God and Tomas, part nine

On the way out of OR I got to swing by (in my bed) NICU and really take a look at him for the first time. He was so small. I touched his toes and just looked and looked, as much as I could in a drive by viewing. He had a tube down his throat to drain out what was in his stomach because it had nowhere to go.
Since it was past midnight when I was brought to my room, and my friend was beat, she decided to stay with me and help me out. I am so glad she did, I can't imagine being there by myself that night. The nurses came in and did their thing, and by 8am I was going to get my rear-end to NICU. I got out of bed and tried to dress and clean and all the other things you need to do after a c-section; and let's just say my friend and I are bonded for life and I can never disown her because she knows too much. And thank God for narcotics so I don't have to remember any of it vividly - just a vague recollection.
She wheeled me down and I had my initiation into NICU scrubbing. We went into his room, and after we were settled the nurse put him in my arms. I got to hold him for the first time, and the wires and tubes just disappeared. They melted into nothingness, away from the space that was just him and me. What a glorious moment!
After a bit we went back to my room and my friend got me settled and then headed home. My husband had caught a flight out of CA that morning but still wouldn't be there until well into the afternoon. Around this time the phone calls started rolling in from the NICU nurses and doctors about all the diagnosis they were finding. What we thought was a healthy heart based on pre-natal screening actually had 4 holes in it, but they were small and expected to close on their own. Later that morning, another call came from the surgeon, he had convinced the hospital and some nurses to operate on Sunday. That was the next morning. I had someone wheel me to NICU and asked for a priest. Within an hour Father Scott from a nearby parish was there, and Tomas was baptized. Just him and me and a tiny syringe with a few drops of water. It was an emergency baptism - because he might not make it through the surgery.
A little later two other friends came to visit, we were on our way to NICU to see the baby. The elevator doors opened and who steps out - my husband! My friends graciously bowed out, allowing my husband to go in and meet Tomas in a private moment. We went in and looked him over. Tomas was not a magazine cover newborn, and it had nothing to do with DS. Oh, he was cute all right, but just had a few quirky things going on. For starters, he had no eyebrows - not a hair in sight. Then his cranial plates were overlapping. When I first saw this I thought it was a DS thing, but the nurses assured me it was a baby thing, and that they would move and shift and eventually fall into place. At the time my husband came in they were overlapping right over the center part of his head and he looked like a little Klingon baby, only with no eyebrows! I could tell he was nervous that this was all permanent stuff so I did my best to reassure him. He didn't want to hold him as there were too many wires and he was too afraid. We just sat there for a long time and watched, and eventually headed up to my room.
That evening was spent logistically planning for the surgery, and who would be where. He left me in the morning to go pick up the girls and his mom (who was staying with them at our house). They all met me in the waiting room for post-op, and then he and I walked with Tomas' isolette back to pre-op to say goodbye. That moment is so very, very hard. We've done it five times now, and it is never easy, but that first time was a huge test for us. How much did we mean it when we said we would put our faith in the Lord, and let go?
One huge blessing was that the post-op room was empty except for us. It was Sunday and no other surgeries were scheduled that day. We prayed and waited and entertained the girls. It was so strange, I was still in a wheelchair and on an epidural pump, I was only 32 hours post-op myself. Adrenaline is a gift from God.
The surgeon came out and said everything went very well, and that he had placed the g-tube "just in case" as we had discussed. What a huge Godsend that turned out to be!
A few days later, and I was in NICU alone, and he was not doing well. He was under jaundice lights, and completely swollen from the surgery. Not breathing well, and certainly not eating. In the far back corner of our shared room was an older baby whose mother was there every time I came to see Tomas. The baby was always on his stomach and had tons of toys and blankets under his crib. I didn't ever pay too much attention, and the hospital was pretty strict about its privacy policy. But I had learned about the butterflies.
At each room's entrance were butterfly stickers with the baby's last names that were in the room. One day I was walking towards Tomas' room, which normally housed 4 babies, and noticed there were only 3 butterflies that day. When I got closer the front corner curtain had been drawn, and I knew. The sadness and darkness just emanated from behind that curtain. I still couldn't touch Tomas but I moved my chair as close as I could to his isolette that day, and I hung my head for the family next to me.
A few days later the far back corner baby's father was there when I walked in. I had never seen him before, just his mother, and quite frankly he was scary. He looked like a gang member. His world was as far from mine as you could possibly imagine. Pants around his hips, gold chains, tattoos, funky hair - you name it, and he had it. I just moved to my small corner of the world and sat next to my baby. A little later I heard him talking to his son's nurse, "but can't they just do a lung transplant?" The nurse muttered something back which amounted to there was nothing more to be done. And my heart broke as that wall of fear came crumbling down around it. This man was begging for his son's life. It was the first wall that God used Tomas to tear down for me. About a week later and that baby's butterfly was gone and his curtain was closed, and I hung my head again. this time for the gang member father who was just like me.