Tough

I really thought that I would eventually get used to this. This morning Levins had to go to the OR to check the distance between her stomach and the blind pouch. We got up early and needed to be at the hospital by 7.

As we were driving I kept telling myself to be strong. I thought in my head it was going to be fine. Seeing her in her crib with an IV in her head about torn me out of my frame. I know it is a small procedure but still it's awful. She looked so uncomfortable. For the first time she was hungry. She couldn't eat after 2am. She looked mad. I was somewhat happy to see her mad. I always knew she had that side.

I was excited to see our nurse. Levins had her several times early on and she is one of my favorites. It's crazy seeing nurses work with her. They know more about her sometimes than we do. She answered questions to the OR nurse and it made me smile. I know Levins is taken care of.

She looked so peaceful in her cart on the way to the OR. She was finally free to roll around and throw her head back. Babies with DS tend to throw their head back and that is something we are working on. We are trying to teach her to tuck her head back down. It's going to be a long process but for that moment I was excited to see her relax.

Giving her a kiss before she was wheeled away was tough. I know it's a small procedure but that's my little girl. It is something as a Father I honestly hope I never get used to. It let me know how special she really is to me. I didn't realize how much of a routine I had fallen in. It showed me that this was my normal. I realized again that this is not normal.

I hope that someone reads this someday and realizes that I have been in your shoes. I feel your pain. I know it feels like you can't get over the hump emotionally. I can honestly say it's never going to be easy. I can tell you the moment you get to hold your angel again it will be worth it.

The news after was not bad but wasn't good either. We still have a long way to go. We have closed the gap some, but have around 5 vertebral lengths left. She is making progress. I wish I could change places with her.

I have a small side note. I know there is a new Angel watching over these precious children in the NICU. I never ask questions in the NICU. I do not want to put the medical professionals in a tough position. I do know there was a baby that was not doing well. I could tell by the way everyone was acting. I could see the stress/concern from the nurses. I also knew the nurse practitioner never left that babies side. I know alarms were going off in that child's pod. I know the NICU shut down soon after. A Chaplin was around. I didn't sleep much that night. I was thinking about my girls but also thinking about that baby and its Daddy.  When Cullie got back the next day the baby was gone. The room was cleaned and no sign of the baby. Pray for that family. I do know I pray for their pain. I know he or she is with us watching over all the other babies. I like to think Levins picked up another Angel.