Day 133

Today was a very big day for Ryman. For the second time in her life she had straight regular baby formula. Only this time her ammonia didn’t go through the roof! Such a crazy feeling! We did have a small vomit after starting the second feed of formula today but that was actually expected. She hasn’t eaten in days so her tummy was not very happy. Her numbers look great, everything is improving. They are really just trying to get good levels of Prograf (immunosuppressant medication) in her blood. They also want her clotting factor to be in a good place before we get discharged. We started Lovenox injections in hopes of discounting the heparin drip tomorrow. She will need these for a while and we have to give them, not fun! Alternate thighs twice a day, 6am and 6pm. Not going to be the best way to wake your baby up in the morning. Shots are better than clots, we will do what we need to do. Love is sticking a needle into your daughters leg twice a day because that’s what is best for her.
Some of our CNMC nurses came to visit today! We were so excited to get to visit with Rachel and Sarah. They brought some goodies with them and some gifts for Ryman. When your nurses come visit you in a different hospital you know they care. They had a card signed by so many of the nurses who took care of Ry. That is getting framed! So amazing!
Dr. Lanpher came by today to check in and he got to watch Ryman take a bottle of Enfamil. So glad he got to witness her eating some protein. I don’t think we would be in this position without him. When we come get Ryman’s annual check up in DC we will defiantly be stopping to visit her metabolic family. We love those guys.