Ruby's OHS Annivsary

Last year around this time we were finally reunited with Ruby after our longest parting. The actual surgery latest for 11 hours but we were separated from 8am until around 10pm. When I think back to that morning I remember feeling the same way that a person does when waking up early to take a long trip...with all of the happy anticipation replaced with terror. We woke up very early in order to get to the hospital and spend time alone with our daughter. When we arrived I remember thinking, "Should I wake her up?" We did. We knew that we both needed to hold her for what could be the last time. We both needed to imprint that memory so that it would be something we could always look back on with peace and fulfillment. Ruby was calm and affectionate. She snuggled deeply in our arms as she done many times before and rested. My parents came and even the cleaning lady I mentioned in yesterday's post came in early to visit with her. We all tried to remain calm in order to prevent Ruby from becoming nervous. And as the morning wore on more and more medical personal started sifting in.

We signed consent forms and were presented with the same information and disclaimers we had been told many times before. And suddenly it was time to say goodbye. I had to take the hardest walk I've ever taken. Sadly it's a walk I will have to take again and again as Ruby grows. I carried my child, with Dan by our side, to those double doors that parents can't cross. Even now, recalling that walk and that separation causes my heart to catch in my throat. It was terrifying. It felt like a death march, like I was willingly handing my child over to an executioner. I wanted to soak up every moment with her and I was so scared my last memory would be of her crying. She did not. I hugged her and tried so hard not to cry. I didn't want her to see fear or sadness in my eyes. She went off with the nurse, thankfully without a struggle but as soon as those doors closed I erupted. My heart broke with the loss of control and the potential loss of my daughter. I kept thinking about the fact that in moments she was going to be restrained. And in that instant she would be afraid. I hated that her last thoughts would contain fear. I hated that I couldn't be there to hold her. I still hate it. I hope she wasn't too frightened...but I'm sure she was. Just as she now is during every doctor visit and every hospitalization. It was horrible and it still is.

The walk back to her room to meet my parents and collect the last of her belongings seemed incredibly long. I didn't want to look at my mother. I knew she would be crying and that my tears would cause her to cry harder. I made myself stop. I regained composure and knew that was the only slip I would allow myself. The rest of the day I would remain clinical and distanced from what was really happening in order to survive. Thankfully I was able to do just that.

We made our way to the waiting room and in there well...we did just that. That place was not so much fun after 11 hrs or so. First of all it was quite uncomfortable. They were doing construction next door so it was loud. The chairs were stiff. There were no couches. It smelled like urine. (The new waiting room is WAY better) We're also stuck in this room with families whose kids are in surgery for really minor things. And it's kind of hard to hear all of these parents talk about ridiculous fluff while your kid is on the table for something that has just as good a chance at killing her as it does saving her. Anyway, the rest of the day went by in that smelly little room. We got updates every hour or so. I would go and pump. We would eat a little something. It took forever.

Ruby Post-Op

One of the best updates we received was that the surgeon had attempted a complete repair. Up until that point we were unsure if only a partial repair could be completed. That would mean another surgery in a few months and possibly not going home until after that second operation. So we were overjoyed to hear that was not the case. But, if you know Dan and I, we don't like to get too happy about things until all is said and done, and so we remained skeptical of the outcome. Around 11 hrs after we had said goodbye to Ruby, we got the update that the surgery was done! We were now shuffled to another waiting room outside the CICU and waiting for what seemed like an eternity (around 2 hrs). We got the word that they were going to be wheeling Ruby to the CICU and that we would be able to see her briefly in passing. When we saw her bed coming we were not surprised or scared. All of our preparation had proven very helpful. I was just relieved to see her face after thinking that I never would again. What I do remember was that I told Dan, "She looks so pale." He said, "Kerry, that's what pink looks like" as he pointed to her monitor. Her O2 saturation level was 100%. Even in those early days she'd never hit 100. Never.

We had to wait some more and we were eventually admitted into her room. It was bright. It was crowded with pumps. We had 2 nurses devoted just to little Ruby. The monitors beeped constantly. But I remember sleeping better that night than I had since the day she had been readmitted to the hospital after our short stint home. In the CICU you are allowed to sleep in the room with your child. I was there to guard over her and protect her as I should have been since the beginning. I knew enough from our research that she was no where near safe. That the next few days and weeks would be the most trying for her, but I felt such immense relief because I was so close to her. I was able to sleep by her side and have never spent a night away from her since.

Still so beautiful. Nothing quite like seeing your child's heart beat from the outside though. :/