Lemon Squeezy Home

Ruby Update {best Christmas present ever!}

By

DSC_0220Hello everyone!  For those of you not on instagram or facebook, I wanted to give you an update on Ruby’s Tetralogy of Fallot open heart surgery.  It went very well.  There were a couple bumps in the road—one of which was a big scare for us and they almost had to reopen her to fix what went wrong.  Thankfully they didn’t have to and she made it through!!  And we got home on Saturday—just 5 days post surgery.  Amazing.

Ruby Update

I’m also amazed at how good her incision looks already.  That part at the bottom beneath the main incision is where her chest tube came out.  Oh my goodness—no amount of pictures can prepare you seeing your own child hooked up to so many machines and so many many wires coming from or into them.  There were at least 12 things coming in or out.  Blood transfusion line, chest tube for draining, IV to the heart, etc etc.  It is heart-breaking.  Those pictures make me cry, but these ones don’t :).  So I won’t be posting the immediate-pictures-after-surgery where you can see everything here, nor on facebook or instagram.  Maybe someday I will have a blog separate from this one like I do for Bailey’s craniosynostosis.

Here are the progression of pictures/captions I posted on instagram.  This is the easiest way to see how the surgery went.

   “Oh my word. Loves, hugs, blessings to everyone. Your hearts are touching our lives. Thank you for the love. They called with an update about fifteen min ago saying they just made the incision and will call us again when she’s on bypass.”Fullscreen capture 12272013 43730 PM.bmp
“Been on bypass for about an hour. Feeling so loved and lots of peace. Thank you so much everyone, and especially to those who are posting and helping us smile this morning. Xoxoxo. We’ll have another update in half an hour.”Fullscreen capture 12272013 43727 PM.bmp
“We finally were called back!! Long update for you:  She is still intubated and doing well, starting to wake up a bit which is sad. She was on bypass for two hours. The doc started fixing the hole and had to take the patch out and start over as he realized there was a hole behind the hole that was much larger than they thought they were dealing with. Also tied off the PDA and partially patched an ASD. They had to shave off quite a bit of her heart as it was so thick on the right side, and that was also done from the inside of her heart so they took a portion of her heart to patch that hole he had to make to remove that part of her heart. He did have to sew into the tricuspid valve but is hoping that portion fixes itself. The pulmonary valve was left alone!!! We won’t know for sure for a couple months, but he is hopeful this is her only repair. Yayyyyyy!!! Thank you for your prayers!! She’s doing well and should be extubated soon.”
Fullscreen capture 12272013 43721 PM.bmp
“Extubated and finally comfortable. Took some time to get on top of her pain. The nurse was frustrated but they gave her more morphine and medicine for anxiety. Blood pressure is high so they are watching that plus she keeps holding her breath. But doing better than before. Again, thanks so much for the love and support everyone. We are feeling it! And so is Ruby Jane!”Fullscreen capture 12272013 43718 PM.bmp
“Thank heavens for morphine. Sleep, precious Ruby. I hope tomorrow is less painful.”Fullscreen capture 12272013 43713 PM.bmp
“She’s eating well, which is great. Last night was pretty awful. In some pain and soooooooo so itchy, poor sweetie. No more catheter and she should be getting the IV that’s in her heart out soon.”Fullscreen capture 12272013 43710 PM.bmp
“Feeling so thankful! They pulled out the right atrium line (going to her heart) and her heart bled and bled. Surgeon came in saying they’d probably have to take her back and open her again to close the tear the RA line made. Dillon and my brother in law gave her a blessing and the bleeding has slowed down enough that they are thinking she’s in the clear. She is getting platelets and some more blood right now. We are in good Hands. Thank you for your prayers!”Fullscreen capture 12272013 43706 PM.bmp
“I am holding my baby!” (this was the end of the second day)Fullscreen capture 12272013 43700 PM.bmp
“Had a bit of a hard start of the day with throwing up this morning and major tiredness. Had a bout of energy though for about ten minutes this afternoon and now drifting off to a hopefully peaceful sleep. Should be moving to the recovery floor and out of the cicu soon!”Fullscreen capture 12272013 43656 PM.bmp
“Out of cardiac ICU at 7:30 tonight!! And she was kicking and smiling! Threw up tonight again but she’s so much happier! And everyone, wow—just so thankful for all your words of support and love . I’m so overwhelmed with gratitude for you all, for Ruby doing so well now, and for amazing medical care. Hugs to all!!”Fullscreen capture 12272013 43651 PM.bmp
“She’s doing so good. She had a sedated echo and everything is looking awesome–the only thing was higher pressure in her left ventricle. So they are giving medicine for that. Little sad today but once she saw those kids, she was all smiles. Had her chest tube removed as well…every day less and less things to be hooked up to. The doctor said we will probably go home tomorrow! So so happy.”Fullscreen capture 12272013 43643 PM.bmp
“We’ve been home for 4 hours! So so happy. Ruby giggled when we put her in her car seat and even more when we got home. Came home on lasix (to make sure fluid doesn’t build around her heart) and enalapril (for blood pressure). She is doing so well. Still gags on her pain med and nearly throws up each time, but she is happy. And we are home. And I am just overjoyed. My baby made it through!!! Will have another echo done in a couple weeks to check the pressures in her heart.”Fullscreen capture 12272013 43639 PM.bmp
“Best Christmas present ever, having her home. Missing my other kids while they stay with grandma, but we’ll all be together soon. “Fullscreen capture 12272013 43633 PM.bmp
“Daddy serenading her on his guitar. She’s having a sad day after a sad night…after a sad week, to her. Poor little baby. So glad she is home. Looking forward to her being herself again soon. :)”Fullscreen capture 12272013 43628 PM.bmp
“She won’t stop giggling at her siblings. :) They’ve been gone since we’ve been home with grandparents and she was SO happy to see them last night. Me, too.”Fullscreen capture 12272013 43621 PM.bmp
“Last week I had peace, but also a fear that we wouldn’t be taking her home. So many people reached out with love, prayers, service, and donations of money–many who had never met us. This Christmas has been harder than normal, but with those trials we have seen such amazing blessings. Our hearts are full. Thank you!!! I wish I could give everyone a big hug. Thank you so very much. Merry Christmas!!”Fullscreen capture 12272013 43614 PM.bmp
(end of instagram pics/updates)

