The Eve of Ruby's OHS

Well, here we go again... One year ago today Dan and I were preparing for Ruby's open heart surgery (OHS). I don't really know what to say on the subject. I'm sure I'll figure something out as I ramble along. Some families celebrate the anniversaries of their child's lifesaving surgery. Honestly I don't think we'll ever be one of those families. When I look back on that day and the days and nights surrounding it I mostly feel sick to my stomach. But I think I can suppress that feeling long enough to write down what we were doing one year ago to prepare for what was to come.

As I've alluded to before, I believed that Ruby would die during or after her surgery. Dan and I were obsessed with statistics before her OHS, even though we knew that they can not paint a fully accurate picture of what is to come. We looked up the stats for successful unifocalizations and ToF repairs from different hospitals and harassed the cardiology staff at CHOW enough to get some, albeit incorrect, stats for surgeries like Ruby's at our hospital. I knew that the success rate was so-so. I knew there was a very real chance she would die and I'm not a very optimistic person so...I chose to believe that she would. I think I wanted to be as prepared as possible for the worst, even though there really is no way to prepare for the death of your child.

In the days before her OHS Dan and I talked about what we should do with her things; all of the things in her room in the NICU I mean. We knew we would be "homeless" during her actual surgery and that if it was successful she would be moved to the CICU. But in the interum...what on Earth were we supposed to do with all of her stuff!? And have you seen the pics? She had a TON of stuff! We came to the conclusion we needed to unload it the day before her surgery and leave it in the car. That way if she died, we wouldn't have to go through the additionally painful process of removing it. Dan and I talked about this several times, once in front of a nurse who scolded us, saying, "Don't think about such things!" I told her, "We have to think about these things because she might die. How can we not?" This is our life, this is our reality. I have to think about it because I don't want to be going through my little girls books, toys, and clothing smelling her sweet smell and flashing back on all of our memories knowing that I would never get a chance to make any more with her.

So we did empty her room. We cleaned out my milk in the freezer. We erased as much of ourselves from that awful place as we could. And then we waited. I tried to numb myself like I did in those early days. I tried to remind myself that it was the right decision and that it was all worth it...that the pain she was about to endure was worth it. I didn't cry at all in those days. But I did try to think about the things I needed to do in case she died. I remember bringing in my camera from home to get better pictures of Ruby. I knew I would want at least one nice print that I could have for home. I also made my dad take a picture of Dan, Ruby, and me as a family. We didn't have any pictures of the three of us since her first days. Dan and I also tried to familiarize ourselves with what we would see after her operation. We looked at pictures of infants with their chests still open after surgery. During her pre-op we took a tour of the CICU with that sickeningly upbeat PA, who actually said things like "saw open her chest" with a twinkle in her eye and smile on her lips. We saw the tree of pumps, the lifeless bodies, the nervous parents, and simultaneously hoped and feared that we would get to that point.

Family Portrait

She had a cath a few weeks before the OHS. Not much had changed but Dan and I finally understood exactly what her heart looked like. She also had lots of blood work. Some of which couldn't be done because the staff at CHOW rarely have success in that department with our little girl. And can I say here that I HATE blood draws. I know we all do but watching your child go through that again and again and again and again...well you get the idea :( You know, one of the kindest souls we met in the NICU was the cleaning lady, whose name I probably shouldn't post here. She LOVED Ruby and if I could bring myself to take her back to that Hell she would be the only person I'd want to see. She used to sing to Ruby in her own language and Ruby would smile and talk back. It was wonderful to see. And when poor little Rubes was screaming in terror from all that blood work that sweet lady cried along with me outside her room. I'm so glad she was there to watch over Ruby when I wasn't.

I'd also like to paint a picture of Ruby's condition before her OHS. She required more and more O2 to maintain her sats. She was on 5 L of high flow O2 sating in the 60s and sometimes low 70s. She had rashes all over her body and face from her monitoring leads and the tape required to keep her cannula in place (she was an expert on removing it). She needed blood transfusions as well as the increase in O2 to keep her sats up. She was vented continuously and fed into her intestine 24 hours a day. She was tired all of the time. She was sweating profusely from her heart working so hard. She could barely hold her head up and was very weak. She was in heart failure. She needed the surgery soon or she would most certainly die. She was 3 1/2 months old. Dismal, huh?

Anyways, those were our days before her surgery. As for the actual eve we simply held Ruby, sang her to sleep, and left just a little later than usual.

Despite all that she's such a beauty!