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Ruby’s Heart

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I’ve been putting off writing this post because it’s hard to put it into words how you feel when your little newborn baby is born with a congenital heart defect.  I don’t like to think about it.  I don’t like that nearly every time I look into Ruby’s sweet eyes, I think about her upcoming open heart surgery.  I want to enjoy her life and not have this shadow of fear lurking around.

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Thankfully, through a lot of prayers we have many peaceful, joyful moments with sweet Ruby Jane.  It’s still hard.  Not knowing the outcome of something can be terrifying.

Dillon and I were told while still in the hospital that Ruby has Tetralogy of Fallot.  A loud heart murmur and rapid heartbeat caused the pediatrician to order an echocardiogram which was sent to a cardiologist at Primary Children’s Hospital, who wanted to see her very soon.   We met with the cardiologist when she was one week old, on my husband’s birthday.  The cardiologist drew a picture of Ruby’s heart and labeled six things that are wrong with her heart.  We talked about the first surgery, hopefully between 4-6 months, depending on how she is doing with her oxygen levels.  We talked about weekly weight checks and saturation tests.  We talked about physical limitations in her lifetime (thankfully not many–just avoid contact sports).  We talked about how many surgeries she would need in her lifetime (the average is three).  We talked about blood work and starting beta blocker medicine next month, along with more echocardiograms and such.  It was a long 2 hours at the hospital.

A lot of people we’ve talked to have said, “Oh, so and so was born with that, but they outgrew it,”  or other simple solutions.  This is not the case with Tetralogy of Fallot.  If not operated on and fixed, there is only a 5% chance of those with Tetralogy of Fallot making it to their 40’s.  Only 4 in 10,000 kids are born with this congenital heart defect in the US per year.  So as much as I wish it was something that she would outgrow or that would fix itself, it’s not.

BUT, we are hopeful.  The success/survival rate of those who have a full repair on their heart is 95%.  So the odds are wonderful.  She is home and doing great.  She is what they call a pink tet, meaning her heart is able to get the oxygen her body needs throughout it.  She is gaining weight.  And we are loving and cherishing every minute with her.

I have had many moments of just plain losing it and bawling my eyes out.  Hearing stories that didn’t work out just crush my soul.  But my sweet hubby said something that thankfully has stuck with me because it was perfect.  Friday, June 7, is when we found out, and that night I was alone in the hospital with her for about an hour.  It was dark in the hospital room and I was just holding Ruby tightly, crying like I’ve never cried before.  Dillon got back to the hospital and sat on the bed to help me, taking Ruby and rocking her, gently reassuring me that things were how they were supposed to be.  I will never forget that night.  I will never forget Dillon’s perfect words of comfort for this very emotional post-pregnancy momma.  One of the things he said was, “Christie, this is how God sent her to us.  This is how He wanted her to come to us.”  And that brings me an enormous amount of peace.

And so, to the father of my children I wish a Happy Father’s Day.  Because of Dillon, I get to have my sweet children.  I am so thankful for my kids.  I am so thankful to my Father in Heaven for blessing us with four beautiful children.   And we will take them however they come!  Ruby is still perfect to us.

I thank you all for the sweet comments here from Ruby’s birth post, and also for the words of comfort and support on instagram or facebook, since I already shared the news there.  Blogging will probably not be normal around here for a long time.  I have a couple posts scheduled from before I had Ruby, but mostly I’m just going to try to regain some normalcy after having a baby.  You all know how that can be.

Now I have a 12 day old little Ruby Jane to go snuggle.   :)

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Comments

  1. Christie, Dillon, Carson, Devon, Bailey, and little Ruby Jane,
    We just wanted to let you know that we are praying for you at this difficult time… Our hearts broke when we found out your sweet Ruby had a heart defect. We can’t imagine what you are going through.Please let us know if there is anything we can do. With love, Brooke, Reese and Taylor

  3. Praying for you all and your husband words are right. May the surgeries go quickly and recovery swift. Enjoy all those beautiful snuggles

  5. will be keeping you and your family, esp little Ruby in my prayers. how heartbreaking to hear, but so glad that she has a huge fighting chance!

  6. I was just skipping along catching up on blogs and now I’m in near tears. I have 5 children, each child is such a precious precious gift… I will keep your little precious and perfect Ruby in prayer.. as well as the rest of your family. God knows what he’s doing. And by the sounds of it he gave you the perfect husband to be by your side… Peace and Love to you, Tammy

  7. My daughter was born with a congenital condition too, it’s not life threatening but it can get very complicated, it’s one of those ones that they just don’t know enough about so we live in the dark. I just wanted to let you know that I’m thinking of your family and I understand a little of what you’re going through. I too don’t like to think about it, it’s so hard to face. Take care and best wishes for the surgery. Blogging can wait. I will keep your precious baby in my thoughts xx

  8. Christie, I wish I would have known when I came by so I could’ve given you a huge hug. We love your family and will be praying for all of you, especially Ruby. She couldn’t have been sent to better parents– to a better family. You amaze me!

    Love, Michelle

  9. I’m so sorry Christie, I’ve been contemplating on what I can do for you ever since I heard. I think I can definitely add my prayers to the many already being said, and say we love you and I know we are all hopeful that everything goes well.

  10. Oh, Christie! There is no worry like a mother worrying about her babies! Praying for peace in your heart as you face the future…

  11. Wow, what a beautiful thing your husband said about her being sent this way. It brought peace and understanding to me as well, but I can only imagine how scary this is for you and your family. I will keep you guys and your doctors in my thoughts and prayers. I’m so glad that she’s getting enough oxygen and that she’s gaining weight. She must be a little fighter! Please don’t worry about blogging so much, but do update us on things as you can. Thanks for sharing with us at this delicate time! Take care!

