December 12, 2013

six months old {and her surgery date}

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I can’t believe Ruby is 6 months old already (last Thursday).  Which also means her surgery is soon.  As in next Tuesday, December 17th soon.  That is the day her little heart will be repaired.  The day they will open her chest and actually stop her heart and put her body on a bypass machine for 30-90 minutes.  I’ve thought a lot about the bypass machine—at first it terrified me, but now I am truly in awe at what they can do.  It really is amazing. 

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Oh my little baby—keep being strong.  The last 6 months of Ruby’s life, she has gone to a doctor’s appointment every week to check her weight and her saturation level—sometimes we have had 2-3 appointments in a week (bless my other children for being such troopers and tagging along!).  She’s had IV’s placed, blood work done, x-rays, echocardiograms, and will have more pre-op work done on Monday.  It is so hard to watch your little one who just doesn’t understand what is going on.  She has quite enjoyed her visits for the most part—it’s a little social call to her.  Doctors and nurses walk in and she has been all smiles—until the last couple of times with the IV’s and blood work.  The look on her face is so sad when they poke her.  Especially because they haven’t been able to get them done with the first poke—her vein collapses and they start over on the other hand or arm.  Yes, it’s sad.  And only the beginning of a hard week ahead of us.  Everyone keeps telling me they bounce back really quick—and I know she will. 

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When Bailey (my 5 year old) had surgery at 2 months old on her head, I remember thinking I was just going to lose it once we handed her over to the surgeons.  Once we did, kissed her, and said our goodbyes, Dillon and I watched them walk through the doors with our little baby and we turned to go to the waiting room, holding hands as we walked.  I was scared for her, and at times absolutely terrified with the thoughts of what they were doing, to be honest.  But as we walked down the hall, I felt an overwhelming sense of peace.  When I mentioned it to Dillon, he said he felt the same way.  I know that we will feel the same about our little Ruby after saying our goodbyes.  Yes, it is really, really hard to think about her going through this.  Really scary and yes, sometimes absolutely terrifying to think about the what-ifs.   But we have so many people praying for her.  We have been absolutely humbled by the outpouring of love for our family and Ruby Jane.  And God will be there with us, and more importantly, with Ruby and the surgeons as they operate on her heart.  And we feel peace even now as we prepare.  We know it will be hard and we know there can be hiccups in the road.  But we have faith that things will be how they should. 

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(thank you so much Abby for the shirt—it’s perfect!!!).

We are still praying that she will only have to have one surgery.  As I’ve stated before (you can read more on her heart HERE), the average number of surgeries with Tetralogy of Fallot is 3 in their lifetime.  We are really, really hoping this is it for her.  She has done so well.  Yes, she only weighs 12 lbs 7 oz (today), but she never had a blue spell—not one!  She wasn’t on oxygen and didn’t have to take Lasix to control the fluid on her heart.  She is seriously doing as well as she probably can with this heart defect.  To me, that is a miracle!  Besides her weight gain and a few signs of heart failure (we are talking gradual heart failure—a term that sounds awful and can be awful, but will hopefully be fixed after her surgery), you would never know she had a defect.   Getting her heart repaired will hopefully mean a long and healthy life for her—one where she will not die at a young age due to her heart failing.  One where she will hopefully be able to have her own family.  And know what it is like to have such an overwhelming amount of love for the souls in her care. 

Happy 6 months baby girl.  You are such a blessing to us. 

July 20133


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18 comments:

  1. Good luck to her and your family as well! She will do well and this surgery will help her out so much :D
    Keep us posted on her recovery!

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  2. Ruby has stolen my heart since you've been writing about her condition. I pray to God for her. At the same time I'll be praying for my sister who's starting the steps to have a bone merrow transplant before Christmas. Thank God for doctors and all the progress in medicine procedures!!
    Love,
    Norma

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  3. Oh, how I recognize your feelings!
    Our little girl had open heart surgery when she was six months old, to fix an ASD and VSD. That is two years ago, and except for the little 'zipper' scar on her chest, you'd never know. It's amazing what they can do these days.
    Wishing you all good luck for the surgery, and hope for a speedy recovery for your little girl!

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  4. she is such a darling girl! good luck with the surgery, keep praying, we know prayer works! keep being strong ruby, you are loved by many!

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  5. What a little sweetie. I will be praying for you, Ruby and the doctors as you walk this road. May you have the peace that passes all understanding.

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  6. I will mark her date on my calendar so I don't forget to keep her in my prayers next week! How sad that her veins collapse and they have to do it again! I hope everything goes well with her surgery and recovery, and that your family stays healthy during it all as well. She is such a cutie, and I love both her shirts in this post! Please keep us posted, the best you can---we know your #1 priority is her and your family--as it should be. :)

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  7. I will pray for your family next week! Ones of my boys needs to have frequent IVs due to anemia, and we have found that applying a topical numbing cream such as Lidocaine in several potential IV locations about 30 minutes ahead of time has resulted in absolutely no pain. I don't understand why they don't routinely do that for babies since it is harder to place an IV, but maybe you could ask about it.

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  8. Praying that you will continue to have God's peace, and that your sweet little Ruby will get through it all as hoped. xx

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  9. God be with you, your Ruby and the rest of the family. Thank you for sharing this update. It still amazes how sweet and healthy she always looks.

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  10. Oh Christie! I teared up through this whole post. You are such a good, faithful example--thank you for being so brave! Praying for your family and especially precious little Ruby!

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  11. What a little sweetheart! Happy 6 months Ruby! I am a heart mama as well. My little Elliott had his first open heart at 3 months old and had his first cath last week at 16 months old. He'll have another surgery at some point. But I just want to say...she WILL bounce back. I feel like I am just now bouncing back from the whole thing, but Ruby will be fine. She will feel even better than she did once she's healed. Lots of love to you guys!

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  12. I truly hope she will do well, just like our little Ernest did. I will be burning a candle for her next Tuesday.

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  13. Praying along with you and your little Ruby. Prayers of peace and comfort for all of you! She's beautiful!

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  14. She just looks like a joy! We will also pray for Ruby, and your whole family!

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  15. My heart baby just turned seven. He had his VSD repair at 6 months and was 11 lbs and on Lasix. We went last year for his 5 year post op and heard the words "just like a normal kid" from our cardiologist. He's a wild child who rodeos and wrestles and loves to run and seemingly never tire out. You will look back on these days of worry and be so thankful. She looks like a strong baby girl and you are a strong mama. Prayers for peace in your heart and a quick recovery for your princess.

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  16. Christie, I just wanted to tell you that I am praying for your sweet little Ruby during her recovery. I had open heart surgery at 9months old, the youngest patient ever at the time, and I am now 41. I was a cheerleader, ran cross country, have three healthy children, and live a full and wonderful life. I just want to encourage you that girls with congenital heart detects can have happily ever afters, too....no matter how difficult the beginning of the story.

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  17. I am praying for Ruby. In 2010, I had emergency open heart surgery for a ruptured aortic aneurysm. God did a miracle for me and I know that He will do one for little ruby as well. God bless you all with the peace that passes all understanding.

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  18. I am sure you and your beautiful family will do well! Best wishes from across the ocean.

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