Tuesday, August 14, 2012

A "Hole" That Needs Filling

Typically, I share little moments of learning and fun in my children's lives and other important topics on play and development through this blog, nothing too personal or big.  Well, something big blindsided us recently, a big hole.  I wasn't going to share this at first, but then realized I might be able to get some help filling this "hole" by sharing.


My four and a half month old son Devin has a big hole in his heart that needs to be fixed.  Fixed means an invasive open heart surgery.  No one was aware there was a problem; he doesn't look or act sick.  He's a very engaged and typical developing baby.

Last month, I noticed some congestion I was feeling and hearing in his chest.  I thought he was getting a cold.  A friend mentioned something the following day while she was holding him and said, "You might want to get it checked out."  I'm not one to run to the doctor for what I thought was a cold, but her prompting made that little voice inside of me say, just go, he's fine, it won't hurt anything.  So I called my pediatrician and took Devin to see her the next day.  She listened to his chest, told me the congestion was fine, but then dropped..."I hear a bit of a murmur."  WHAT?  Apparently congestion can pronounce the sound of a murmur.  I was referred to a local pediatric cardiologist that we were scheduled to see the following day.  Oh, did I mention my husband was on the other side of the country for work while this was going on?

With baby and four year old in tow, by myself, I braved the inside of an office I thought I'd never see.  We were there for hours.  The staff was wonderful, Devin was in a great mood during the testing, and Aidan was extremely well behaved.  I had convinced myself nothing significant was going to come of this visit while I waited for the doctor to look at his results.  When he returned to the exam room he pulled out a few forms and began explaining to me that Devin has "a pretty large hole in his heart, about one centimeter big."  A ventricular septal defect, as well as a gerbode defect.  Everything he said to me that afternoon is burned into my memory as he showed me pictures of the ultrasound.  I was very quiet, I held back tears so I could think clearly, so Aidan wouldn't see how upset I was becoming inside.  I had to remember everything, so I could call my husband and tell him what had snowballed in the whirlwind of the past two days.

As soon as I left the office and got into the car, I dialed my husband's cell phone number.  I somehow managed to not cry until after I told him everything.  His enlarged heart, little clues that were actually symptoms of the defect.  Afterwards, he asked if I needed anything...I needed to cry.  I hated that I had to tell him over the phone, I hated that I never noticed how tired Devin had been getting, I hated that I never realized the way he panted was not about being excited, but because he was trying to get more air in his lungs and oxygen to the blood in his heart.  I couldn't believe I didn't "see" these things.

Aidan quietly asked why I was crying.  "Do you remember hearing what the doctor told mommy?  Devin has a hole in his heart that needs to be fixed, and it's something that scares mommy a little."  Aidan looked at me and simply said, "When we get home mom, I will take care of you.  I will get you a blanket so you can take a nap."  Those words felt like a warm hug to  me.  When we finally did get home, I was fortunate to have a friend over to talk with.  I was up late talking to my parents on the phone after she left.  I listened to the static on the monitor in Devin's room, straining to make sure I heard him breathing.  I was tired, and I didn't sleep well.

I cried the next morning as he fell asleep while I nursed him, now knowing it's his precious little heart that was causing his eyes to close.  As my friend kept repeating over and over to me the day before, I had to remind myself, he's not any different right now than he was before you knew.  The more I talk about the defect, the easier it is to relax a little as my husband and I share the news with other family and friends.

Devin is on a medicine that is helping to relieve some of the stress on his heart for now, so the rest of his body can work on growing like it should until the surgery.  We are fortunate to live not too far from a great surgeon, at a very good children's hospital, that will close the hole next week.

As we get closer to the surgery date, I think about how he will go on to live a normal healthy life, but I also think about how nervous I am for when I will have to hand him over.  I know in my own heart that he will be okay, and I know there is a lot of love out there that can help fill this "hole" in his heart.  So please, keep our little Devin in your thoughts and prayers as we work on making him whole again.

Thank you,

Heather

13 comments:

  1. I cried so much reading this.... Good luck... My prayers and thought are with you....

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  2. Will definitely keep you all in my thoughts. A very dear friend of mine's daughter was diagnosed with the very same thing about the same age as your Devin. She had the surgery and is a thriving, happy and healthy 12 year old girl now! Best of luck!

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    1. Thank you for sharing this. Successful stories and good thoughts are helping to void out the crazy scenarios running through my head :)

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  3. I too cried reading this. Its very sad that your little baby as well as your family has to go through this. In the end though everyone's tears & prayers will be worth it and Devin will be all better. It sounds like you guys will be in good hands with the hospital & doctors down there. I will be thinking about your family next week and will keep my fingers crossed for you that his surgery goes well. You & Scott are very strong ppl and are loved by many. Hang in there guys :)
    Mary

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    1. Thank you Mary, it warms my heart to hear this.

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  4. happythoughts-happythoughts-happythoughts, for you and your family

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  5. KEEP the FAITH Heather! I am praying for Devin, you, your strength. LOVE YA Beth

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    1. Hi Heather, I just read your story and will be praying for the entire journey you are on, just remember God is good and like you said you have great doctors and God will guide there hands as they work to make Devin whole. Beth Karlson

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  6. I will be thinking of you, your family, and your beautiful little son during this time, Heather. Our youngest began developing in utero with a crimped artery in his heart. I look at him now running, laughing, and I completely forget we had many moments of worry, doctor's appointments, and tests. He's healthy and happy now; and, I wish the same journey back to normalcy for your son and your family. Thinking of you. ~heather

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  7. Heather, I too had a child with a hole in his heart. He had surgery at Milwaukee children's hospital and just turned 38 last Sunday. I can relate to the fear you are feeling for your precious baby but be glad you found out and can have it repaired. Doctors are very wise and have come along way over the years and with prayer and God's guidance everything will work out. I'll pray for Devin and for your family.
    Laurie Miller

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  8. THANK YOU ALL! Your stories and thoughts do help give me good feelings, and a sense that we are not alone in this. I will be posting an update at some point after his surgery next week.

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  9. Heather, I really enjoyed reading what you wrote, and I know this is a weird choice of adjectives. But is was so well said and conveyed what you are felling so well. I am so proud of you and your family, i just know you will all be okay. You are helping others while helping yourself. And most of all so much love and prayers are coming yours and especially Devin's way. I am praying special prayers that the doctors hands are guided by God as they fix the hole, but you know Devin's Heart is already whole and perfect. Laura aka "Auntie Lorla"

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  10. I almost cried while reading this. You don't know me but I'll be thinking of Devin Tomorrow.
    I am sure that tomorrow everything will be ok for him ;-)

    Christophe

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I love hearing from you, stop by any time!
-Heather