Sadie's Initial Diagnosis - Tuesday

After a couple of hours of Sadie’s arrival, the nursery dr came in and told us there was a problem, that it appeared to be her lungs, and hopefully with a little intervention and medication she could be better stabilized. Two more hours passed, and he came and told us that she would have to be transferred to St Mary's NICU, which had more advanced equipment and medication. My now favorite nurse in the world Cheryl-Ann got me ready to be able to be transferred with Sadie. I got in the wheelchair to go. We were given a birth certificate that we had to use, and we settled on Madeline Sadie as her name and decided to call her Sadie, after her great-grandmother who was a very strong and long-lived person (another story for another blog). Mom and Dad left to put Katie back to bed, since it was clear she wouldn't get to meet her sister that night.

Another hour or two later the doctor came back in and told us that things had changed. A cardiologist had arrived and found a heart defect called Transposition of the Greater Arteries (TGA). He left us with a drawing on a napkin and my world began to spin in a different direction. However, I still thought she'd be ok - he said 98% of the kids who had it were fine after surgery. He told us that Jason could go back to see her briefly. I was crushed that I wouldn’t see her, but kept my mouth shut (must have been the shock – you know me. I never keep my mouth shut.) But, Cheryl-Ann Worlds-Greatest-Nurse brought in a wheelchair and got me set to go in right behind Jason. She didn’t ask the dr, she just did it. I love that woman.

Seeing her in NICU started to bring me around towards our new reality. This post has her picture of the first time I REALLY saw her. I don’t have a picture of her when she came out, or for the brief second I held her, so I have nothing but a flash of a memory to remember what her face looked like without a ventilation tube and swelling. Despite the tubes, she was pretty pink and looked ok. She was a fat little thing – I couldn’t get over the fat legs and all her beautiful, dark hair. It was in there that I learned her vitals - 7 lbs, 10 ozs, 19.75 inches long. I think they said she was born at 10:35, but we have differing times written in different places, so I’m not completely sure. She had tons and tons of dark hair. Her face was very squished looking, which I learned later was due to edema (swelling because of the toxins and fluids that weren't being evacuated properly). But she was awake, and she grabbed my finger and held tight. I was barely able to breathe while she held it the entire time I was there. She has the longest, most beautiful fingers I've ever seen, with gorgeous nails. Within a few minutes we were asked to leave, and had to go back to waiting in our room. We had been told she’d have to go to St Mary’s, and Cheryl-Ann Super-Nurse pulled strings so that I could go at the same time she did. I got into the wheelchair again and was all packed and ready to go

Another hour or two later I was packed and ready to go, sitting in the wheelchair, when the doctor came back in, accompanied with two cardiologists from the transport team. More bad news. Dr. Albrecht (one of the transport cardiologists) explained in more detail what TGA was (see link on right-hand side for a brief overview if you want it), and that we would need to transport Sadie to Charlottesville (UVA medical) for immediate assistance. Being a Hokie, I naturally questioned whether or not this was the right place for Sadie, but they assured me that it was the best place in our area for the type of assistance she needed.

On the way out, the transport team brought in the travel incubator for one last goodbye before Sadie got on the road. That’s when reality hit me. She was so tiny in there, covered in tubes, machines whirring, and they were on the run out the door with her. I was stuck in the hospital until I could be discharged, feeling totally fine (physically) and watched them take my baby far away. No mom should ever have to go through it – it sucks.

I didn’t get a call for many hours that she had arrived at last. On the way, her vitals had all dropped, and by the time she arrived she was in really bad shape. Her 02 levels were down to the 30s (should be 90-100) and her blood pressure had almost bottomed out. I found out later that they immediately worked on stabilization techniques, which including an emergency atrial septostomy. Basically, they went through the artery in her groin up to her heart, inserting a balloon to open up the hole between her left and right ventricals, hoping to encourage the mixing of blood, thus increasing her O2 levels. We had no idea how close we were to losing her right then and there. Thankfully she is still with us!! She's a fighter. All the nurses and docs can't believe how fiesty she is - "fiesty" is the description we get over and over, even from new rns/drs as they work with her the first time. Thatta girl!