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.
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.
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.