I can't believe it has already been one week since Hayden was born. He is doing very well and expect to go home soon. The only thing that is keeping Hayden in the NICU right now is our parent training on cathing him. Today we had the Spina Bifida Clinic Coordinator come to help us cath him and teach us how to do it at home. Tomorrow both of us have to be proficient at it. This isn't that easy as every NICU nurse has had trouble with it as he has a small opening at the valve to his bladder. He hasn't lost much weight with his surgeries and has been a great strong eater, great sleeper and rarely cries. What a blessed time it has been to spend all of this one on one time holding him without distractions thanks to Grandma Mary taking care of Hanna.
So far our days go something like this. Wake up at 3 & 6. Go to hospital after getting ready, cleaning room and breakfast. Feed Hayden at 7:30, stay there all day meeting with doctors, nurses and many specialist as they make rounds, eat lunch, back to the room to cath and feed Hayden, more meetings with specialist and training, eat dinner and return to the Ronald McD House around 9 or 10 and try and sleep by 11 or 12. The NICU seems like a time warp.
While at the RMH we met another LDS family by chance while we sat next to them over dinner. They have been here for 6 months of their son's 1 year old life. Today was his 1st birthday and they learned that he will need another serious surgery tomorrow. My heart goes out to them. It is hard being here seeing so many kids that are suffering. God bless all of the people that work on these special little children. My heart couldn't take it.