthy and happy. He had surgery when he was 3months old and it was all fine. That probably is not the case for your angel Rafael. The tiny holes can close on their own and heal. That is probably what will happen with you so don't fret. My baby's hole was big and they needed to operate. He will be fine. I will pray for you for strength and courage and pray and hold on to good thoughts.
    xoxo
    Lee

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  11. Dear Dawn,
    Both of my husband and I have heart murmurs and we are as old as the hills!!! I believe that it is quite common. Of course, you are worried, you are a MOM! Just feel all the love and strength surrounding you and love your little baby and enjoy his baby days, he will grow up so fast!

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  12. Hi Dawn,

    I'm sending you and Raffi a huge hug from Massachusetts:(. I'm sure everything will turn out fine, but I can't even begin to imagine how scared you're feeling. Thank you for sharing this with us; I'm sure it wasn't easy. Do keep us posted; you're in my thoughts. Love to you all, Blair

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  13. I know that it is impossible, but try not to worry. My daughter had a heart murmur when she was little but it is gone now. My mother-in-law has had one for her entire life and she is a very healthy 80 years old! Hugs to you.

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  14. I'll pray for you all. It doesn't matter if doctors say you probably shouldn't worry; we still do worry about our children. I know I do. As does my 90 year old mother (who was born with a hole in her heart.)
    nellie

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  15. Dear Dawn,
    My Grandmother always said, "Don't borrow trouble." This is especially true when dealing with a health problem. Like the doctors told you, it is common and will probably resolve on its own. I know it is normal for new moms to worry, I drove myself crazy worrying about radioactive fallout from Chernobyl when my daughter was an infant, even though we lived in Illinois.

    Soon enough you will have the diagnosis, it will be nothing to worry about. But, if it is more serious, modern medicine can work miracles! You and your husband will have a long and happy life with your son. And, on the day he gets his driver's license, you will know the true meaning of the word, worry.

    I hope you can find some peace. If you are finding it too difficult to cope, please don't be afraid to ask for help. Find a support group, your pediatrician will know how to contact them. There are also medical professionals for you to talk to, if that feels more comfortable. Don't suffer alone.

    Good luck!

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  16. I have known several people who have had heart murmurs, my brother, who is 55, being one of them. It is hard as a mother and father to not worry.
    go to this website and read:
    http://kidshealth.org/parent/medical/heart/murmurs.html

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  17. hello...i felt i had to leave a comment today. i often stop by but rarely write any words. i'm sorry. but please i want to give you some reassurance as our little girl elsa also had a heart mummur from birth. it worried me too. i remember when the doctor did the checks just before we were discharged from hospital when she was 2 days old and to hear that something wasn't as normal when he listened to her chest. i couldn't believe it. but we have gone on to have ultrasounds and appointments and all in all she has been absolutely fine. we will go back again soon now she is 2 to see if the little hole has grown over yet. it is impossible not to worry!! i will check back to see how things go for little rafael...and i'll keep you in my thoughts. hugs xXx

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  18. Doctors many times make things look worst of what they are.Try not to worry before the specialist tells you something more precise. I know it is very difficult but be optimist! I will pray for you and Rafael....lots of love!
    Carla

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  19. Dearest Dawn,
    I am so sorry to hear this news and to hear how naturally worried you and Ramon both are. I am absolutely positive that the specialist will be able to dispel all of your fears and worries and confirm that Rafael will grow out of the murmur, just as many children do, including myself. I know that everyone is unique, but it has never effected me in any way and I was perfectly healthy as a chld and have continued so as an adult.
    Rafael has such wonderful caring parents, your love is enough to keep him happy and healthy. I didn't have that and my heart is just fine, so imagine how well Rafael's will be with such amazing parents as you.
    If you would like to chat, please don't hesitate and I will be there for you.
    All of my love
    Morwenna xoxo

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  20. Oh gosh, these things throw you for a total six don't they? I know exactly how you feel as heart murmurs were detected in both my girls at different times in their first couple of years of life. I FREAKED out. Both times. After ultrasounds, they were both diagnosed with innocent flow murmers which was an immense relief. But it took me weeks to kind of calm down after. The thought that our babes, who we love so fiercely, might be made more vulnerable than they already are is terrifying. And I don't think, as mums, we can help being blind-sided by things like this. I think sometimes it helps to have a good old worry and then usually, of its own accord, a little bit of calm and perspective is restored. I'm sure your mind will be put at rest on the 13th. Lots of people will be thinking of you and hoping for the very best news.

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  21. Oh, Dawn...I am sorry to hear of this. Hugs and prayers

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  22. I too was once told that I had a murmur, it's never bothered me and I'm 53! Hey, that rhymed! lol Praying for you all!

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  23. Dearest Dawn, I am sending love and prayers that you and Ramon will hear good news about your precious Rafael.
    Hugs and blessings, Cheryl

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  24. Dearest Mom, I've just overheard everyone saying that i have a hole in my heart, but honestly mom your love alone will fill it out. I'm not worried, so you shouldn't be too. Please - love Rafael

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  25. Hi Dawn, I read your most recent post before realising I had missed your last post, and have just read this. It must be a real shock for you, to hear this news out of the blue. I truly hope that this isn't anything too serious, as the doctors have indicated, and I'm sure you must be gladdened to hear of all the accounts from people who have dealt with this problem.
    I don't actually have any kids, and so can't even begin to imagine the extent of both your worry and your hope that all will be well. What I will say, though, is that your pictures of Rafael truly do make my heart melt, not just for him, but for you too. He looks, so, so happy and contented. Your joy and love is so apparent, and you have my sincerest wishes that this will right itself in time as he grows.
    Dan
    -x-

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  26. I read now this post and as Carla said I think doctors are often sharper than they should be, I'll have you both in my thoughts till you'll see the specialist and I wish you will not need to worry. ciao Mada

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  27. Dearest Dawn,
    Last night I wasn't logged in while I wrote that message. and now I don't want you to be any more worried than you already are wondering where that message came from. It was just written with the hope of bringing back a bit of a smile onto your face. But am also sure it would have been really from lil Rafael, had he only been able to speak or write.
    Thinking of you and lots of prayers for your family. God Bless.
    Niru
    http://mytwinklingmoments.blogspot.in/

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  28. Dear Dawn,
    I echo so many of your readers in that I know so many with heart murmurs. I wish for you comfort and peace while you wait to see the heart specialist. I know it is so hard not to worry, I know how paralyzing it can be. I'm sending along a big cozy hug and lots of warm twinkling light to snuggle you and your sweet Rafael.
    xoTrina

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  29. Oh Dawn. My heart goes out to you. My dear daughter went through a very similar thing with her little son a few months after he was born. All babies are born with a small hole in their hearts and they do normally close after time. She panicked, worried, lost sleep, rushed him to specialists and then found out that it was a pretty normal thing and that it would just take some time and to come back in a year and not to worry. It's been just over a year, he's been checked again and he's just fine. I pray that it will be a similar story for you sweetling. I know that your little Raffi means the world to you.

    Diane

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  30. Dear Dawn,
    Sending prayers for a complete healing for sweet Raphael's heart and yours too!
    Jacqui G

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  31. i am praying for your sweet boy. he will be just fine. healing prayers for his heart, sent your way.
    xo
    ps: our friends just went through this, and their boys heart healed up just fine. xoxo

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  32. He is going to be absolutely fine Dawn; I was born with a heart murmur and there were times when different doctors wanted to do surgery....mine is barely audible now and I'm a mother of three grown women and have two grandchildren....

    Rest easy....God has wonderful plans for all of you!!!

    xoxo
    Joann

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