  12. I don’t usually comment, but when I heard about Ruby and her heart I was so happy for you that she’s here and sad about the heart at the same time. Please don’t worry about blogging. We can wait. Snuggle that baby, as any mom knows- it goes by too fast. And wow, what Dillon said was the perfect thing to say. May god bless you all as you journey through these next few months.

  13. Thinking of you and your family at this difficult time. Enjoy and embrace the moments of joy little Ruby brings to your family every day. Our hearts are with you.

  16. God bless you, Christie! Even in this difficult moment you sprinkle optimism and joy of life! All will go as it should, everyone knows it. You’ve got 5 jewels, treasure them. We will pray for you. Hugs, Olga

  17. I don’t know you, but my heart broke for your family when I read about your sweet Ruby. I am a former NICU nurse so I can imagine a little piece of what you are going through. And I’m so sorry but it sounds like you have a sweet little fighter. What your husband said was just perfect! Praying for all the surgeries to go well and for lots of snuggles for you!

  18. Preying you all make it through safe, our dd was diagnosed with jubilee arthritis at 3 years old, nothing compared to what you are going trough but I feel some of your heartache xx

  19. I am so sorry to hear that your daughter was born with a heart defect. I am writing this in the hospital, as my son has to have his appendix out. I am surrounded by very brave children and their parents who a dealing wit much more serious illnesses such as yours, and it really makes you sort out your priorities. I am thankful that my son has an easily treatment ailment that will be completely over in a few days. I pray for all of you families who are in it for the long haul. My very best wishes to all of you.

  20. Hugs, Christie. I’m going to share what your husband told you with my best friend and her husband. That is so perfect, what a wise man. We are still waiting on word from them about their baby little boy, things have been up and down since the surgery (at one point he went into cardiac arrest) but the last update I heard was positive. I can’t even imagine how you’re feeling, I’m having a hard time dealing with day to day reality while waiting to hear whether or not I’ll ever get to meet the baby that is supposed to grow up to call me Auntie Laura on this earth or not.
    In reference to Fathers Day, I sent them the text, “As a father has compassion on his children, so the Lord has compassion on those who fear him.” How awe inspiring! Everything you feel thinking of Ruby Jane’s ‘broken heart’, the Lord feels thinking of yours.

  21. I will keep you and your family, especially Ruby Jane in my prayers, Christie. I think your husband’s words are so true. I know she is a beautiful blessing to you all, but she is also so blessed to be a part of such an amazing family. ((big hugs))

  22. I enjoy reading all of your posts but don’t normally comment. I’m sorry that you and your family have to deal with this and will say a prayer for you.

  24. I don’t want to presume to know how you feel, since this has never happened to me with my own kids and I don’t ever want someone to think I’m belittling their trials… BUT, I did want you to know that my older sister was also born with a congenital heart defect. She was born in 1975, when there was very little they could do to help a newborn with the issues you’ve described. Loooong story short, through a priesthood blessing and a miracle, she was able to thrive until teenage hood, which is when the doctors were finally comfortable performing her first open heart surgery.
    She is doing wonderfully. She has limitations, of course, as you’d expect, but it really hasn’t controlled her life at all. Most people who haven’t known her for a long time have no idea.
    I just wanted to leave you with a success story and let you know that even though it’s totally scary and it may not be exactly like other people’s experiences, there’s lots of hope.
    I’m hoping for lots of peace for your family.

  25. I will pray for you and your family. I know the feeling all too well. In 2010 our son Andrew was born with same defect. He was able to go eleven months before the surgery was necessary. One hole was not closed completely after surgery but he isn’t having complications (praise God!) and goes regularly to his cardiologist for check-ups. Even though both Ruby and Andrew have/had tetralogy of fallot, I know that no two cases are identical. Like Ruby, Andrew looked perfect in evey way. I pray for your strength because just knowing about the condition causes stress and worry. May God bless and keep you.

  26. Hi there! I’m new to your blog but wanted to let you know that my daughter was born with multiple congenital heart defects as well as severe hydrocephalus. She had her first of 4 neurosurgeries at a week old, and heart surgery at UCSF at 2 1/2. We were told she’d need another heart surgery later, but so far, she’s staved it off. Today, she’s a healthy, happy, young lady, married to a USAF pilot. We went through some very scary times as I know you are, but there’s a bright light at the end of your tunnel! I also had the pleasure of having a delightful young student in my third grade class two years ago who was born with tetralogy of fallot. She, too, is healthy, happy, and thriving! Praying your Ruby is blessed with these same outcomes!

  27. Oh my goodness Christie!! Thank you for sharing this here, I will be thinking and praying for you and Ruby as often as I can!! Came over to say congrats, and now I’m really glad I did…it’s not “fun” to read, but good to know what’s going on with you guys. I’m so sorry you have this burden on your heart, but I’m so glad there is hope!!!

  29. Congratulations on a sweet baby! Prayers for you and your family. It is truly amazing what the medical community can do. My friend’s micro-preemie had open heart surgery around a month old and you could barely even see a scar a week later. Prayers for strength for Ruby and you and prayers to guide the doctors and nurses in their care of Ruby.

  30. Ah, my sweet cousin . . . we have been praying for you and loving you from afar. I love you dearly and hope you know how amazing and wonderful you are. I am so grateful to have you for my cousin. I love you!

  31. Asking why only brings more pain. That question really has no answer. But saying that it is just as it’s supposed to be brings comfort, encouragement, and strength.