I’d say the first three days in the hospital (surgery day and the two after) are just awful.  It is so hard to see your child in so much pain.  So.  Hard.  But on day 4 we actually got some smiles from her and the nurses/doctors kept commenting on what a happy baby she was.  She even giggled at them.
DSC_0030-001

What a blessing to have her home and well.  We will not know for a couple months if any more surgeries are needed, but they were able to save her pulmonary valve, meaning the need for valve replacements in the future will not be needed!

Being home has been difficult, but she is getting happier by the day. She scared us after the first couple days home and was sweating a lot so we had to take her back in to make sure she was ok. She has left ventricular dysfunction right now and is taking blood pressure medicine for that as well as medicine to draw the fluid out of her body so it doesn’t build up around her heart.  She is very wary of any adults now. Which is ok with me because it means she snuggles her head into my chest and watches them out of the corner of her eye. So I’m enjoying all these snuggles immensely.

I am so so happy.  She’s home.  She’s recovering well.  We hope it’s her only surgery.  We got to spend Christmas as a family.  Such huge blessings.

I have to give a huge shout-out to my friends and family, and to all of you (whom I consider friends!).  The prayers were immensely appreciated and needed!  But while we were waiting in the operating room, I had a wonderful surprise.  I first noticed money being sent to me through paypal when I went to email someone an update.  Then I saw a hashtag #loveforruby and from there was just amazed at the outpouring of love.  There were posts dedicated just to Ruby and our family—amazed you guys!  It was so very touching and really, really helped the hours of waiting to go quickly.  She was in the operating room for 5 hours.  The hearts that were posted, the money sent, the gifts sent…like I said—truly touched.  To see so many thoughtful people post things on our behalf was just incredible!  Special thank you to Sabra and Susan for starting the #loveforruby hashtag on instgram and the facebook group—that was such a wonderful idea ! And Cheri for the printable that helped us out with money–and THE sweetest post I’ve ever read.  Also thank you to Heidi, Lindsay, Katie, Abby, Shannon, Andrea, Anne and Delia for posting about it on their blogs and directing many people with heartfelt words our way.
I hope you all had a wonderful Christmas!  Thank you for your love and support of Ruby Jane and my family.  People are good.

Reader Interactions

Comments

  1. Oh what a relief!! I know we have never met, but my heart was with you all. I can imagine how difficult this was for you.
    Thanks so much for updating us. I hope you and your family have the happiest New Year and that baby of yours keeps on smiling!
    ~Michelle

  2. Oh I’m so happy everything turned out so well! Ruby looks happy and vibrant, well on her way to recovery. Give her lots of kisses and hugs for us all, and have a very Happy New Year!

  3. Whew! BIG SIGH OF RELIEF!!! I was hoping and praying for your family. So very glad to hear she made it ok. Thanks for the update!

  7. May you continue to be blessed!
    Thanks for sharing your beautiful child on your blog…Prayers for you and your beautiful family : )

  8. This is the best update ever! What joy it brought to me to see Ruby’s smiling face. How precious she is. Praying for her complete recovery and no mire surgeries. Blessings!

  10. Thank you very much for your update, I couldn’t wait for it and thought of you every single day.
    I wish you and your family the very best.
    Children with problems like your girls are always searching for a family who is as strong as yours to keep and love and guide them.
    You are great.
    Kathrin from Germany

  11. Look at her skin color! She looks amazing!! I was praying for her and your whole family; this post shows my prayers have been answered!

  15. So very happy for you and your family for the successful surgery. I had two grand daughters go thru this same type of surgery. The photos brought back so many memories. I will keep your family and Ruby in my daily thoughts.

    Sandi

  18. Wow, how very brave you all are and what a beautiful baby girl you have. I am glad that she is recovering now and that you got to spend Christmas together. I hope that she heals well. Best wishes, Kate

  19. What a sweet brave girl with sweet brave parents! :) I hope things keep getting better from here, and I’m so glad that recovery has been going well enough that she gets to be at home! Much love!!!

  20. I have been thinking about and praying for Ruby and her family these last few weeks, and I am so happy and grateful that the operation was a success!
    Wish you all a wonderful new and healthy new year!

  22. Hiya. Happy New Year to you and yours. Just wanted to say am so happy that Ruby pulled through and have my fingers crossed for her that she’ll not need anything else done. Such a trying time for you all. She’s your own little Christmas miracle! Best wishes. Dawn xx

  23. So wonderful that she is doing so well. Amazing what they can get through almost seeming like it never happened. Children are sooo tough. I look so forward to seeing pictures of Ruby all the time, she is such a cutie. Can’t wait to see many, many more.

  24. Yay! Our niece had open heart surgery, which was very scarey. The doctors never promise everything, yet who knew right? Well, our little one is now on the west coast and we are all on the east…she is thriving at age twenty-five! Oh and by the way, besides being very cute indeed, your baby has gorgeous eyes!