Airport Homecoming

I'm trying my best to keep things updated on here while taking a break from Facebook to focus on our family, and I really am kind of loving the separation. Having the brain power or energy to form an update is no easy feat while living in the hospital though.

So here's some pictures from our homecoming and a Millie update at the end.

Pictures courtesy of A Mother's Art Photography through Red Thread Sessions. We should get the full CD later his week and I cannot wait!!

And an out of place Milena update tagged on to the picture post...

Milena has gained almost two pounds since her gtube was placed on Wednesday.

She has been all over her place with feeds, the goal was to start with bolus feeds because of safety concerns, we made it as high as 130ml/hour but then her labs went crazy and we had to back way off. We then started back at 30, 40, 50, and the. She lost tolerance at 60ml/hour.

We gave up on bolus feeds. We started continuous and had to get creative in how we keep the tubes away from her upper body. We started the continuous feeds on Friday at 40ml/hour over 22 hours, yesterday we upped it to 50ml over 22 hours, this morning we hit the previously intolerable 60ml/hour, and did great with it. So much so that it was decided to start shortening the timespan of the continuous feeds, which requires more ml per hour. We jumped from 60ml/ to 90ml/hour, still the same caloric intake in a day just shaved off a few hours.....she did GREAT!!

Tomorrow mornings labs will tell us a lot, it will tell us if we can start to plan for out patient labs in the near future, instead of being stuck here. It will tell us if we can work on feed advancements at home or if we need to continue doing it here until we are fully transitioned to bolus, which will be many days ahead of us still.

Her goal right now is 1320 calories a day, which is the very low side of acceptable for her height and weight, she needs 1300-1700 calories in a day according to nutrition. We're inching forward and it feels like we have finally broke through the pattern of one step forward and two steps back. Praying we are past all that and she's on an upswing for good!

Please pray that we make it home at some point this week and that her labs are good!

- Elijah continues to be just an amazingly happy, go with the flow, kind of kid.....unless daddy walks out of sight, there there is a whole lot of crying!