It's sort of fitting that my 200th post falls on the one year anniversary of Olivia's Norwood. I went back to re-read my entry this time last year and was actually a bit disappointed with myself that I didn't include more details but I remember that day like it was yesterday. The night before Olivia's surgery marked the first time in my whole life that I did not sleep a wink because I was so full of thoughts, emotions and of course worry. I was still a patient at the hospital and I think Mike put in a good word for us with his peeps because I had what I would call a presidential suite of a hospital room. It was meant to hold four patients but only had two beds and enough room for us to seat virtually the entire family if we wanted - which we didn't. (Sorry!) Anyway, that night I laid there and watched endless hours of whatever was on USA while Brian was in the other bed snoring away his exhaustion from repeat trips back and forth to the NICU with family members.
They had told us that they would take her into the OR around 7:30 or 8, so I wanted to get down to the NICU with plenty of time to be with her before she was wheeled off. Around 6 I had enough of waiting around and we went down to see Livvy. The staff was already getting everything ready and the nurses had her belongings packed up and handed them to me to take back to my room until she was settled post-op in the PSHU. It was strange to me then that feeling of holding my baby's belongings without ever actually holding my baby before. Then came the news that rocked me a bit - apparently since she'd already been on the vent for three full days and never really cried more than a few minutes, she had a partial lung collapse. So my first question was - "is the surgery off?" Not that I was looking forward to it, but I was so mentally prepared for it to happen on Tuesday March 30th, that if it didn't, I was going to be crushed. Not the case they assured me, respiratory was on their way down and the Cardiac Fellow assigned to her was barking orders at everyone to make sure that they knew Olivia was about to head down to the OR with Dr. Ilbawi and getting the lung re-inflated was going to be everyone's priority until it was resolved. I felt sort of bad for the nurses and others as they were getting chewed out, but ultimately they did get the lung going again and the next x-ray pre-surgery looked great.
Finally after all the thumping on her chest by the respiratory therapist, x-rays, blood gasses, etc; I was able to hold her. By hold her I mean have her placed on my lap while I tried to take in the most shallow breaths so as not to disturb any of the tubes and wires and Brian just sort of hovered over both of us. As I did, I had the image from the movie Dumbo where his mom is locked up in the cage and he's outside it with his little trunk just reaching for her and "Baby Mine" is playing in the background. I just felt like I was chained there and she was going to go off and there wasn't anything I could do about it. Which in reality was all true, I knew the moment was going to come where I was going to have to give her back to the staff and she was going to go into the OR for an undetermined fate. We had done our part by researching doctors, hospitals the diagnosis itself and I had rested (slight fib) and relaxed as much as I could for the duration of my pregnancy in hopes of getting her to a good size and the rest was out of our hands. I knew and still know to this day that whenever we kiss her goodbye for a surgery, cath, any cardiac procedure; there's no telling of the outcome.
I actually made the decision that I would leave the NICU just before they wheeled her out to head back to my room. There's a lot of things that I can handle, but kissing your baby right outside the doors to the OR is about one of the worst things I've had to do. I did it with the pre-Glenn cath and then the Glenn and of course I'll do it as needed going up to the Fontan; but I gave myself a pass heading into the Norwood. They gave us three updates via phone directly into my room throughout the surgery and the last one was just to let us know that they were taking her off bypass and we could meet her in the PSHU within the hour. To this day I remember the sigh of relief that we had at least started down the journey and gotten one surgery behind us makes me feel a little more relaxed even today as I type this. I called the grandparents and gave them the medical scoop and then I made a phone call to my cousin Mari to give her a verbal recap of the day's events. She had a little extra vested interest since her birthday coincides with what is now Olivia's Norwoodiversary. I thought it was more than fitting seeing as how Mari and I have always been there for each other and I took it as an extra good omen for things to come and thank goodness it's been all that and more.