Days fly by here. I say it all the time but it’s true! Even visitors say it when they are here. The only way we know what time it is is when the nurses switch shifts. Chris is Maxley’s primary day nurse and when she comes in to tell us she is leaving we know it’s 7:00pm. Then we say, “jeez, is it 7 already?” This happens everyday. People ask me if we are bored here or what we do all day and I have NO idea! We are never bored and we don’t know where our days go.

We have a little routine everyday. Depending on where we sleep we get up and go to Ronald McDonald to make breakfast. Mom makes eggs (sometimes I have cereal) and we sit next to the window and eat and chat. After breakfast we clean our dishes and go back to Maxley’s room. I wash my hands for the thousandth time that week and get Maxley out of his crib and rock/ cuddle him. Mom goes to the break room in the ICC and makes us coffee in the Keurig. We can bring our own pods in and use the machine! She comes back in and hands me my coffee and she starts working. Sometimes we put on Netflix on the laptop (no tv in our room) in the background. I hold M most the day while mom works and sorts out my life in shambles. Sometimes we get the salad bar down in the hospital cafeteria for lunch and sit out on picnic tables to get outside. Dinner always varies and depends on visitors but we eat at Ronald McDonald House quite a bit.

Maxley LOVES being held. He really only likes to be held and doesn’t like spending time in his crib as much. He is very easy going and seems to be content 95% of the day. He still only cries with a dirty diaper and now if he is hungry. Since they are spacing his feedings out more and more he is getting hungry before it’s “time” to eat. He can eat early if he is fussy but can’t get him too far off his feeding schedules. He is on an 8-11-2-5 schedule. That means he gets fed at 8, 11,2 and 5 both AM and PM. At those times they do his “cares” which is blood pressure, diaper change, listen to heart and lungs, take temperature and then start his feedings or get the bottle ready.

He is loving eating and does really well with it. He is eating about 3-4 times a day and we try not to do back to back bottles. We try to do the 8 and 2 and 8.

We fasted him today to try to get his glucose down but it was 82. They wanted it below 40 to run the test. 82 is actually really good but in order to find out why his glucose usually drops we need it to be too low. We will try again tomorrow. There is a chance that it is better since he is growing and gaining everyday. A good glucose for him is between about 50 and 130.

Off to bed at RMH. We are sharing a queen bed and there is a pillow jammed between us since someone is a bed hog ((me)).