So, sometimes life throws you curve balls.... and I am not really that great of an athlete. But I do believe God is on my team. He might even be the coach, when I let Him. Those tend to be the games I win.... err, there is no "I" in "TEAM", right?!
NOLA or Bust
After three days at home with my Bug, she went into Congestive Heart Failure. I was thankful we never had to use the CPR we practiced in the NICU. We took her to the Emergency Room on a Tuesday night ... and after two weeks of the Dr's trying everything medicinally they could to heal her heart, help her to gain weight and get her off oxygen, it was no use. Surgery was the only option if we wanted to keep her. The ambulance showed up with two EMT's strapping my 5 week old little girl on a stretcher, loading her up and driving her to New Orleans,LA to allow the cardiologist team and surgeons evaluate her and decide whether she was a "candidate" for surgery. I followed in my ride, believing with all the faith I could that this was the answer I had prayed for. My girl would be ok. When we arrived to the Ochsner's PICU, they took her oxygen off to see how she did on room air... and for some "random" reason, she didn't need it anymore (Random, because He is just like that sometimes). She lay in the bed for 3 days breathing on her own! It was the one thing the Dr's really wanted before they did surgery.
Dr Mello, the pediatric cardiac surgeon, explained to us this was a simple VSD repair surgery. They see a lot of these and it is pretty basic from what we understood. No fear - right?!
We again, rose with the chickens and arrived at the hospital to spend some time with Lady Lennon. I wanted to rub her chest and feel the soft skin one last time before a big scar down the center imperfects my Bug's perfect skin. As I rocked her, I sang "Healing is in Your Hands" and "Came to My Rescue" over and over. I prayed ... more like begged... for God's control and guidance over those Dr's. I had peace like a river... so much that I sat in tears in awe of my God. Tears of joy because I knew this was the answer. She was going to be just fine. They came and rolled her away ... tiny little one in a big bed. She looked happy and alert and clueless as to what she was about to face. I mean, how much can a 5 week old really understand anyway? We waited in the waiting room for a short time and decided this is going to be a few hours we might as well get breakfast. Walking to the cafeteria, we passed the surgeon, "I was looking for you all... I just reviewed the echo and I was told this was a VSD surgery... that is not what this is. What I saw is an AV Canal. It's an all together different surgery. Shouldn't be any problems, but it's just not the same. I will talk and explain more to you after the surgery." And he walked in to cut my daughter open. I grabbed my trusty iPhone and got busy researching AV Canal. What I read was much more scary but explained her symptoms exactly. "God, what is going on?! Please reassure me You are in control!" I almost freaked out but again, my God spoke to me "Remember Job, he worshipped me no matter what trials he faced." So, again, I started my worship music and got to it. Surgery started at 7am and at 2:45pm he was finished.
Dr Mello came in and grabbed a magnadoodle (it was the only thing near by) and sat at the children's miniature play table and chair and drew exactly what he performed on my daughter. And thanks to my husband we will forever have a picture of this renown Pediatric Cardiac Surgeon at a mini table with a magnadoodle explaining the procedure that saved her life.
We were explained all the wires she would have, all the iv's, all the tubes for drainage, pace maker wires, breathing apparatus, feeding tube, catheter, heart monitors, arterial line, breathing monitors ... you name it she had it. The vision of my tiny blessing covered in these things was nothing in comparison to the actual sight of it. No parent ever wants to see this or imagine this. She looked lifeless and helpless. She looked unreal. The nurse folded back her blanket and there it was - the giant bandage that covered the wound that saved her life.
I sit here now, typing as she sleeps... sedated and medicated. Every now and then I see an arm or leg move as she begins to come off the anesthesia. And still I am in awe of my God. The strength He has given me is beyond my understanding, beyond anything I have ever had to do. We have a long road of recovery ahead .... and today the one thing I hear my God saying to me is this: "So, does the Down Syndrome seem like a such a big deal now? You had so many fears about a simple syndrome. Put it on a scale and weigh it in comparison to your daughter's life. Not such a big deal anymore is it?" And He is right... once again. The Downs seems like such a tiny issue compared to the life of my child. Bring on the Downs and all the therapy and good times ahead because I know it will be a bucket of ice cream compared to this! I have no fear.
So... I know Open Heart Surgery seems like quite the beginning to a bucket list for a 5 week old, but did you expect anything else?! I mean, you are talking about "my" offspring... Random is our thing.