Sunday, December 21, 2014

One Year Ago Today...

One year ago today, we got the best Christmas present ever, our sweet little Rubes got to come home after spending 8 weeks in the hospital. One open-heart surgery, four subsequent surgeries, countless medications and blood transfusions later, they told us she was healthy enough to leave. I can't believe it has already been a year. At times it feels like it was so long ago, and then at other times feels like it was just yesterday that we were there.

Those eight weeks were the hardest I have ever been through, and have had a lasting impact on every facet of my life. I am not the same person I was when I entered the hospital, I left a very different version of myself. I left as someone that expresses gratitude more, shows love more, cares for others more, and has really learned that a life lived for joy, kindness and love is the one that is worth living. I think I knew all of these things before, and tried to live my life that way, but our time with Rubes in the hospital just made those things so much more important and so much more of a focus.

Rubes about 3 weeks in to her hospital stay, still on the ventilator and still on dialysis 

During our time there we only took a few pictures of Rubes, because truthfully it scared me to have a lasting image of how sick she was, because at times we didn't think she was going to make it out of there and I didn't want that to be what I had to remember her by. I hate how that last sentence sounds, so morbid, but I just couldn't bring myself to capture and forever have proof of how scary stuff was. We did take a few though, we wanted to show her when she got older how brave she was, how hard she fought, and how much the staff at the hospital cared and loved for her.

This was the first time Mommy and Daddy got to hold her after she was admitted. 16 days is a long time to wait to snuggle your sick baby, but it was the greatest feeling ever! 

The doctors and nurses that took care of us there are the most amazing people, and words or actions will never be able to express how appreciative I am for all of them. For the ones that literally brought her back to life, to those that just held my hand and gave me a hug when I needed it, to those that told me crazy stories to make me laugh, and to those that wouldn't let me back in the room until I went outside and got some fresh air, I will be indebted to all of them for the rest of my life. I don't think they can understand the impact they have, to think that they helped me in the ways that they did, which is something they have done for countless other families as well. These are truly remarkable humans.

One of Rubes' biggest set backs after we had been there for a month, was that her liver and gallbladder began to stop working properly, making her turn really yellow. We think she just wanted to match her giraffe! 

On the day that we were sent home, I was absolutely terrified, she was still so fragile and needed so much help. I just wanted to borrow all of the hospital's machines and equipment, so that I could know everything was alright, but they said it would be too hard to transport....hahahaha... We were also set home with 13 different medications and a very strict medicine and feeding schedule. There were literally two hours of the day where she didn't have to eat or get some medication. I had to be up around the clock to make sure things were being given at the appropriate time. She still had an NG tube in her nose that she was getting meds and some of her feeds through, so we were also trained on how to replace that if she accidentally pulled it out. It was all so overwhelming and terrifying, yet so amazing and wonderful to have her home. Words can't express what it felt like to lay in my bed that night with Ace, Rubes and Scar all under one roof, something that hadn't happened in months.


The 2nd night we were home! She wanted to show off all of her battle scars. What an amazing little girl. 
On this one year anniversary of our coming home, I'm just so grateful to every moment that I get with her and Scar, and for every moment that I get to see them grow together. This year has tested Ace and I as a couple, as parents, and as people, but we kept on fighting, just like Rubes did and we made it through, just like her. I couldn't be more proud to be her mom or more blessed that she was able to overcome all of the challenges that she did. The last year has been a blessing for us, and I hope for a million more healthy years with my girl.

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